Our pancreatic cancer forum and online resources at CancerCompass.com provide a supportive environment where you can ask questions, research information and get valuable feedback. http://www.cancercompass.com/message-board/cancers/pancreatic-cancer/1,0,119,27.htm Sun, 08 Nov 2009 00:00:00 GMT Sun, 08 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello to all - I am a 40 year old woman with stage 4 pancreatic cancer - mets to the liver ( over 14 lesions - non resectable) diagnosed in October of 2007. I was originally diagnosed with adenocarcinoma of unknown primary origin but after molecular profiling have been told that it is most likely pancreatic cancer with a slight chance of colon cancer. I have been on carboplatin, taxol, tarceva, and avastin - alimta and avastin - oxiliaplatin, xeloda, and avastin, and now CPT 11, 5FU, and avastin. I have been doing chemo every 3 weeks for 2 years with one break. During that break my liver lesions went crazy and grew much larger and new lesions were seen. I have had numerous trips to the ER, been hospitalized a few times, had 3 blood transfusions along with almost every side effect out there - not to mention I have been bald for 2 years now. SO... I am just wondering if anyone else out there has been doing chemo for a long period of time with no end in sight and what keeps you going? I am trying so hard to stay positive mentally but my body is not helping with this. I am so fatigued all the time, nauseated constantly, and have issues with severe pain - all of which I take medicines for yet still have issues. I feel as though I am in a dark tunnel with no light at the end. I have 2 kids and a husband that I am fighting this fight for but lately I feel as though I am not much use to them - having more bad days than good and no energy to do much of anything. Yet I have to walk around with a smile on my face saying "I'm fine" all the time because no one wants to hear anything else - or should I say no one can tolerate the thought of anything else. What I really want to do is cry. The only thing that keeps me going is that the thought of leaving my kids and husband alone is more than I can bear. But how do you keep on going through chemo after chemo after chemo knowing that chances are you will be doing it forever - however long that is? My scans are not good enough for my oncologist to consider letting me stop right now and I know if I do stop the cancer could take over and I may not be able to get it back under control. I think I am struggling with the quality of life vs. quantity of life idea right now. Oh well - sorry about the rant - I really do know that I am blessed to still even be here at all when my prognosis at the start said I would not be - I am just really tired of feeling so bad and feeling as though I am becoming a burden. Tomorrow is a new day and I will continue to put one foot in front of the other and be thankful for what I do have. I just think it would help to not feel so alone, to know that someone else might understand. Thanks for giving me a place to vent! Lori  http://www.cancercompass.com/message-board/message/all,41359,0.htm Lomo1 Sun, 08 Nov 2009 00:00:00 GMT My partner has been previously diagnosed with an adenosquamous pancreatic tumor in the body and tail of her pancreas.  Two sessions involving eighteen separate applications of chemotherapy (GemCis) have resulted in a 90% reduction in markers and a 50% reduction in the size of this primary tumor. However, in the build-up to what was planned as a new spell of radio and chemo, a PET scan was done (belatedly?) which showed that, contrary to this tumor being regarded as 'locally advanced' it appeared to have been metastatic all along, with further hot spots showing up in the lymph system. The 'good' news would seem to be that these new hot spots appear to have suffered the same fate as the primary inasmuch that they don't appear to be growing or spreading as a result of her treatment so far. So, we're back to chemo again - this time, it appears, a 'systemic' version which has yet to be decided upon. I just wonder if anyone has trodden a similar path or has any thoughts on where we're at now please? http://www.cancercompass.com/message-board/message/all,41315,0.htm emcee46 Fri, 06 Nov 2009 00:00:00 GMT November has been designated as Pancreatic Cancer Awareness Month.  We need to get the correct information out to the public regarding Symptoms, Risk factors, Diagnosis and Treatment options.  We also want to hear about those who have been diagnosed, family members stories and most especially, those who are winning the battle.  Please go to PanCan.Org and help us spread the word. http://www.cancercompass.com/message-board/message/all,41247,0.htm nec15 Tue, 03 Nov 2009 00:00:00 GMT About 2 months ago, my mom started acting strangely.  My dad had passed away about 3 years ago and she pretty much stayed home and we did what we could for her.  I know she was so lonely, we all had jobs except for a brother that was on disablity and he took her to her doc appointments, my sister gave her her medicene and took her dinner everynight, she lived next door and I would come over once a week sometimes every 2 weeks and do her hair since I am a cosmetologist.  About 2 months ago, her little companion , a small dog got killed on the highway.  She started going down then.  She had lived with RA for about 35 years, so her hands were all crooked.  She had dementia and it seemed to be getting worse, She knew who her children were.  All of a sudden a month before she passed, she started locking her doors and would not let us in.  She refuse to take her meds and would not see a doctor.  She would not eat.  My brother and sister were her main caregivers and they tried send a rescure squad to get her and she refuse to go.Finall y, my sister drove her to the hospital, but she would not get out of the car, my brother had to get a court order to get her to go into the hospital.  