Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,808,0.htm Sun, 22 Nov 2009 00:00:00 GMT Sun, 22 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/  On 11/9/2007 Crazzmom wrote:Hello.My mother was diagnosed with pancreatic cancer about 6 months ago and it was inoperable.The oncologist gave her 6 months without chemo and maybe 12 to 14 with chemo.It has been 6 months now and she is doing great.In fact, her CA-19-9 this week was 27, the normal being 37.5..We are now awaiting the results of her CT Scan.She looks and feels healthy.In fact, we have been out going to yard sales all day, just like we used to.She is taking no pain meds now except for her morphine patch, which she has to come off slowly. She has taken 7 treatments of gemzar and 10 days of 100mg Tarceva. When she was told that she only had this amount of time, we refused to give up!! We searched and searched and came across several things.I can't tell you exactly what has worked for her, but something has.I will be happy to give you a list of what she has been taking and/or I will be glad to give you our phone number so we can explain in detail.I am sure that God is the one taking this awful disease away from her, but I can't help thinking that he did it by sending us to the right information. This is a very bad form of cancer with a low cure rate.If your friend is like us, she is probably willing to at least give this a try. We are not selling anything and do not benifit what so ever from this. This is straight from our hearts as we know first hand how this affects you and your family.My heart and prayers are with your friend. God Bless.. Hi how is your mom doing?my husband found out on march 17,2008 that he has pancreatic cancer and it is wrapped around the bile ducts .they had to put in a stint to help with the bile in his system..he has been taking chemo and been on the cancer pills ...today he has a ct scan to see where he is at and also see if he can possible have surgery.i am sure praying for the best here.been really scared my husband has been in hospital 3 different times because of his stint being affected.i sure hope there is hope out there they keep telling me things like this is the worst cancer there is and how 1 out of 5 make it.and i keep saying well he may be a 1 i will not give up at all til its all over..i want the best for my husband unfortunanely we have only badger care ..any help here would be great..thanks and i hope your mom is doing great too..have a great day! shirley daycaremom Tue, 22 Jul 2008 00:00:00 GMT My husband is 39 and was diagnosed 6 months ago with stage 4 pancratic cancer with liver mets.  He had none of the risk factors for this type of cancer and the only symptoms he had were weight loss and backache.  He had been trying to lose weight throught diet and exercise and we thought the back pain was  due to the fact that he stood up all day at his job.  It was a big shock to get the news that he had cancer.  He is on IV chemo (Gemzar) and an oral chemo pill (Tarceva).  We also changed our diet to an all organic, no refined sugars, no processed foods or red mest and no white flour or rice diet.  We juice at home.  He gets a carrott juice and a juice of kale and apple one each per day.  We also strongly beleive in wheatgrass juice which he drinks everyday.  He takes many vitamins and supplements as well.  When we got his diagnosis we also sought out a Natruopathic doctor to advise us along with our oncologist.  We were lucky because our oncologist had no problem with this.  My experience is that insurance usually won't cover a Natruopth because they are considered alternative but well worth it in our opinion.  My husband has made an effort to stay active even when chemo leaves him feeling blah. He takes dailey walks and bike rides. He practices Tai Chi and Chi Gong and he does anything he can to stay positive and make himself feel like his regular self and not a person with cancer.  Staying positive is the key.  My husbands tumor marker numbers started off in the 5000's and are now down to 320 as of last month.  So there is HOPE for this kind of cancer and my advice is to not read any of the statistics because that is all that they are and your son's friend doesn't have to be one of them.There is a book that I really found helpful if your sons' friend is at all interested in nutrtion and diet and the role they can play in dealing with cancer.  It is Beating Cancer With Nutrition by Patrick Quillin.  It is very interesting and informative.Good wishes and best of luckKeri H Keri_H Fri, 20 Jun 2008 00:00:00 GMT I am so sorry.  My brother was told he had pancreatitis in August '07.  He was then told it was panceatic cancer in December '07.  He is only 47 and Caucasion.  Evidently, man, woman, old or young are not exempt from this dreadful disease.  He was not eligible for surgery as it was wrapped around a blood vessel.  (Although I have attended seminars and researched the web, and it seems like you can still have surgery despite this fact. )  He underwent chemo and radiation..and was in a clinical trial..(If your friend's son can be accepted in a clinical trial that is at least a SMALL chance.)  Well, it did not work....he developed a blood clot from the chemo...or the cancer in general....was dropped from the trial...and has to wait TWO MONTHS to see if the blood clot has disappeared...and or the tumor has spread.  (It currently has not spread to any part of his body with the exception of the blood vessel.)   Seems like pancreatic cancer is about the worse one to get....as it takes them an EXTREAMLY long time to finally diagnose it.    He has pretty much been told there is no hope.  He does not accept this...but our family is finally coming to grips with it.    Good luck, I feel your pain........  orchidprincess Fri, 20 Jun 2008 00:00:00 GMT My father was also diagnosed with stage 4b a little over 2 months ago. Since this happened any new treatments I've heard of that seem to be promising are always available to all stages except the one my dad has. Cyberknife, TNferade are both recent treatments showing success. Everywhere I look I get discoursged, any glimpse of hope is soon gone once I find out my father isn't eligible. Not sure if you can relate but I was wondering how your dad is doing and what treatment he may be getting? LYNDSIE Fri, 20 Jun 2008 00:00:00 GMT  On 4/7/2008 daughterofpatient wrote:My dad was just diagnosed staged 4b, anything else you can give me info on I would really appreciate it.  Dont know if you still check this but in case you do I thought I would try.  LYNDSIE Fri, 20 Jun 2008 00:00:00 GMT Hi I'm so sorry about your friend, How considerate of you to make the effort to help. I noticed some of the symptoms your friend was having are very similar to mine. I was told some time ago by a holistic doc that I might have a yeast allergy. After reading up on it on the web & books, I came to the conclusion that I had almost all of the symtoms of a yeast allergy & other food allergies.  Back pain for years, unable to loss weight, rash on my chest, hair loss, constipation, irritable bowel, constant bloated feeling, stomach looked like I was pregnant but I was thin everywhere else etc etc. I decided to go to a Traditional Chinese Medicine doc, who tests for food allergies. He performed Applied Kinesiology testing on me and determined that I was allergic to yeast. It began to all make sense to me. He also determine that the yeast allergy was making me intolerant to many other foods. He told me to go on a strict diet of only organic beef & chicken & organic vegs (mostly green). No bread, flour, sugar, sweetner or yeast of any kind. He put me on chinese herbs & a vitamin called yeast fighter. He also told me to take baking soda (sodium Bicarbonate) & water if I ate anything I was intolerant to. He said this would neutralize the food I was intolerant to, I did this and spent months researching yeast allergies, baking soda & every remedy he suggested. Needless to say I dropped the 20 lbs that I wasn't able to drop for 20 yrs in a matter of 3 weeks. To make a long story longer when I was researching sodium bicarbonate I came across on the web a doctor in Spain that claims he can cure cancer with sodium bicarbonate. He claims that cancer isn't cancer at all but an overgrowth of yeast or Candida (which is an overgrowth of bad bacteria in the body). He also claims that 98% of cancer patients that pass away are loaded with candida or an overgrowth of yeast. I found this very ironic...& remembered that my doctor who studied in China told me to take baking soda. I am no doctor but I do know that 1 in 3 people in the U.S. have a yeast overgrowth & arent' aware of it. Yeast overgrowth is usually caused by too many antibotics or the birth control pill. I also found out that I have had this yeast allergy for almost 20 yrs. & didn't know it. I was diagnosed with Premature Ovarian Failure or (menopause) in my early 20's after 4 yrs of taking Birth Control pills.  I always attributed all of my symtoms to the menopause. I never quite understood why I would have premature menopause as my mom had 7 kids & come from a very fertile family. I always blamed it on the BC pill & with good reason...now I know that it caused the yeast allergy & my doctor believes the yeast allergy caused me to go into premature ovarian failure. You should know that after taking this doctors advise I feel better than I have in 20 yrs. Like I said I'm no doctor but it sounds to me like your friend might have a yeast allergy. Most docs in the US do not diagnose adults having yeast allergies, tell your friend to find a Traditional Chinese Medicine Doc that has studied in China. This doc should also do food allergy testing (not the kind with the skin pricks) Tell your friend to do his research & change his diet & I bet the symptoms will start subsiding. Best of luck to you both. Anne Kathrynmanor Tue, 10 Jun 2008 00:00:00 GMT Here is a hopeful message about pancreatic cancer.  Dr. Freeman recounts a case that exemplifies the center’s team approach to pancreatic care. "Four years ago, a North Dakota woman presented with obstructed jaundice," he recalls. "Her physician tried to do an ERCP catheter and couldn’t, so he referred her to me. I saw her and sent her to Dr. Mallery for an endoscopic ultrasound. He found operable pancreatic cancer. I put a stent in her bile duct to relieve the jaundice, and then she had the Whipple operation at the university. Because the pancreatic cancer cure rate is low and operations are seldom curative, I advised her to move to Minnesota and get aggressive chemotherapy from Dr. Greeno. She had breast cancer as well, so she couldn’t get a formal protocol. Dr. Greeno treated her off protocol with very aggressive chemo-radiation. Today, this woman is alive and doing well with no recurrent disease. She really needed the staging, endoscopic ultrasound, expert surgery and chemotherapy that our team provides. She beat breast cancer and pancreatic cancer; and she only got to us because her physician wasn’t able to get a catheter in her duct. "Stories like this are why we do what we do," Dr. Freeman continues. "We handle the really tough technical cases and difficult disease management, and we offer something unique: expeditious care with the best surgeon, the best GI oncologist, the best endoscopic diagnosis, the best palliation and access to cutting-edge techniques and treatments that aren’t available elsewhere." ...."When the problem is benign chronic pancreatitis and all else fails, our pancreatectomy and transplant options are starting to catch on across the country," says Dr. Freeman. "It’s a very exciting area." Approximately 100 pancreatic resections, 1,200-1,300 EUS procedures and over 100 new cases of chronic pancreatitis are handled at the center every year. Center physicians repeatedly emphasize the importance of their team approach to comprehensive coordinated patient care. "Our vested interest is in the center," says Dr. Freeman, "and in the best possible care for the patient. There’s no vested interest for me to perform one more ERCP procedure. Often, patients come to us when there’s nowhere else to go. Working together, we’ve developed ways to treat patients who’ve been told that there is no treatment.""Each one of us here is really an academic physician," states Dr. Vickers. "That means that first and foremost, we take care of patients. Secondly, we ask questions. Why aren’t our patients doing better? How can we manage them better? How can we detect cancer earlier? Pancreatic cancer is multifactorial. To treat it well, you have to do more than take care of it. You have to ask questions. You see the strength of our conference. It not only gives accurate diagnosis and corrects inaccurate diagnosis, it also provides a unique opportunity for the patient to benefit from a working team of specialists.""I became a doctor to take care of sick people," Dr. Greeno says quietly. "The greatest reward is to care for the sickest, most challenging patients. Pancreatic cancer is difficult and incredibly frustrating to treat. But these are the people who need our help the most." You can read more here.http://www.minnesotaplc.com/Resources/Images/379.pdf Cptmac Mon, 09 Jun 2008 00:00:00 GMT I am an Italian American female who is 47 years old and just had a whipple procedure to remove the cancer from my pancreas. Unfortunately this disease hits people of all age groups and nationality. Nikjo28 Mon, 09 Jun 2008 00:00:00 GMT I see your email is dated quite a while agoWhat is the update My spouse was just diagnosed--we are having a Petscan today and a bone test on Thursday How did you keep yourself together so as to help the patient I hope all is wellcarol b gray carolbonessa Mon, 09 Jun 2008 00:00:00 GMT If this helps, my father was diagnosed with this on the 16th February, 2008 and now has had the Whipple Procedure and returned home.  