she had a eye that was about to pop our of her socket and it looked infected.  Well it was infected, they found that there was something wrong with her liver, so they kept her.  Next day, they did a cat scan of her liver.  We were called in the next day and told that she had a tumor in her liver, one in her pancreas, she was 78 years old and was to weak to take cancer treatment, they gave her less than 6 months.  I started crying on the spot, I myself had a huge cyst on my right ovary and was suppose to go in to have surgery.  Everyone told me to go ahead and then during my recovery time away from work, I could spend time with her.  I had Surgery on Monday Sept 28, she died Oct 2, that fast.  I was devastated.  I did not get to spend my time with her.  I did get to the nursing home and sit with her while she was passing away and tell her I loved her.  We all had no idea she had cancer.  What a blow that was and I hurt so much and cannot stop crying.  She had a beautiful funeral, the room was packed full.  My mother was a sweet lady and a good friend, towartd the end we did not know what was going on with her.  I quess she kind of knew it was close to her time, she was whispering to people that was not there.  I will miss her so much. http://www.cancercompass.com/message-board/message/all,41244,0.htm sdavisbook Tue, 03 Nov 2009 00:00:00 GMT Hi all, I am caring for my 59 year old father who is terminally ill with Pancreatic Cancer.  He is in his 20th month of fighting this awful disease and it hurts me so much to see him wasting away in front of my eyes and I am scared.   Really scared.  He was a healthy 14 stone tubby man before he was diagnosed, now he is down to 8 stone and is a complete bag of bones except for his huge distended stomach due to fluid build up (ascities). The tumor was found in the head of the pancreas which was blocking the bile duct so they put a stent in to relieve the jaundice.  The tumor has since spread to his bowel.  Dad was pretty well up to mid August of this year when he couldn't keep any food down, after several tests it was apparent the tumor had spread and grown around the top of the intestine preventing any food from passing through the stomach. The hospital performed a gastric bypass to relieve symptoms so dad could eat again.  It was after this surgery he developed the ascites and began to lost weight drastically. For the past couple of weeks dad is now spending more and more time in bed as he hardly has any energy at all.  He is down to eating one or two small meals a day (if at all) and drinks probably two glasses of fluid a day.  He complains that his taste has gone and he has no energy.  Some days are better than others and he does feel better after he has had the fluid drained, however the fluid always returns within a couple of days and gets so bad dad is having to have it drained every week. From writing all of this I guess I pretty much know the answer to this question but just want to know what time I have left with my father.  I know every patient is different and every cancer is different but i want to know what I may experience in my fathers last week/days/hours.  I lost my mum to breast cancer last year so I have seen what happens in the last few hours but I want to prepare myself so I know the signs to look out for and be as strong as I can be for my dad to make him as comfortable as possible. Any advice or experiences you can share would be really appreciated.  I would like the truth so please be honest with me. Much Love, Lisafo x http://www.cancercompass.com/message-board/message/all,41203,0.htm lisafo Sun, 01 Nov 2009 00:00:00 GMT My mother had pancreatic cancer two and a half years ago. Had radiation treatment. Had chemotherapy treatments. Was fine for about one year and then started having pain. Had chemotherapy again. She finally could not handle the chemo treatments anymore. She has been on an alternative treatment for one month. Her pain is gone and she is doing much better.  She is also taking treatment to repair the damage done to her endocrine system.  See link  http://www.cancertutor.com/Other/Pancreatic_Cancer.html   http://www.cancercompass.com/message-board/message/all,41113,0.htm dlucas Thu, 29 Oct 2009 00:00:00 GMT Hi all...I had started another thread entitled "Good News" about two months ago because my husband, who had been previously diagnosed with Stage IV inoperable pancreas cancer, had after a year of treatment been deemed resectable after all.  On Sept 10th he underwent the Whipple procedure to remove a tumor on the head of his pancreas plus his gall bladder and parts of his stomach and intestines.  His bile duct was reconnected to his stomach.  We had been told he would be in the hospital for a week to 10 days.  Well, he ended up being in the  hospital for 40 days during which time he had to have his feeding tube removed in order for a larger one to be inserted after which he developed an infection.  So about 2 weeks was added to his stay because of these setbacks.  He was finally discharged but still with his feeding tube and stomach drain tube.  I'm not so sure we did the right thing with this Whipple after all.  My husband still can't eat so I don't prepare meals the way I used to.  he can't work either.  I see him going downhill physically and mentally everyday.  he is constantly nauseated and experiences a bout of dry heaves at least once a day.  He is depressed, also.  This may sound crazy but he actually had a better quality of life before the surgery. Except for a few days of sickness after his chemo he at least was still able to work and eat and (this may be TMI) but he still felt like loving me.  He told me today that he could feel himself going down and that he feels depressed.  