He is doing very well.  He is 70 years old and lives in Johannesburg, South Africa.  Please tell your son to let his friend know that it is all to do with the mind and he must remain positive and accept what he has and remember that Power of the Mind and prayer help all.  I honestly though that my father would never return home and recover the way he has.  If he can do this at 70 your sons friend will do this with no trouble at all.  I hope that what ever he has to go through will go well and will pray for him.  God Bless you all. dereksdaughter Sat, 10 May 2008 00:00:00 GMT This is a message for everyone with pancreatic cancer.  I have not read all of the messages on this website related to pancreatic cancer, but I do know that M.D. Anderson Cancer Center in Houston, TX is the number 1 cancer center in the country.  I have been a patient there for 36 years when I had been diagnosed with a large inopperable tumor in my abdomen.  I think it might be wise to contact MDACC to find out if there is anything that they would recommend.    gerose71 Thu, 08 May 2008 00:00:00 GMT My boyfriend is 29 and was recently diagnosed with pancreatic cancer.  It was said to be stage 1, and he just had surgery that removed two very small tumors (a combined size of less than 1 centimeter) from the distal part of his pancreas.  His biopsy directly after the surgery said that he had no more cancer, but he went in today for a checkup and they told him he would have to go through chemotherapy to kill cancer cells before they get into the bloodstream and/or lymphnodes.  Is this common? Is it possible the cancer has already spread to the bloodstream?  How long before it does spread if it hasn't?  What are his chances of survival? And what could have caused it.. he's so young? It sounds like a similar situation; it's so odd with someone who is so young and healthy.  Do you have any ideas on why someone like him could get this? Will he have to fight this for the rest of his life? If anyone has information pertaining to this, could you fill me in on information i should know?  Thanks a ton.  jacqusmack Thu, 08 May 2008 00:00:00 GMT  On 1/9/2008 wishful wrote: On 11/9/2007 Crazzmom wrote:Hello.My mother was diagnosed with pancreatic cancer about 6 months ago and it was inoperable.The oncologist gave her 6 months without chemo and maybe 12 to 14 with chemo.It has been 6 months now and she is doing great.In fact, her CA-19-9 this week was 27, the normal being 37.5..We are now awaiting the results of her CT Scan.She looks and feels healthy.In fact, we have been out going to yard sales all day, just like we used to.She is taking no pain meds now except for her morphine patch, which she has to come off slowly. She has taken 7 treatments of gemzar and 10 days of 100mg Tarceva. When she was told that she only had this amount of time, we refused to give up!! We searched and searched and came across several things.I can't tell you exactly what has worked for her, but something has.I will be happy to give you a list of what she has been taking and/or I will be glad to give you our phone number so we can explain in detail.I am sure that God is the one taking this awful disease away from her, but I can't help thinking that he did it by sending us to the right information. This is a very bad form of cancer with a low cure rate.If your friend is like us, she is probably willing to at least give this a try. We are not selling anything and do not benifit what so ever from this. This is straight from our hearts as we know first hand how this affects you and your family.My heart and prayers are with your friend. God Bless.. My father in law was diagnosed with pancreatic cancer stage iv on dec. 14, 2007. he is also on Tarceva and Gemzar what other methods of cure has your mother use. Thank you for the information. Happy to hear your mother is doing fine.  hi, my mom was diagnosed this Feb with stage 4 pc that spread to her liver.  she has lost a  lot of weight and her eats very little. she starts Gemar and Tarceva this Friday and i am so concerned that she will get real sick.  She seems to think that this will cure her.  i don't have the heart to tell her something different.  let me know what to expect.  my heart is so heavy...  Paula Paula722 Wed, 09 Apr 2008 00:00:00 GMT My dad was just diagnosed staged 4b, anything else you can give me info on I would really appreciate it.  Dont know if you still check this but in case you do I thought I would try. daughterofpatient Mon, 07 Apr 2008 00:00:00 GMT On 3/24/2008 Paula722 wrote: On 10/4/2005 gi gi wrote:My mother just got the horrible news today that she has pancreatic cancer. She saw her father die of the same disease 30 years ago and she has always lived in fear of cancer. She is 62 and very young and active for her age. We don't know what type or stage the cancer is as we are waiting for her to see a specialist. I don't know if I am strong enough for what lies ahead. My daughter passed away 2 years ago this Sept 23rd. I haven't come to terms with her passing yet. The worst part that I remember when Grandpa had this cancer was seeing him waste away quickly before my eyes. I don't want my mom to go this way! I am afraid of what she might experience in the time she has left. She is confused about what to do. She doesn't want to suffer through chemo. Her symptoms are upper right abdominal and back pain, weight loss, and fatigue. She says she hasn't felt good for almost a year. I feel so helpless. Gi Gi Hi Gi GI,i am new to this site and sadly i now how you feel about seeing your mom go through this horrible disease!  my mom was just told she has pc stage IV that spread to her liver.  it is a nightmare. my  mom's mother also had pc and died at 66 yrs old.  Now my mom at ager 70 is going through it all over again.  my mom has lost so much weight that her skin hangs on her bones..  She is dying in front of us.  Her pain seems to be getting worse and she can't eat much. she wants to try chem next week but i am afraid that will kill her faster.  i have two small children and i am so consummed with her and don't want my children to see her suffer as i did my grandmother.  i wish i could give you some advice but i feel lost myself.Paula Hi Paula, I am sorry you have to go through this! My grandfather had chemo and he lived 4 months. My mom didn't have chemo and she lived 3 months and had major pain. My grandfather didn't have so much pain. I think that the chemo might be helpful in keeping the level of pain down. My mom died 3:30am Christmas Eve 2005. I hope that no one else in my family gets this terrible disease. Stay strong, Gi Gi gi_gi Tue, 25 Mar 2008 00:00:00 GMT On 1/6/2004 Marian B. wrote:My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian hi marian, from what i have read, these cancers have appeared in all age groups. www.cancercare.org has a lot of positive posts by people of all ages, some as young as 22 with pancreatic cancer. I am 46 and was just diagnosed with pancreatic neuroendocrine tumor. I thought I was too young too but cancer doesnt discriminate unfortunately. xo candye candye Tue, 25 Mar 2008 00:00:00 GMT  On 6/9/2005 Ayaman wrote:Hello I am from Spain and my mother has been having pancreatic cancer for the last 6 years, which is incredibly unusual. The doctors give her 6 months to live. We have tried all treatments on the market and nothing has worked. But we are a family of fighters. Last week there was a very big thing about cancer on the news: a spanish scientist (he is a mathematic!!!) named Antonio Bru, has developed a theory about the dynamics of tumor growth, and basing all his studies on a mathematical formula he has cured 2 terminal cancers in 8 weeks with a treatment that empowers your own defenses to fight the tumor. Since there is nothing the doctors can do for her, I have managed to contact him, and I have found an incredible person that wants to help people and everything for free as he thinks what he has discovered is too big to leave it only for the rich. I have managed to get the medicines for her and we are going to start the treatment next Friday. Even though Mr. Bru cannot guarantee anything, he strongly thinks pancreas cancer CAN BE CURED, I will keep you posted if we cure her and will tell everybody exactly what to do. Pray for me. This is not a fraud, I have met the man and he is a very good person. If we manage to cure her, I will dedicate my life to help people with cancer, as I know first hand how horrible this can be. I also have read thousand of pages on pancreatic cancer and know everything about the latest chemotherapies available. If you need advice you can post a message and I will check it. Never stop fighting!!!!!!!!!!Ayaman,your words are incouraging.  my mom was just told she has stage 4 PC and my grandmother passed at 66 from it.  we are devastated to say the least.  my family was also diagnoised with Lynch Syndrome which involves the likelyhood of getting many different types of cancer at a very young life.  my aunt at 70 had stomach cancer , her daughter at 52 had stomach and her other daughter at 53 had uterine cancer.  this is destroying our family.  so any info you could offer would be greatly welcomed. Thanks Paula722 Mon, 24 Mar 2008 00:00:00 GMT  On 10/4/2005 gi gi wrote:My mother just got the horrible news today that she has pancreatic cancer. She saw her father die of the same disease 30 years ago and she has always lived in fear of cancer. She is 62 and very young and active for her age. We don't know what type or stage the cancer is as we are waiting for her to see a specialist. I don't know if I am strong enough for what lies ahead. My daughter passed away 2 years ago this Sept 23rd. I haven't come to terms with her passing yet. The worst part that I remember when Grandpa had this cancer was seeing him waste away quickly before my eyes. I don't want my mom to go this way! I am afraid of what she might experience in the time she has left. She is confused about what to do. She doesn't want to suffer through chemo. Her symptoms are upper right abdominal and back pain, weight loss, and fatigue. She says she hasn't felt good for almost a year. I feel so helpless. Gi Gi Hi Gi GI,i am new to this site and sadly i now how you feel about seeing your mom go through this horrible disease!  my mom was just told she has pc stage IV that spread to her liver.  it is a nightmare. my  mom's mother also had pc and died at 66 yrs old.  Now my mom at ager 70 is going through it all over again.  my mom has lost so much weight that her skin hangs on her bones..  She is dying in front of us.  Her pain seems to be getting worse and she can't eat much. she wants to try chem next week but i am afraid that will kill her faster.  i have two small children and i am so consummed with her and don't want my children to see her suffer as i did my grandmother.  i wish i could give you some advice but i feel lost myself.Paula Paula722 Mon, 24 Mar 2008 00:00:00 GMT Hi, I am a six year pancreatic cancer survivor, I'm only 34 years old.  Hispanic male.  I wad diagnosed when I was 28.  Was initially told I had innoperable cancer and was not even going to be given chemo or radiation, I was given 6 months to live.  It turned out, by the grace of god, that I had neuroendocrine cancer, not adenocarcinoma.  I am poisting this in hopes that I can give hope and encouragement to fight this horrible disease.  I had the whipple surgery in July 07, due to stents that were placed several years ago.  I'm struggling a bit with diet and weight loss, any advice on diet and nutrition would be appreciated. jetblueshark Wed, 19 Mar 2008 00:00:00 GMT  On 1/6/2004 Marian B. wrote:My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian HI there, I am 34 years old, female, live in Winnipeg, Manitoba, Canada.  I have no family history of cancer in my family, I am a non-smoker, non-drinker, and I too had a tumor in my pancreas.  Although I grew up with a father who smoked.  Doctors found a tumor Jan. 3rd/08, I had my surgery Feb. 29th/08 where doctors performed a partial whipple procedure to remove the tumor.  I am waiting for the pathology report and will find out more in several weeks.  I was told it is a neuroendocrine tumor, located in the neck of the pancreas.  I have learned that this can occur to anyone at any age.  I too was told that it is rare considering my age and health, so they told me they will do everything to study my case.  The only advice I can give you is that your son's friend should see the doctor, specialists and meet with a surgeon to discuss the best options for treating his cancer.  The sooner the better.  These tumors grow. Hope this helps.  If he wants, he can email me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--  if he has any more questions.  I'd be happy to help.  Good luck.    Eriko Tue, 18 Mar 2008 00:00:00 GMT  On 1/9/2008 wishful wrote: On 11/9/2007 Crazzmom wrote:Hello.My mother was diagnosed with pancreatic cancer about 6 months ago and it was inoperable.The oncologist gave her 6 months without chemo and maybe 12 to 14 with chemo.It has been 6 months now and she is doing great.In fact, her CA-19-9 this week was 27, the normal being 37.5..We are now awaiting the results of her CT Scan.She looks and feels healthy.In fact, we have been out going to yard sales all day, just like we used to.She is taking no pain meds now except for her morphine patch, which she has to come off slowly. She has taken 7 treatments of gemzar and 10 days of 100mg Tarceva. When she was told that she only had this amount of time, we refused to give up!! We searched and searched and came across several things.I can't tell you exactly what has worked for her, but something has.I will be happy to give you a list of what she has been taking and/or I will be glad to give you our phone number so we can explain in detail.I am sure that God is the one taking this awful disease away from her, but I can't help thinking that he did it by sending us to the right information. This is a very bad form of cancer with a low cure rate.If your friend is like us, she is probably willing to at least give this a try. We are not selling anything and do not benifit what so ever from this. This is straight from our hearts as we know first hand how this affects you and your family.My heart and prayers are with your friend. God Bless.. Other than the chemo can you elaborate on what other treatments she had?  Was it holistic?My husband has PC with mets to the liver.Thanks for any help you can give us.Eliza  SamanthaBradley Thu, 13 Mar 2008 00:00:00 GMT Hi, My Mum has just been diagnosed with PC and hs just had a stent insertedto bypass the tumor.  At this stag there is no hope of surery. I too have seen much information regarding the Dr Budwi diet, although I remain opn minded, I can not really find any negative information on this.  I would be very keen tolearn f anyone has tried and had good results or is this simply too god t be true. This is my only hope Paul fire4498 Mon, 03 Mar 2008 00:00:00 GMT I was diagnosed in August,07, and have been going to CTCA since the end of Aug. This is the most wonderful loving place in all the world and I have received the best care. Not only do they treat the cancer with Tomo radiation and chemo, they treat the mind, body, and soul. Everyone is so friendly, lots of hugs, and prayers. Don't give up and try to keep a positive attitude and know that this is treatable. My Dr. had said that surgery was out as I would not survive it. I feel so good and the cancer markers in my blood keep coming down and no cancer showed up on the scans. I have three more chemo treatments and another round of scans to see if I can come back every three months or what . joyce3 Thu, 28 Feb 2008 00:00:00 GMT I live in burlington Vt, They were doing a studyfor pc. diringt their study they diag. a 20 yr. with pc! thank God for the study, and saving this young man's life! RandiVt Tue, 19 Feb 2008 00:00:00 GMT  On 11/9/2007 Crazzmom wrote:Hello.My mother was diagnosed with pancreatic cancer about 6 months ago and it was inoperable.The oncologist gave her 6 months without chemo and maybe 12 to 14 with chemo.It has been 6 months now and she is doing great.In fact, her CA-19-9 this week was 27, the normal being 37.5..We are now awaiting the results of her CT Scan.She looks and feels healthy.In fact, we have been out going to yard sales all day, just like we used to.She is taking no pain meds now except for her morphine patch, which she has to come off slowly. She has taken 7 treatments of gemzar and 10 days of 100mg Tarceva. When she was told that she only had this amount of time, we refused to give up!! We searched and searched and came across several things.I can't tell you exactly what has worked for her, but something has.I will be happy to give you a list of what she has been taking and/or I will be glad to give you our phone number so we can explain in detail.I am sure that God is the one taking this awful disease away from her, but I can't help thinking that he did it by sending us to the right information. This is a very bad form of cancer with a low cure rate.If your friend is like us, she is probably willing to at least give this a try. We are not selling anything and do not benifit what so ever from this. This is straight from our hearts as we know first hand how this affects you and your family.My heart and prayers are with your friend. God Bless.. My father in law was diagnosed with pancreatic cancer stage iv on dec. 14, 2007. he is also on Tarceva and Gemzar what other methods of cure has your mother use. Thank you for the information. Happy to hear your mother is doing fine. wishful Wed, 09 Jan 2008 00:00:00 GMT My father in law was diagnosed with pancreatic cancer. He had no appetite and I was told about a tea called Flor Essences that would help get his appetite. Flor Essences are sold in nutrition stores the 32 oz is approximately 40 dollars. It is worth every single drop of the tea. My father in law now has appetite and he is not losing much weight as he did. wishful Wed, 09 Jan 2008 00:00:00 GMT  On 1/6/2004 Marian B. wrote:My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian My Husband had the whipple procedure in May 2004, as soon as he was diagnosed we went right to U of M where they have a pancreatic center and much more knowledge than our local Doctors and Hospitals.  My advice is to go to the best facility you can find, and keep a positive attitude, be proactive and be your own advocate.  Take care lisajspin Mon, 07 Jan 2008 00:00:00 GMT Hello.My mother was diagnosed with pancreatic cancer about 6 months ago and it was inoperable.The oncologist gave her 6 months without chemo and maybe 12 to 14 with chemo.It has been 6 months now and she is doing great.In fact, her CA-19-9 this week was 27, the normal being 37.5..We are now awaiting the results of her CT Scan.She looks and feels healthy.In fact, we have been out going to yard sales all day, just like we used to.She is taking no pain meds now except for her morphine patch, which she has to come off slowly. She has taken 7 treatments of gemzar and 10 days of 100mg Tarceva. When she was told that she only had this amount of time, we refused to give up!! We searched and searched and came across several things.I can't tell you exactly what has worked for her, but something has.I will be happy to give you a list of what she has been taking and/or I will be glad to give you our phone number so we can explain in detail.I am sure that God is the one taking this awful disease away from her, but I can't help thinking that he did it by sending us to the right information. This is a very bad form of cancer with a low cure rate.If your friend is like us, she is probably willing to at least give this a try. We are not selling anything and do not benifit what so ever from this. This is straight from our hearts as we know first hand how this affects you and your family.My heart and prayers are with your friend. God Bless.. Crazzmom Fri, 09 Nov 2007 00:00:00 GMT I am so sorry. My husband was diagnosed 1 yr and 2 months ago with inoperable pancreatic cancer. We went to Mayos and they gave him 6 months. So far he is doing ok. First took 5 weeks of radiation and 5-FU and the tumor shrunk 50 % he was feeling really good. Then Gemzar and Tarcevia. Still no change in tumor size and his CA-19 -9 keeps going down. Then Cisplatin and Gemzar. He is now on Xeloda a chemo pill and doing so so.  This is a terrible disease and I can just tell you to find a good Dr. get 2nd opinions talk to people and search the internet. And try and have faith I know it is hard sooooo hard. My husband has a wonderful Dr. now and we have total faith in him and his knowledge. The norm for this disease is heavy smoker and drinker over 60 yrs. old and he is none of these things He just turned 40 the first part of this month. None of this is fair but if there is anything I can help you with please let me know.  Like i said he is doing good now and just get all the information you can and find a good Dr..  Lisa21 Sun, 28 Oct 2007 00:00:00 GMT hi i was diagnosed with stage 4 pc aug 05.i had whipples sept 05.at age 31 he should try for whipples there is hope!!!!!!!On 1/6/2004 Marian B. wrote:My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian   maggieoz Thu, 18 Oct 2007 00:00:00 GMT My mother died of the disease at 69, a year after diagnosis in March of this year. If it's in the lymph system, it's pretty grim but if it hasn't metastasized somewhere, he may be able to get on some agressive chemotheraphy that could help. I'm not sure where you live but on the East Coast, there are specialists at Johns Hopkins, Columbia-Presbyterian, and Dana Farber. Good luck. I also want to mention I started a small business to fund pancreatic cancer research. Check out the website - it's based on my mother's artwork - www.yscards.com. Ridge Sun, 16 Sep 2007 00:00:00 GMT  On 5/30/2006 Mary Ann mc wrote:My 45 yr old husband dx with pc in November 2005, and we started going to CTCA in Tulsa and then transferred to PA,,what a GREAT organization. I would highly recommend anyone who has cancer to give them a try.We are considering CTCA. in Tulsa.  May I ask why you tranferred to Pa? kate2113 Thu, 16 Aug 2007 00:00:00 GMT  On 10/4/2005 gi gi wrote:My mother just got the horrible news today that she has pancreatic cancer. She saw her father die of the same disease 30 years ago and she has always lived in fear of cancer. She is 62 and very young and active for her age. We don't know what type or stage the cancer is as we are waiting for her to see a specialist. I don't know if I am strong enough for what lies ahead. My daughter passed away 2 years ago this Sept 23rd. I haven't come to terms with her passing yet. The worst part that I remember when Grandpa had this cancer was seeing him waste away quickly before my eyes. I don't want my mom to go this way! I am afraid of what she might experience in the time she has left. She is confused about what to do. She doesn't want to suffer through chemo. Her symptoms are upper right abdominal and back pain, weight loss, and fatigue. She says she hasn't felt good for almost a year. I feel so helpless. Gi Gi Gi Gi, I sympathize with you.  First it was my grandmother, and then her son, my father.  My father foundout May 4, 2007.  We found through surgery that it had already spread to his liver.  He is now at home with hospice.  We have already seen the decrease in body weight and the weakness.  Please remember that the process is about your loved one, and you must do what you can to help him or her through this terrible journey.  My dad has good days and bad days.  Sometimes he has water, ensure or boost.  Other times he wants nothing.  The hardest part is seeing what the morphine is doing to him.  He is in a fog that may never lift.  My dad has always been articulate, logical, and decisive.  He is now anything but these three qualities.  Prayer helps, as does patience. Brookesson Sun, 01 Jul 2007 00:00:00 GMT Hi Marian, Im sorry to hear about your sons friend.  I dont know much about US Im in Scotland, I had PC last June it was a rare type - neuroendocrine in the tail of the pancreas and I had an op to remove it.  There didnt appear to be any spread so I havent had any follow up medicine. There are good stories out there! Do you know where in the pancreas and the size of the tumour/s involved, are they planning to operate? I recently read that over here they can do a High Intensity Ultrasound that delivers and kills the cancer right where it is it is usually used in chordomas of the spine but can be used to help relieve the pains associated with pancreatic cancer.  It is only available here privately the web address for it in the uk is http://www.hifu.cancertreatment.co.uk/  there you may be able to read and see if it may be suitable.  I also visit a very useful site in the uk http://pancreaticcancer.org.uk its very informative and you can meet others and discuss treatment/surgery.Wishing him all the best for his treatments, Lynn Looloo1 Sat, 30 Jun 2007 00:00:00 GMT My Mother was also diagnosed with Ca. Pancreas last year in July. She has taken a round of Chemotherapy and a Combo treatment of IMRT with concurrent Chemo (Gemzar). Her tumor is unresectable. There are many treatment options available which can buy lot of time. Gemzar for Chemo and a new drug approved last year for Ca. Pancreas called Tarceva are the most promising treatment options available. -Anandh Anand Mon, 11 Jun 2007 00:00:00 GMT      Best of luck.  The best thing you can do is offer strong support for the patient.  I know from experience.  I am 45year olds old and a mom of two. I have been fighting pancreatic cancer since 2000.  I am going well and continue treatments every three weeks.  I think it will be a never ending story.        It can be quite a shocker with that diagnosis.  But I have had four surgeries to correct the problem.  I had the largest tumor my doctor had ever sceen measuring about 1 1/2 fists.  So it they can keep me ticking there are many possibilities for everyone else.  I think half the solution is the doctor and the other half is patient determination.  By far the thing that saved me is all my family and friends.  They were determined that I would be OK .  Now I just view my self as a "work in progress."  I am still fighting five tumors but I don't worry.  You get used to them just being a part of you.       My original doctor thought I would be dead within 2 years.  I wasnt hard to imagine that I got a new doctor.  Currently I am a Moffitt patient in Tampa.  I love my oncologist.  Just trust yourself and decide who is the best doctor to map out your gameplan and follow the instructions to the T.       The best thing to do for your friend is to keep them positive.  Everyone has a pitty party every once in awhile but mostly you need to keep positive and don't let the cancer be the main focus of your life.  Enjoy every day and always know there are more who are sicker than you.  I also liked having a cancer buddy who I could compare notes, emotions, and health with.  PanCan offers support for patients and caregivers.  They are wonderful.  Give them a try.  They have educational material and also contact people who can give you advice.ToodlesBeth         Dog_Lover Sat, 02 Jun 2007 00:00:00 GMT Please help me.  I am grabbing at straws.  My close friend was diagnosed end-stage IV PC in February, 2007.  I am 59 years old, running from my house to her house, going to a full time job, helping with her six year old son.  I am tired every day.   They were unable to operate.  The tumor had attached itself to major blood vessels and engulfed the tail of the pancreas and the main duct where the blood supply enters, etc.  It is sad.  I want hospice but, she feels she can take care of herself.  What should I do? Maryvan59 Mon, 14 May 2007 00:00:00 GMT Your email is encouraging to me.  I have a close friend that was diagnosed with PC in February, 2007. She is on Tarceva with Gemcidibine.  Is everything going well for you now?  Her's had gone to the liver also.  Please email back.   Mary    Maryvan59 Mon, 14 May 2007 00:00:00 GMT  On 1/6/2004 Marian B. wrote:My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian My goddaughter is 44, sbfemale, w/a 7 year old son.  She does not have diabetes.  She was a smoker, but not a heavy smoker.  I am so sorry to hear about your son's friend.   This is very hard.   Mary  Maryvan59 Fri, 11 May 2007 00:00:00 GMT Hello Marian,I am a white female 45 years young who was diagnosedMaech 17 with Pancreatic Cancer! I was so suprised...as I have always been very health otherwise. It is true that for the most part this disease hit's older adults in the 60's and 70's however I did not hear that this was a disease for Americans of color. I had what was called the whipple surgery. my cancer was self contained at the head of the pancreas..which made it hard for the Dr's to reach. Removing a portion of my stomach and the tumor was needed to have a fighting chance at surival. I am 7 weeks post op now..and will begin chemo- and radationearly next month a five-six week treatment every day.as for your sons friend and his lymph nodes, 1 of mine came back positive out of 20 on me....I also did not have diabetes untill AFTER my surgery. Tell me more about this young man..and perhaps I can help him as others has helped me spiritialy,and emotionally. Ty HoysradtOn 1/6/2004 Marian B. wrote:My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian   Armymomajh87 Fri, 27 Apr 2007 00:00:00 GMT Bethinne:I am reading your message and my heart goes out to you.  We lost our dear husband, father, brother, uncle and son to this terrible disease on August 1, 2005 - less than five months from when he was first diagnosed.  He gave it a good, strong fight, though.  We knew it was difficult news from the first day.  Dale chose aggressive treatment, and fought to be on his feet everyday.  Some days were just too difficult for my strong husband, though.  As his wife, I insisted that he share the prognosis with the family.  Although the doctor never gave us a timeline, we knew it was serious, so about 6 weeks into treatment (after the diagnosis), we sat the kids down and had a heart-to-heart.  They will tell you today, it was a hard day for them, but they will also tell you how much they appreciated be part of the process.  Each child has reacted differently to his death - - part of their own spiritual growth - - but we have muddled through pretty well.  Dale is still very much a part of our daily life.  We laugh when we think about how much he would have enjoyed this or that; we cry that he's not with us to share the experience; and we say "hello" "goodmorning" and "goodnight" to the multiple pictures around the house.  Our middle daughter has taken Dale's favorite antique desk and made it into a Dale shrine - that's her way of dealing with the grief.  I can't tell you that hospice is easy - its not.  But the caregivers who were there for us helped.  We were officially in hospice only one week before Dale died.  He was at home, surrounded by his kids and me (and lots of friends during the days) - and when he died, it was in the middle of the night next to me.  His spirit filled the house.  We have always felt honored to have had him with us until the very end.  The hospitals were so sterile.  Home is where we should be when we breathe our last breath. I suggest you check our PanCan - a truly important advocacy organization for continued research on pancreatic cancer cures, treatments and prevention.  www.pancan.org.Enlist your friends and family to surround you with love and support.  Your most important roll now is to help your husband pass with dignity and to help your children say goodbye.  These are not easy times for you, but you will remember them with great honor.  We are blessed to be there at the birth of life; it is an equal blessing to be there as the candle of life is extinguished.  Post again and I'll respond.  Karen_p_5 Thu, 26 Apr 2007 00:00:00 GMT  On 4/28/2005 Karen p wrote:I am new to this board - my husband was diagnosed with stage IV non-operable pancreatic cancer in March, 2005. He is 57. He presented with what was initially diagnosed as diabetes in November, 2004, and treated incorrectly for this disease. His abdominal pain continued and increased until it was unbearable. Finally, after admission to the hospital, and a CT scan, it was clear: a 12cm tumor in his pancreas, with masses in his lymph nodes, outer stomach lining and liver. A needle biopsy on his liver was performed to confirm the diagnosis. He started chemo a week later, which he's had for the last six weeks. Its been terrible. He's scheduled for another 6 weeks of chemo starting May 9, but we're considering bypassing it. At this point, he can't take anything orally because it comes back up 30 minutes later. He has a pic line and gets two liters of liquid diet every night through the pic line. I also admister morphine as needed through his pic line - and he is up to 4 morphine patches. We are trying to keep him comfortable and out of pain. Its been a struggle dealing with this, especially with our children at home: 10, 11 and 13 years old. Our 23 year old moved home to be with us. My question - is it a good idea to keep him at home as he progresses to hospice? Will it be too hard for our kids? Any comments are appreciated. i just found this web site and i am in the same situationi have small children 12, 15 we have stopped treatments and went to hospice and it scares the hell out of me.i see you sent this message quite some time ago i am interested in how your situation turned out thanks Bethinne Tue, 24 Apr 2007 00:00:00 GMT Hello,My Father was diagnosed with stage !V PC in November. They discovered it when he underwent a minor hernia surgery. He started chemo with Gemzar the next day. He had 14 chemo treatments.  He just started the Rexim G clinical trial in Rochester at the Mayo Clinic. He is in his 2nd week of treatment.  He is tolerating the treatment well with no side effects other that being a little tired. At first I was just praying that my Dad would be comfortable and have no pain. Now I'm praying for a cure. My Dad is hopeful and so am I. This is my first post on this board.How is your loved one doing?   Robin  Rodneys_Daughter Wed, 18 Apr 2007 00:00:00 GMT My father was recently diagnosed.  We are waiting on feedback from the doctor regarding the stage of the cancer.  I do not know how to help my mother.  My father has been sick for over a year.  I fear that the prognosis will not be positive.  She is already tired and stressed.  My father's faith keeps him going.  Do you have any suggestions on how to help my mother from your experience? Oblivious Mon, 09 Apr 2007 00:00:00 GMT I had just recently signed up here at CancerCompass, right after I had read your posting.  I know it was dated sometime ago, but I wanted to let you know how much I have enjoyed it and hold on to it.  You see, about 2 weeks ago my dad went to the hospital after experiencing 2-3 months of abdomin pain, once admitted we thought it was the gallbladder.  Then we got the devastating news.  They found lumps on the liver, and then after a CT scan and a biopsy.  It was confirmed cancer in the pancreas that has spread to the liver.  It is such a long haul already and it's only been 3 weeks.  We have read so much and studied so much and are trying to understand this disease.  On his first stay in the hospital I gave him my yellow LIVESTRONG bracelet to hold onto.  I wear my pink cancer cure one, as he wears that one.  So needless to say as we proceed down this path we hear all sorts of stories with not the best endings, then we hear the off one with an outstanding glimmer of hope.  Such as your message did for me.  I can't tell you how much I appreciated it and am holding onto, becuase I know there is hope, and as we pray and keep our spirits high there are people just like us going through this as well. I just wanted to say thanks for reminding me of faith, hope and to keep positive.  Take care! Fightinghard Mon, 26 Mar 2007 00:00:00 GMT  On 1/6/2004 Marian B. wrote:My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian HI. My mother - american Jewish, from askinazi decent- Eastern european , 61 yrs old- same diagnosis, diabetic.  Not operable at this time, suggesting aggressive chemo therapy. spread to the stomach area of the lymphnodes Going for 2nd opions this week.  What have you done so far? Mylisslynn Wed, 28 Feb 2007 00:00:00 GMT  On 5/18/2005 Annettedb wrote:My Mom was in Florida this winter and I visited her in the middle of February....she complained of feeling tired and I noticed she wasn't eating as much as usual. She came back to Jersey on March 17th and I decided to take her to the hospital on March 20th because she was pretty tired and out of it. She complained of some travelling pains through her body and pains beneath her breasts. They found through her blood her liver enzymes triple what they should be and after a CT Scan found a large tumor on her liver coming from stage 5 pancreatic cancer. She passed away on May 11, 2005. I was with her non-stop from the minute of being told of the spread to her liver until the minute she passed. She was 76, white, never smoked, and otherwise basically healthy and full of life. I never knew that because a 76 year old women feels tired that it would mean she'd be dead in 2 months. I am destroyed by this and in need of help. She was my best friend. I can't believe something like this could happen but I know by talking to people that it's not that unusally with this type of Cancer. I have prayed but sometimes I feel so lost. It is a horrible illiness.My father in law to be was diagnosed with pancreatic cancer stage 4, metastisis to liver, stomach on january 3, 2007. We made arrangements to go to the local cancer center here in houston, and he recieved his first chemo treatment on 01/12/07. It was debilitating, as we had expected, but he was not down for the count. On 01/19/07 he went to see his doctor, and was put on morphine patches for pain, as he was in excrutiating pain and had been for some time. Today is 01/20/07, and he has gone down his extremely in the last 24 hours. He is set to fly to Illinois treatment center on Tuesday, but at the rate he is progressing, i fear he will not make it there. His wife is in total denial, and is having a very hard time of it, despite her family and friends trying to help her. He is having trouble realizing that he cannot get up and walk on the morphine, he cannot function as he normally did, and while he is on the morphine he is not understanding this when we tell him. I have contacted the ctc and explained this to them, but unfortunatley the caseworker handling our case, will not be in until monday. I want to make special travel arrangements for him. He cannot function without the morphine, but he cannot travel having the trouble he is having. I feel like im in a catch 22 here.Ctc is our last hope. It is all we have left. The doctors here say " get your affairs in order, and wait" ctc has offered hope, and it is in our grasp, but how do we make it to the center with him in this condition? How do I help his wife come to terms with the fact that her husband has cancer, a serious cancer, that could and will kill him eventually. We sleep in shifts, 4 hours at a time, we constantly care for him, and his needs, what else can we do?lost and loosing hope,sissy Sis1373 Sat, 20 Jan 2007 00:00:00 GMT  On 11/21/2005 Jeanniec wrote:My uncle who is a healthy, non smoking, active 60 year old was diagnosed in june with inoperable pancreatic cancer. He was sent home with a pat on the back. I did research and found good things on Essiac tea and the Budwig diet. Even though he isn't into herbal medicine, he started on 4 oz. of essaic(ordered from "anursestea.com" or something similar, you can find it on the essiac site), and 4 oz. of flax seed oil in cottage cheese per day. He just went back for his four month check up and the tumor was almost gone! You should check it out. Good luck!  Garagegirl Wed, 10 Jan 2007 00:00:00 GMT How is your mother doing today? Laura2255 Thu, 04 Jan 2007 00:00:00 GMT Hi! I just read your post and wanted to write back. How are you doing today? Which chemo regimens are you on? My dad is 54 and his tumor is in the head of this pancreas as well but is unresectable b/c he has a tiny malignant lesion on his liver. I'd love to hear how you're coping. That's great they were able to perform surgery! Laura2255 Thu, 04 Jan 2007 00:00:00 GMT Hello, although your message is dated, I'm interested in your progress and treatment..thanks..Marcie Marcie77 Tue, 19 Dec 2006 00:00:00 GMT I'm new to this website and I see your entry is old, but I'm curious how are you doing? Marcie77 Tue, 19 Dec 2006 00:00:00 GMT My mum has recently been diagnosed with inoperable pancreatic cancer and of course I am trying to find a cure for her as I cannot bare the thought of her not being in my life. I have just read your message and appreciate that it was posted quite some time ago but I would very much like an update as to how your mum is and how her treatment has gone on. Jacqueline Sat, 16 Sep 2006 00:00:00 GMT I have seen several messages from you on this message board. If you are still "out there", please contact me back. I want to find out about people's experiences with Dr. Bru's new regimen. The initial results were good, and there have been several messages where people had gotten authorization, and were planning to try the therapy. Do you know about the results for these people, or any information on clinical trials, since his initial cures? Obviously, I am interested since I also have pancreatic cancer, and am looking for solutions. Thank you. Ann Tnbiker Thu, 20 Jul 2006 00:00:00 GMT Hi Barry you wrote about your recurrence of pancreatic and being on Tarceva. I was just curious how you are doing. My mom's diagnosis and surgery were June '05 then 5 months chemo/radiation/chemo. She was in remission until yesterday when we got word that her CAT scan has shown some marks on her liver. The doctor talks about chemo and some oxyilplatin (SP?) to try and control it. she has a PET scan soon to confirm what is going on. I guess I knew it would come back. I was just hoping for a longer remission to get her mental and physical strength back. But don't we all? My prayers are with you. Brigid Brigid Thu, 29 Jun 2006 00:00:00 GMT Our doctor told us that most GPs dont suspect pancreatic cancer. they treat for ulcers or gerd and keep trying till its in the critical stage. My wife was extremly lucky her doctor was on vacation, the GP who was covering for her, started with the prevacid, and also orderd a scope. Two days later after the scope the surgeon ordered a ct scan right away, hours later while we still in our local hospital, he called and said to get an immediate MRI, all this in one day.Three days later he made an appointment with a specialist at the Uof Louisville hospital, they did another scope with a biopsy, and told us it was cancer, one week later she had the wipple procedure, it has been a little over two months now, she is working in ther garden, goes to the heath center for tred mill walks, and has refused any chemo.We were told that the quick action of our primary care doctors was the best thing that could have happened.Many doctors are unaware of the serious nature of pancreatic cancer, and treat the other symtoms till its too late. Kygorsk9i Thu, 15 Jun 2006 00:00:00 GMT My 45 yr old husband dx with pc in November 2005, and we started going to CTCA in Tulsa and then transferred to PA,,what a GREAT organization. I would highly recommend anyone who has cancer to give them a try. Mary_Ann_mc Tue, 30 May 2006 00:00:00 GMT My husband was dx. with pancreas cancer in July of 2003 at the age of 46. He was in stage IV. But, we decided he wanted to get another opinion and we decided to go to MD Anderson Cancer Center in Texas. We are from Indiana and my husband decided he wanted to fight this terrible disease and I fought right along with him. He lost his battle in Oct. of 2005. But, going to MD Anderson gave him a chemo combo of gemzar and cisplatin. He took the chemo for 1 1/2 years. It slowed it down and kept this very aggressive cancer from spreading. The Oncologist here in Indiana was amazed with Donnie's fight to live and the treatment. They had only given him 5 months to live. I am sorry but what I have learned by spending the last 3 years beside my husband helping him with the fight is that sometimes Doctors all over second guess cancer treatments for cancer. I also believe that no two people's bodies are alike. I just know that my husband fought a hard battle and in a way he did win. His pain level wasn't too bad, we traveled, he got to see 3 of our kids married and our grandaughter borned. I thank God everyday that he gave Donnie and I those extra years together. When the chemo quit working, Donnie decided to try a clincal trial even if it was to benefit other pancreas cancer patients in the future. he had the panvac vaccine. He took it in Dayton, Ohio. H took it for 6 months. I know I am a talker but anyone out there with PC please don't give up the fight. There is always something new out there and it may work for you or give you extra time here. Ann_F_1 Fri, 28 Apr 2006 00:00:00 GMT Hi, I'm new to the board, and saw your message. My father went to the doctor the day after X-mas because he was jaundice for about two weeks. He had no pain. It took us almost 2 weeks after his first doctors visit to get his diagnosis. He has Stage 4, locally advanced, resectable pancreatic cancer. He is 67. He had the Whipple surgery on Feb. 1, 2006. At the time of surgery, we were told that is tumor was in-fact "unresectable", but they had already committed to the sugery, so they had to proceed and remove whatever part of the tumor they could. Part of the tumor is sitting on the portal-vein which made it unresectable. His cancer has spread to some of his lymph-nodes as well. His recovery from surgery was a little tough. But he left the hospital in exactly 15 days. He has since started radiation in conjuction with a low-dose of F5U continuous feed of chemotherapy. He is in his 5th and final week of treatment. His CA9-19 results are almost back to normal for now. My family and I are doing more research to see if we can find any other treatments that might be better than what he is receiving now. We are currently looking into the Cancer Treatment Centers of America. It looks promising. I wish you and your family the best. I know how devistating this is. It almost seems umbearable at times. Thinking of you and your family. Veronica in CA. Cancercure Sun, 23 Apr 2006 00:00:00 GMT Tiffany, I'm so sorry about your father. My father was just diagnosed this past Tuesday with what appears to be already stage IV cancer......spread to the liver in a spot that showed up. It's so devastating, but I keep hoping. How old is your Dad and what treatment will he have? I'm so new at this, I can't believe all the different emotions we are all going through. Sharon Sharon2 Sun, 02 Apr 2006 00:00:00 GMT Hi, I am new to this board. My father-in-law found out today that he has pc, we are all shocked and terrified right now! Everything has happened so quickly, the 28th of December he started turning yellow and lossing weight and now today we find out he has pc. I've been reading your posts and am feeling a little better, more informed. My husband is hysterical so I am trying to find some information to pass along. I will pray for all of you. I appreciate your openess and want you to know that your stories and information are helping me. God bless! Jacquiemomofthree Thu, 05 Jan 2006 00:00:00 GMT Hi, I hope all is going well for you. My husband is 56 and has just been told he has pc. We have talked to Cancer Treatment Centers of America but my husband is still wary of going. We have been to the Univ. of Mich. but the only option they offer is chemo and 6 months. What is your opinion of the cancer treatment centers of america? Thank you so much for your time. Sue Sue_Ellen Thu, 05 Jan 2006 00:00:00 GMT I am sorry for your loss. I lost my husband of 29 years on Sept. 30,2005. He had just turned 48. He was diagnosed exactly 6 months earlier. He was feeling fine until Good Friday when he had terrible pain in his stomach going to his back. When I took him to the ER I really thought he had a kidney stone or something. In the ER they did Xrays and a CAT scan and found 3 spots on his liver. He was admitted for treatment of pancratitis (sp) and more tests. On March 30,2005 we got the punch in the stomach. How brave he was. He believed till the end he could beat it. He was on chemo and tarcevo, 2 rounds but the cancer spread. He then went to experimental treatment. The cancer spread to his lungs. He was at home with us thanks to wonderful hospice. I guess I just want to say that I was so glad I could care for him and that my children and grandson were able to spend time with him at home. Mrsp Tue, 03 Jan 2006 00:00:00 GMT I will pray! God be with you and all you love.I have been fighting 3 years. Troy004 Tue, 27 Dec 2005 00:00:00 GMT I'm a 38 year old white male recently diagnosed and terrified as my cousin just died.my life long friend Tommys' mother also just died.I have told myself i dont have time to be so sick and in so much pain. staying busy takes my mind of the worry and i actually have normal moments.I'm convinced my attitude will make me pursever and kick this thing because i refuse to cry or give up. both people i knew gave up almost as if just the finding out that they were sick killed them.and last but not least if worse comes to worst I feel sorry for all that still live as I'm going to the better place.no tears just a busy schedule and i fight sleep with all my might. Troy004 Tue, 27 Dec 2005 00:00:00 GMT Linda - I was just looking over some posts and wondering what happened with your dad? My husband, Dale, left us August 1. We are struggling to get through the holidays, but we are together in spirit and know that Dale is happier now as our angel in heaven. How are you and your family doing? - Karen Karen_p_5 Sat, 10 Dec 2005 00:00:00 GMT Dear Peter, My husband has pancreatic cancer. I would like to find out more about Dr. Bru's work with G-CSF. Is this a subcutaneous shot? Thank you, Pamela Pamela_Joan Sat, 10 Dec 2005 00:00:00 GMT my friend has been battling a recurring rash that has been treated for almost 6 months. dr attributed to stress and allergies. after another blood test a few weeks ago they told her she was diabetic and began treatment for that and still treated the rash. the rash would clear up and then always come back worse and affecting more parts of the body. we finally convinced her to see another doctor who did more test and said she had very high counts leading them to beleive it was being caused by some kind of cancer. through all of this she has been very depressed along with horrible bouts of back ache, depression,constipation, and severe bowel pains. they sent her to a hematologist whom did biopsies of the rash which is now out of control and bleeding. they beleive it may be pancreatic cancer and have just started testing has anyone else been through this or had this rash as a warning sign? help!! a friend Tammyb Fri, 09 Dec 2005 00:00:00 GMT My uncle who is a healthy, non smoking, active 60 year old was diagnosed in june with inoperable pancreatic cancer. He was sent home with a pat on the back. I did research and found good things on Essiac tea and the Budwig diet. Even though he isn't into herbal medicine, he started on 4 oz. of essaic(ordered from "anursestea.com" or something similar, you can find it on the essiac site), and 4 oz. of flax seed oil in cottage cheese per day. He just went back for his four month check up and the tumor was almost gone! You should check it out. Good luck! Jeanniec Mon, 21 Nov 2005 00:00:00 GMT Hi, I am a 44 year old Caucasian male and I was diagnosed with pancreatic cancer (tumor in the head of the pancreas) in April 2004. I went through 5 months of chemo and then surgery, the Whipple procedure. The cancer did not spread outside of the pancreas. Next they did radiation. The cancer came back in May 2005 in the same area where the head of the pancreas had been removed. I did another 5 months of chemo; Gemzar, Taxotere and Xeloda. The CT scan shows the cancer has shrunk, but my C19-9 levels are still high. I am now on Tarceva, for about 2 weeks, and I also broke out all over my face. The Dr. gave me some oral antibiotics which helped along with an antibiotic cream. My face is starting to clear up, but I still have a lot of whiteheads. Do these systems continue or is this just a problem with taking Tarceva for the first few weeks? Thanks Barry Blg2789 Mon, 21 Nov 2005 00:00:00 GMT I am so sorry for your news. It is like getting hit in the stomach really hard over and over. My mom ,although older than yours, was also a very active healthy woman whose diagnosis hit us out of the blue. Here are some of my thoughts after looking back on the past 5 months (since her diagnosis): . you will get through...I believe God carries us when we ask and need him. . you will find angels along the way to help you...let them . an oncology nurse once told me that I should try not to listen to any news or stories of PC (or other cancers) that are more than 5 years old because the medical field advances so quickly. . your grandpa suffered from cancer as did mine but there are also so many ways now to make people comfortable if the cancer is advanced. (But even advanced cancer can be treated!). . having said that, I would also say , try and keep a "positive realism", celebrate the good news but stay even because there will be days of bad news along the way. . if she is able to have the Whipple procedure to have the tumor removed, find the best doctor you can. It is a major surgery and you want someone who has done many. (we had a great surgeon in Cinti) . there are no dumb questions..require that physicians give you a chance to ask and understand all options, risks, etc. Be patient active! . ask about this new drug Tarceva that is showing some promise. . try and deal one day at a time with the facts...I would lay in bed and think about my mom's funeral and how my babies won't know her and that will drive you crazy and is a waste of energy. By the way, my mom's tumor was operable, there was local lymph node involvement so now she is finishing up 5 months of chemo/radiation/chemo and hopefullt some remission after this. There were days that I look back on and do not know how we did it but we did and you will. Give what you cannot handle to God and tell him "heck with it. It is your burden to carry. I'm full today". I have found peace in that. Keep me posted along your journey Brigid Wed, 16 Nov 2005 00:00:00 GMT Brigid - thank you so much for your care and concern. Unfortunately, my husband, Dale, (57 years young) passed away August 1, 2005 less than 5 months from diagnosis. Yes, he was on Tarceva, Gemzar and even 5FU for a while. We tried every protocol available. It was just very advanced and agressive in his case. I continue to stay involved in PanCAN and other cancer networks to help others through their pain as cancer survivors. That is what I consider myself and my four children - cancer survivors. Our awareness of cancer, and especially pancreatic cancer, is an essential part of our lives now. - Karen Karen_p_5 Wed, 16 Nov 2005 00:00:00 GMT Marianne- We struggle with this a lot in my mom's treatments. I struggle with the balance between the treatment and the quality of life. Are we curing her or killing her? You always have the option to have a say in your own treatment plan. The risk of cutting down is that it could be less effective. Just make sure your dad is open with the doctor(s) about his side effects he is having. Cutting back may be the best option or maybe getting a second opinion is a value. I strongly believe that if your physician does not have "time" or interest in discussing all this with you and your dad then you can find a smart caring doctor out there who will. Ask your doctor about a drug named Tarceva...new in pancreatic cancer treatment. Mom is supposed to start next week. We are still researching the side effects and I have lots of questions for the doctor at the next visit. Good luck and take care. May you find angels to support and guide you along your journey. Brigid Wed, 16 Nov 2005 00:00:00 GMT I do not know if this is of any help but it may help your husband for a short time. There is a newer drug out called Tarceva that is being used for non small cell lung cancer and pancreatic cancer. If you search this site under tarceva you will find some discussions about it when used for patients with advanced lung cancer and from what I have read, it is for that case as well as advanced and inoperable pancreatic cancer. My mom is starting it next week. I pray for you and your family. Brigid Wed, 16 Nov 2005 00:00:00 GMT Thank you Sylvia, My Mom went in for surgery to put a stent into her bile duct, but it couldn't be done because she has a massive tumor in her stomache they didn't know about! She is having a lot of trouble eating and the stent was supposed to help increase her appetite. I will tell her about Dr. Chue. Seattle is not horibly far from where we are. Thank you for your help and concern, Gi Gi gi_gi Tue, 15 Nov 2005 00:00:00 GMT Dear Gi Gi, First of all, I'm so glad you're reaching out for support. I'm a cancer survivor, and wouldn't have made it without help from my parents, siblings and child! I know from experience that all the information out there can be confusing and/or conflicting. I also know that most oncologists are unlikely to try any treatments outside the clinically proven protocols. If you and your mother are given the "There's nothing we can do for you, get your affairs in order" speech, PLEASE PLEASE call and speak with Dr. Ben Chue, an oncologist at the Seattle Cancer Treatment & Wellness Center. By way of background, he has successfully treated many, many women with a specific type of recurrent breast cancer by using Herceptin -- SEVEN YEARS before its recent announcement as a clinically proven treatment. Recently Dr. Chue has been trying a new treatment for pancreatic cancer (using drugs common to oncological practice , but in different combinations and lower doses over a longer period of time) and has had amazing success. One patient who was highly jaundiced and brought in for his first treatments on a gurney is now walking under his own power. Another pancreatic cancer patient, a teacher, has actually returned to work! It sounds too good to be true, but I know from experience that Dr, Chue is willing to take calculated risks that other oncologists are not. It's often only when patients feel they have nothing left to lose that they come to see him. I have witnessed him giving hope to many, many people. He is highly intelligent, has immaculate credentials and also happens to be a very nice, humble man. His colleagues include naturopaths, acupuncturists and other therapists who do amazing things to help patients feel their best during treatment. If you'd like to know more, please call the Seattle Cancer Treatment & Wellness Center at 206-292-2277. Best of luck to you and your mother! Survivorsylvia Tue, 15 Nov 2005 00:00:00 GMT My mother just got the horrible news today that she has pancreatic cancer. She saw her father die of the same disease 30 years ago and she has always lived in fear of cancer. She is 62 and very young and active for her age. We don't know what type or stage the cancer is as we are waiting for her to see a specialist. I don't know if I am strong enough for what lies ahead. My daughter passed away 2 years ago this Sept 23rd. I haven't come to terms with her passing yet. The worst part that I remember when Grandpa had this cancer was seeing him waste away quickly before my eyes. I don't want my mom to go this way! I am afraid of what she might experience in the time she has left. She is confused about what to do. She doesn't want to suffer through chemo. Her symptoms are upper right abdominal and back pain, weight loss, and fatigue. She says she hasn't felt good for almost a year. I feel so helpless. Gi Gi gi_gi Tue, 04 Oct 2005 00:00:00 GMT I'm a 35 year old female. I was diagnosed with inoperable, stage IV pancreatic cancer (mets to liver) the beginning of August. I have been fortunate and haven't had any problems tolerating the chemo and have now been on the Tarceva for about 3 weeks. I did get the rash (through my hair, face, back and neck) but have heard many times that this is a sign that it's working, so I was happy to see the breakout. It is uncomfortable at times though. I have not had any other side effects so far. Jars_Mom Tue, 27 Sep 2005 00:00:00 GMT My father was diagnosed with p.c one year ago, he had surgery the tumor was in the tail of the pancreas after surg they did chemo every three weeks for 6 months . last treatment in feb. all counts we fine till july c19-9 went up we had scans ct,bone,all normal. then august 13th went to er for appendicitics they removed it then we find out the p.c was in the appendicitics. his counts are still going up , they started chemo three weeks ago we will try it again., they also started him Tarceva. he is so tired this time around just has no entergy ( the last time he did chemo he did o.k) .. the rash is driving him crazy it is right were the doctor said it would be head chest back .. just wondering how long does this rash take to go away and is you'll have the tiredness with this medicine Maggiem Thu, 22 Sep 2005 00:00:00 GMT Sheila - You are right to be concerned about your children. Sit them down, maybe even with your step-dad, and have an honest conversation with them. I think kids appreciate being kept informed. It will be better for all of you (especially later) if you can talk now. You will need it for the foundation of so many questions later. You will remain in my prayers. I'll contact you. Karen Karen_p_5 Tue, 20 Sep 2005 00:00:00 GMT Hello Karen, Thank you so much for your reply. I am so sorry for your loss. I have done a lot of research on this cancer, and it isnt a very nice one to get. Not that any of them are. I am 37 years old. Bill is my step dad. He is only 10 years older than myself. My mom is older than he is. I had a real problem with that when I was 20 when they married. But... the reality of it turned out to be an awesome addition to our family. He is great to my kids, he takes them to the ranch, to ride horses, shoot guns and ride 4 wheelers. We are in Wyoming. My son is 9 and my daughter is 13. My son is the one I really worry about. He considers Bill his best friend. I have told him that he is sick. But havent given him the reality of this illness. I dont want to break his heart, and to take the time he has left up worrying about him. I know he will see Bill go down hill. The chemo starts friday. My real dad died 6 years ago from heart disease, but he lived for years with it. This will be very different. It is like losing two dads. Makes one realize how precious life is. I will pray for you and your children. You are a wonderful person for taking time to help me when you have just suffered such a huge loss. I thank you so much for that. My personal email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- would love for you to write me there. I could use a new friend, if its not too much to ask. I am not one to just get on message boards. But it seems like a great place for much needed ears. Take care Sheila Sheilab37 Mon, 19 Sep 2005 00:00:00 GMT Dear Sheila: I am so sorry for your father's diagnosis. It sounds serious. I am sorry to report to you that my wonderful husband of 15 years, Dale, passed away August 1, 2005 after being on three different protocols of chemo. From diagnosis to death, it was just short of 5 months. Of course, we are at a loss without him, and yet I think all of us were prepared for the worse and lived every moment we had with him to the fullest! Dale was 57 when he died this summer, but he lived to see his son graduate from the 8th grade, get accepted to the high school of his choice, and spend quality time with his other three children, including a family trip to Hawaii in July. We thought the tumor was shrinking at one point, but it is very agressive, and we took Dale off chemo for four weeks so he could feel better (the chemo is sooo hard to handle) - and the cancer just came back so fast and so much that we knew we had precious little time. Dale was home on hospice (my choice, not his) for one week before he left us. He never gave in, but in the end, there just wasn't anything we could do. (Dale was also on a pic line since mid-April - it was the only way he could truly receive some nutrition.) My only regret - that I didn't have him record or videotape a special "something" for each of his kids. Sheila - you and your family are in my prayers. I'm not sure how old you are (your father is awfully young at 47 to have this disease), but maybe you could help your mom fight and stay strong, but also face reality and prepare the family for what likely will happen. Once the cancer has metastisized to other organs, it is very hard to gain control, but miracles can happen. Please e-mail me anytime. Have you checked out www.PanCan.org? There is lots of helpful information on the site. Karen --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Karen_p_5 Mon, 19 Sep 2005 00:00:00 GMT Hi Karen, I am new to this site. My father was diagnosed with acinar cell carcinoma of the pancrease three weeks ago. He is 47. It is in his lymph nodes, and his lungs. It is too far for surgery or radiation. He is getting a pic line today, and will start chemo this week. I am wondering how your how you and your family are doing, and if your husband continued with the chemo. I know that your message was in april, so you probably know my next question. Is he still alive? I know that sounds horrible, but I am trying to find out the facts about this cancer. My mother, attempts to not tell everything, trying to shelter us. I appreciate your response. And am so sorry for your family and husband. Thanks, Sheila Sheilab37 Mon, 19 Sep 2005 00:00:00 GMT Dear Tiffany, Sorry to hear about you Father. My prayers are with you and your family. My father has been diagnosed with preiampullary carcinoma of the pancreas. As a result he underwent a whipples resection and is now undergoing chemotherapy. He is on 5FU and Leucovorin. He is on a 6 month treatment of 5 days each month. What I would like to ask others out there - is that since my dad is finding the side effects quite hard to handle, and combined with the whipples resection he is in alot of discomfort, is it possible for the doctor to reduce the chemotherapy from the usual 6 months to treatment to 4 months? Has anyone ever done this before? Will appreciate anyones feed back on this. Thanks and Regards, Marianne. Mcaszo Mon, 29 Aug 2005 00:00:00 GMT Hello, I just saw your message and wondered if you have more information. I am 57 and have been dealing with pancreatic cancer since April 2004. I focus both on naturopathic and traditional chemo etc. I would like to hear more about your mom surviving for 6 years and this scientist you are talking about. Thank you. Diane Dianecr Tue, 16 Aug 2005 00:00:00 GMT Thank you for responding ayaman. I have gone to both sites since I do read Spanish. There is a lot of reading to do for a while and next wednesday when we go back for my husbands chemo session, will bring it up when he sees the doctor. Thank you, Letty Letyze Sat, 25 Jun 2005 00:00:00 GMT Thank you for responding. I have gone to both sites since I do read Spanish. There is a lot of reading to do for a while and next wednesday when we go back for my husbands chemo session, will bring it up when he sees the doctor. Thank you, Letty (letyze@aol.com) Letyze Sat, 25 Jun 2005 00:00:00 GMT Thank you for responding. I have gone to both sites since I do read Spanish. There is a lot of reading to do for a while and next wednesday when we go back for my husbands chemo session, will bring it up when he sees the doctor. Thank you, Letty Ayaman Sat, 25 Jun 2005 00:00:00 GMT Dear Letti and Joanna: First of all, let me tell you that you have all my support in such difficult times you are living, I know first hand how hard this is. Okey, this treatment has been tried with success in 2 terminal cancers, though they weren´t pancreas. Still, I went to the university in Madrid and talked to Prof. Bru, the scientist that has leaded this investigation, and he told me that he thinks that this works FOR ALL SOLID TUMORS. You have the case here: http://www.euroresidentes.com/Blogs/2005/05/spanish-scientists-use-maths-to-cure.htm there is a page that has been formed and where they are discussing all aspects of this man´s theory, you can find interviews done to him, you can also find all his studies done and published. The problem is that this one is in spanish. As for the treatment what this man has done is empower your defenses so they produce masive amounts of leucocytes and those suposedly destroy the tumors. Now, I have to tell you that oncologists here do not even want to read this man´s studies. I do not really understand that. Some of them , just a few agree with him, but I know 1 thing: So far he has cured 30 tumors inoculated in mouses and 2 terminal cancers. Not 1 failure. Here the only way to get that treatment is either ask for it for compasive use, that is, because there is not conventional treatment that will cure you, or do it illegally, buying them in a small country called andorra and which is next to Spain. But I strongly do not advise that, as a doctor would have to supervise it. Everything you need to do is on Mr. Bru´s study. You can find it on the second webpage (www.terapia-cancer.org/) and it is in english. The name of the article is "Regulation of neutrophilia by granulocyte colony-stimulating factor: a new cancer therapy that reversed a case of terminal hepatocellular carcinoma ", an it has been published on the Journal of Clinical Research on may 2005. Now, on the study there is exactly what you need to do and the medicine. Also, Prof. Bru has said that if any doctor calls him telling him that he is going to administer the treatment to a patient(that means it has been done legally, I do not know the laws on your country), he and his team wil asesorate him or her completely free. I have talked to the man personally and I believe in him. We have asked for the treatment and it will take 5 weeks more to get authorised. Meanwhile my mom is on gemzar with tarceva, which is a very goos treatment, but (I hate to be this harsh) this does not cure pancreas cancer, actually diseminated pancretic cancer has no cure with conventional treatments. That is why we are going to try this. My advice is go with the study to all the doctors you can find until you find one that will try this. Never stop fighting!!! Ayaman Sat, 25 Jun 2005 00:00:00 GMT My husband was diagnosed with PC last August 2004. He had all the symptoms but the doctor didn't know what it was. Stomach ache, backache,lost 35 pounds. After treating him twice for what they thought was h-pylori, they finally did a scan and found that he had a tumor about 2cm on the tail end of his pancreas. They removed 60%, plus his spleen and some lymph noodes cause it had spread to 7 of them. Then he did 7 wks of radiation and then 4 months of chemo on gemzar. This May, they discovered that it had spread to his liver and he is now doing chemo with gemzar and a new drug named tarceva. The first two weeks were very rough. He got a very bad rash on his face, neck and all around his chest and back. It is starting to go away now, this is his third week. The rash is suppose to be a good sign meaning that the medication is working. He is 52 and doing well right now. Would like to know the name of the scientist and the name of new drug or therapy. Please continue letting us all know more soon since it is a matter of urgency for all of us. Letty Letyze Sat, 25 Jun 2005 00:00:00 GMT What are they giving your Mother?? I live in the US and would be very interested in getting information on this Doctor as my 49 year old Son was diagnosed in November 2004 and is really suffering. Please let me her from you ASAP. Joana Fri, 24 Jun 2005 00:00:00 GMT Marian, There is NO rhyme or reason to cancer. It strikes the young, old, black and white. My father was a 56 Native American when he passed of Pancreatic Cancer - my friend Ray only 35. I am sorry that you and your family are having to deal with this. It is hard and PC is probably the worst cancer to endure...especially knowing the probable outcome. God give you strength. - T Traiandk Fri, 17 Jun 2005 00:00:00 GMT Hello I am from Spain and my mother has been having pancreatic cancer for the last 6 years, which is incredibly unusual. The doctors give her 6 months to live. We have tried all treatments on the market and nothing has worked. But we are a family of fighters. Last week there was a very big thing about cancer on the news: a spanish scientist (he is a mathematic!!!) named Antonio Bru, has developed a theory about the dynamics of tumor growth, and basing all his studies on a mathematical formula he has cured 2 terminal cancers in 8 weeks with a treatment that empowers your own defenses to fight the tumor. Since there is nothing the doctors can do for her, I have managed to contact him, and I have found an incredible person that wants to help people and everything for free as he thinks what he has discovered is too big to leave it only for the rich. I have managed to get the medicines for her and we are going to start the treatment next Friday. Even though Mr. Bru cannot guarantee anything, he strongly thinks pancreas cancer CAN BE CURED, I will keep you posted if we cure her and will tell everybody exactly what to do. Pray for me. This is not a fraud, I have met the man and he is a very good person. If we manage to cure her, I will dedicate my life to help people with cancer, as I know first hand how horrible this can be. I also have read thousand of pages on pancreatic cancer and know everything about the latest chemotherapies available. If you need advice you can post a message and I will check it. Never stop fighting!!!!!!!!!! Ayaman Thu, 09 Jun 2005 00:00:00 GMT My dad was diagnosed with stage 4 cancer last sept after several months of misdiagnosis. It had already spread to the liver and was inoperable. After the third doctor told my dad that he had 6 months at the most my aunt told us about cancer treatment centers of america, which is where he decided to receive his treatment. We have also decided to surround my dad with encouragement and positive attitudes. My two children have been a great source of strength for him. On my son's 3rd birthday last month my dad wrote the most beautiful letter to him...telling him how he is fighting hard to be around for many more birthdays and accomplishments in my son's life. My dad was only 53 when he was diagnosed and he has so much more to see and do. Cancer Treatment Centers have a different approach with fighting cancer. He travels there once a month for his chemo and it is given in smaller doses over a 5 day period. He has a whole team of medical professionals that work with him such as the ocncologist, nutritionist, homeopathic nurse, pastor, etc etc. What started out as a nightmare for our family is starting to look like a happy ending. My dad's cancer has shrunk greatly. It is gone from the liver and very small in the pancreas. When he travels to the hospital this month they will do a PET scan to decide what should be done next (possibly surgery). Don't give up! Keep researching every option that is available to you and don't ever think the doctor knows best! This is your fight, not his!!! Natalie Daddys_Girl_2 Mon, 23 May 2005 00:00:00 GMT My Mom was in Florida this winter and I visited her in the middle of February....she complained of feeling tired and I noticed she wasn't eating as much as usual. She came back to Jersey on March 17th and I decided to take her to the hospital on March 20th because she was pretty tired and out of it. She complained of some travelling pains through her body and pains beneath her breasts. They found through her blood her liver enzymes triple what they should be and after a CT Scan found a large tumor on her liver coming from stage 5 pancreatic cancer. She passed away on May 11, 2005. I was with her non-stop from the minute of being told of the spread to her liver until the minute she passed. She was 76, white, never smoked, and otherwise basically healthy and full of life. I never knew that because a 76 year old women feels tired that it would mean she'd be dead in 2 months. I am destroyed by this and in need of help. She was my best friend. I can't believe something like this could happen but I know by talking to people that it's not that unusally with this type of Cancer. I have prayed but sometimes I feel so lost. It is a horrible illiness. Annettedb Wed, 18 May 2005 00:00:00 GMT I certainly can understand where you are coming from; my mom was diagnosed in Oct. 2004 with pancreatic cancer. She had been having back pain since June 2004. The dr. thought it maybe a kidney stone, sent to urologist who confirmed this. 1 month later still back pain had blood tests, which showed elevated liver function tests, and abnormal lipase. I am a nurse and mom is not on any meds that would cause this so I insisted on more tests. She was then referred to a gi dr. who was thinking gallbladder, went in and discovered pancreatic cancer inoperable twisted around main artery. I can't even begin to tell you the blow we all felt when given this diagnosis, we thought gallbladder go in remove it put an end to her discomfort. Mom is doing well, wonderful outlook, family that loves her, wonderful friends who continue to pray for her. Thankful everyday that she is still with us. She is doing chemo/radiation. So far 3 ct scans that show tumor shrinking and not spreading. This whole experience has taught me to investigate further and don't always take the info the dr. is saying and do nothing especially is symptoms cont. Mom_of_2 Mon, 16 May 2005 00:00:00 GMT Dear Color Purple - I think you are doing everything right! Follow Dr.'s lead and add a healthy macrobiotic diet. The mental medicine of going off to Disneyworld with the grown-up kids and all of the positive energy you are infusing will only make these days and everyday you have together better. Good job for jumping in and taking this thing on with a positive fight. I, too, am doing everything I can (and enlisting the help of family and friends) to keep things positive around my husband. He is at Disneyland today with three of his four kids (one all grown up, the others are under 14). We are happy everyday he gets up and feels good - and we share it with each other. If anything, it has helped to change my husband's outlook since his March 7, 2005 diagnosis. I just wanted to send you a virtual hug. All the best, Karen. Karen_p_5 Mon, 09 May 2005 00:00:00 GMT My husband was diagnosed with pancreatic cancer on our 26th anniversary on March 17, 2005. It is in the head of his pancreas and has advanced to his liver. We were just devastated. He too was incorrectly diagnosed and treatment delayed as a result. He is at home now, just completed his first round of 3-weeks of chemo. I have decided to get amd and fight this thing. I have started him on a liver cleansing diet from a cookbook that I had put away. It sounds a lot like the macrobiotic diet. I am hoping against the odds that this along with the chemo and other alternative therapies such as laughter, prayer, positive imagery, and meditation, it could reverse this thing to the point that it would be operable. Just in case though, or in spite of this, I am taking him and our children, who are grown now, to Disneyworld next month. I am doing everything in my power to create a positive atmosphere where we can try and fight it. My husband is 64 and too young to have this happen. He is caucasian, and not a diabetic. We have no clue where it could have come from. His is also stage 4. Color_Purple Thu, 05 May 2005 00:00:00 GMT Hello, I am new to this site also. I hate what has happened to your mother, as I know how you feel. My dad had complained of pain as well and he started out with turning yellow-jaundis- sorry if I spelled it wrong. And then they did surgery to put a stint in to open the bile duct. A lab tech noticed the tumor markers were high, but the doctors did nothing about it. If they would have done surgery to remove the tumor at that time, they would have gotten it out. But of course, being pancreatic cancer, it spreads so fast. Now they say that it is inoperable. He has had radiation, and now is going through chemo. What angers me is that they waited to do anything because it was a holiday weekend!! How absurd is that? If someone goes to the emergency room on a holiday there is still some one there. I pray to God that he intervene now, because "man" has done what they can do, now let God do what only he can do. God bless you my friend and I hope that your mother is doing well. Linda Blondie Sun, 01 May 2005 00:00:00 GMT Dear Karen, I'm so glad that he is at peace and is ready. Some people aren't, and my dad isn't ready to go quite yet. He wants to live, and we have been ministering to him the word of God and what it says about not going if you aren't satisfied with your life. But my sister told me the other day that my dad has been saying things like-"I won't be around to bug you much longer" to my mom. I think he is saying it to get a little attention from her. He has lost 12 pounds in 2 weeks. He only eats soup, but doesn't want the meat thats in it. I wish that I lived closer than I do. I am thinking of taking a leave of absence from work to go and be with my mom and dad. I have surgery on the 9th of May. After I'm better, I will go visit. My mom has said that she is lonely, especially at night when my dad is asleep. My younger sister is suppose to go and spend the night with her. She will like that alot. Thank you for your prayers and God bless you and your family. May Gods peace be with you and his comfort as well and his provision. Linda Blondie Sun, 01 May 2005 00:00:00 GMT Linda - Thank you for your response. Your family is definitely in my prayers now. We are doing everything we can for our wonderful husband, father, son, brother, uncle - Last night we had a family "sit-in" where my lover and husband told us that he was ready to go. It was hard for our children, but we spent time hugging and sharing stories of our good times together. Today he is peaceful and lethargic. He is refusing all meds and liquids (he hasn't eaten solid food in a week). We will help him the best we can. We are praying every minute. This is unchartered territory for us. Stay strong, Linda. Karen_p_5 Fri, 29 Apr 2005 00:00:00 GMT Dear Karen, My father was diagnosed with inoperable pancreatic cancer as well in Oct. 2004. The lab tech saw that his tumor markers were high, and the doctors did nothing to check it out. My poor mother is doing all that she can do to stay strong. My sisters and my brother and I are trying to get all the information that we can about this type of cancer and making a list of questions based on what we find to ask the doctors. I am convinced that they have not done all that they could have for him in the beginning.But my dad is trying to hang on to his faith. We keep him in prayer constantly. Now that "man" has done all that they can do, its Gods turn. We are not giving up. Keep the Faith my friend. You and your husband are in our prayers as well. God bless you both. Keep confessing the healing scriptures every day and believe it in your heart as well. Let me know how things are going. Blondie--Linda Blondie Fri, 29 Apr 2005 00:00:00 GMT I am new to this board - my husband was diagnosed with stage IV non-operable pancreatic cancer in March, 2005. He is 57. He presented with what was initially diagnosed as diabetes in November, 2004, and treated incorrectly for this disease. His abdominal pain continued and increased until it was unbearable. Finally, after admission to the hospital, and a CT scan, it was clear: a 12cm tumor in his pancreas, with masses in his lymph nodes, outer stomach lining and liver. A needle biopsy on his liver was performed to confirm the diagnosis. He started chemo a week later, which he's had for the last six weeks. Its been terrible. He's scheduled for another 6 weeks of chemo starting May 9, but we're considering bypassing it. At this point, he can't take anything orally because it comes back up 30 minutes later. He has a pic line and gets two liters of liquid diet every night through the pic line. I also admister morphine as needed through his pic line - and he is up to 4 morphine patches. We are trying to keep him comfortable and out of pain. Its been a struggle dealing with this, especially with our children at home: 10, 11 and 13 years old. Our 23 year old moved home to be with us. My question - is it a good idea to keep him at home as he progresses to hospice? Will it be too hard for our kids? Any comments are appreciated. Karen_p_5 Thu, 28 Apr 2005 00:00:00 GMT Hello, I am new to this site, but I was searching and found exactly the support I needed. My mother (57) was diagnosed with pancreatic ca in January 2005. February, she had a 2.5cm tumor in the body of the pancreas. Complained of abd/back pain for over a year,but was treated with pain meds. The pain became unbearable and finally, a cat scan was done. The result illustrated that a tumor had invaded the splenic vein as well. Surgery performed was distalpancreatectomy resection with removal of the spleen. I find it ironic that no one followed the complaints until a family member persued with more testing. She is 2 weeks into rad tx and chemo, lost with weight loss of about 30 lbs. Apparently, the treatment is for the surgerical bed(borders) and 1 lymphatic node. She has a strong family hx of adult diabetes, but was not diagnosed as a diabetic until the found the tumor on cat scan. Anyone with common sense would known that the pancreas controls the insulin,therefore if there is a tumor in the pancreas that restricts that function, the end result will make you a diabetic. My question: If the patient is predisposed to certain genetic disease (diabetes in this case) would you not do lab values on a routine basis to check the function? How long will it take for a patient to suffer before something is done? Where is the preventive medical approach in this case? My prayers are with all of us. Imager Sat, 09 Apr 2005 00:00:00 GMT My heart breaks for you. My father also was diagonosed 3/6/05 with Pancreatic cancer. He is on his way to sloan kettering at this very moment for a second opinion. I am so sick and worried. Please tell me how your father is doing. I am praying for a miracle and I believe! Today is Good Friday I will pray for your father also today. God Bless You and your family. Please write back. Jenich Fri, 25 Mar 2005 00:00:00 GMT Dear jennifer I believe my brother is at end stage pancreatic cancer. As you have already experienced, there are no words to express this experience. I am wondering if you would mind sharing what you went thru as I plan to hospice my brother at home (I am a r.n.). You are correct, many md's do not understand this disease process, mainly bc it presents so late in the disease process that it is too late to treat. Thanks Alexendria Wed, 09 Mar 2005 00:00:00 GMT Hello, me again. I just checked the date of your post. I was thinking it was more recent. Anyway, sorry for the error, but the contents are still valid. Etiff Sat, 12 Feb 2005 00:00:00 GMT Hello, I'm new to this board, and my father was just diagnosed with pancreatic cancer this week (inoperable). So I know what you're going through and just wanted to say I'm so sorry someone else is going through this too. Sending warm thoughts to you and your family. Tiffany Etiff Sat, 12 Feb 2005 00:00:00 GMT I hade burning pains in my stomach In Aug 2004 and had a cat scan of my upper abdomen on 1 Sept 2004. My GP prescribed antibiotics for an ulcer but the pains got worse .I then saw a gastroligist who put me thru a colonoscopy and a gastroscophy even though I had told him I had turned yellow ie jaundiced .He still made me go ahead with the two procedures .Nothing showed up on the scan apparently and I admitted myself to a public hospital where I was treated for jaundice .They carried out an ERCP (3times)and a scan they did revealed cancer in the head of the pancreas .By this time it was early Nov 2004 and it had become inoperable .Yes PC is difficult to detect but our medical professionals should work harder on detecting what is really wrong with their patients . Harvey Mon, 07 Feb 2005 00:00:00 GMT My father was just diagnosed with extremely advanced stage IV pancreatic cancer. He fits most of the typical aspects of the cancer considering he is 54, african american, and has diabetes. I read your post and I wanted to tell you that I found it odd he had the cancer as well, but I am very happy that it has not spread. Before they even found my father's, it had spread to his liver. This site offers much hope for him, and I hope all turns out to be well. I did a lot of research on the internet and I learned that many people with pancreatic cancer are diagnosed with chronic pancreatitis instead and given the wrong type of treatment. My father was unfortunate to encounter this. This post is getting rather long, but the point is that a lot of doctors played with my fathers life. They put him through so much pain when treating him for the wrong disease. If you do some research you will find that it is hard to tell a difference between chronic pancreatitis. Many doctors do not have much experience with this type of cancer, and since this is a more serious type of cancer, I just wanted to make sure he has a doctor who is actually going to help and not write it off as a lost cause. I will pray for him and my father, and I am sorry that this happened. Jenni404 Mon, 28 Jun 2004 00:00:00 GMT I am a 38 year old male. I have been diagnosed with pancreatic cancer. I am currently undergoing chemo treatment. This will be followed by chemo and radiation, which will then be followed by surgery. This protocal may be a little different than what you may have heard. I am being treated in Houston, TX. My tumor is in the head of the pancreas. Size is about 23mm in diameter. No spreading has been detected. Rbh11890 Fri, 04 Jun 2004 00:00:00 GMT My son's best friend is 31. He has just been diagnosed with pancreatic cancer. I think it has spread to the lymph nodes. From my reading, the median for this kind of cancer is an african-american, over 60, with diabetes! Is there anyone else out there with a similar story? If so, please respond with your treatments, support and any info you have thank you very much. Marian Marian_B Tue, 06 Jan 2004 00:00:00 GMT