anyone else have any advice or encouragement for us? http://www.cancercompass.com/message-board/message/all,41104,0.htm possumvalley Wed, 28 Oct 2009 00:00:00 GMT My doctors have told me I need chemotherapy treatments. It's with a drug called gemcitabine.  I was told it's a low grade dose so I  'should' have mild side effects from it.  However, my biggest concern is having a port put in versus putting an IV in my veins every time.  I will have a six month duration, on three, off one week.  Does anyone have any suggestions concerning as to which is the best way to get this chemo?  Not looking forward to being pricked every time and I've heard it wasn't the greatest for my veins, however, having a port put in doesn't excite me either.  Thanks for any help you can give me. Tom  http://www.cancercompass.com/message-board/message/all,41040,0.htm Dr_Tom Mon, 26 Oct 2009 00:00:00 GMT My F-18 FDG PET-CT scan suggests mildly FDG avid primary malignancy in the pancreatic body, with FDG avid peri-pancreatic /peri-SMA nodal metastasis involving left adrenal. One mildly FDG avid liver metastasis is also noted. There are also FDG avid subcarinal and left hilar nodal metastases.   I have consulted Oncology department head at Singapore and she has suggested me Temozolamide 100 mg (one capsule daily) and Xeloda (1500mg in the morning and 2000 mg in the evening). I am worried about the side effects of the treatment. http://www.cancercompass.com/message-board/message/all,41015,0.htm Nawaz Mon, 26 Oct 2009 00:00:00 GMT MEDLINE is a biomedical database free to use thanks to the National Institutes of Health and the U.S. Library of Medicine and contains approximately 19 million citations.  Over one half million of these studies are associated with complementary/alternative medicine and there are a number of very promising studies like these which show that food supplements and certain spices have profound chemopreventive and chemotherapeutic activity against pancreatic cancer cells, in vitro, in vivo and in some (though limited) human studies. Here is an example of a study published in In Vivo in 2009 which shows that there is promise in using aloe as an adjuvant therapy: Aloe significantly improves chemotherapy treatment coutcomes in patients with metastatic gastric, pancreatic and colorectal cancers.   Abstract Title: A randomized study of chemotherapy versus biochemotherapy with chemotherapy plus Aloe arborescens in patients with metastatic cancer. Abstract Source:   1: In Vivo. 2009 Jan-Feb;23(1):171-5. PMID: 19368145 Abstract:   BACKGROUND: The recent advances in the analysis of tumor immunobiology suggest the possibility of biologically manipulating the efficacy and toxicity of cancer chemotherapy by endogenous or exogenous immunomodulating substances. Aloe is one of the of the most important plants exhibiting anticancer activity and its antineoplastic property is due to at least three different mechanisms, based on antiproliferative, immunostimulatory and antioxidant effects. The antiproliferative action is determined by anthracenic and antraquinonic molecules, while the immunostimulating activity is mainly due to acemannan. PATIENTS AND METHODS: A study was planned to include 240 patients with metastatic solid tumor who were randomized to receive chemotherapy with or without Aloe. According to tumor histotype and clinical status, lung cancer patients were treated with cisplatin and etoposide or weekly vinorelbine, colorectal cancer patients received oxaliplatin plus 5-fluorouracil (5-FU), gastric cancer patients were treated with weekly 5-FU and pancreatic cancer patients received weekly gemcitabine. Aloe was given orally at 10 ml thrice/daily. RESULTS: The percentage of both objective tumor regressions and disease control was significantly higher in patients concomitantly treated with Aloe than with chemotherapy alone, as well as the percent of 3-year survival patients. CONCLUSION: This study seems to suggest that Aloe may be successfully associated with chemotherapy to increase its efficacy in terms of both tumor regression rate and survival time. There are over 80 MEDLINE referenced studies on the non-profit natural biomedical database known as GreenMedInfo.com  " target="_blank" rel="nofollow">http://GreenMedInfo.com   Here is the link: GreenMedInfo.com /category/diseases/pancreatic-cancer" target="_blank" rel="nofollow">http://www.GreenMedInfo.com /category/diseases/pancreatic-can The website isn't sellng anything and here is its mission statement: GreenMedInfo.com exists in order to provide free and convenient access to the biomedical research available today on the therapeutic value of natural substances in disease prevention and treatment.*  This  website provides physicians, health care practitioners, clinicians, researchers and laypersons with an evidence-based resource through which the potential or actual therapeutic value of vitamins, minerals, herbs and foods can be determined.   http://www.cancercompass.com/message-board/message/all,40979,0.htm sayerji Sat, 24 Oct 2009 00:00:00 GMT Has anyone heard of Dr. Rohan Jayarajah or Dr. John Preskitt in the Dallas area? http://www.cancercompass.com/message-board/message/all,40933,0.htm niecee Fri, 23 Oct 2009 00:00:00 GMT I just wondered if anyone had any thoughts on where my partner is at now please? She has been undergoing treatment here in the UK for an adenosquamous carcinoma in the body and tail of her pancreas. This involved two separate nine-session treatments of gemcitabine and cisplatin. This has led to a 50% reduction in the size of the tumor (originally some four inches in size) plus a 90% reduction in tumor markers. The next part of the plan would seem to be radiotherapy - which the medics here seemed very pleased she could even be considered for(?). However, there now seem to be so many other less-invasive treatments on the horizon now that I am wondering whether we should be looking to get one of those lined up for her. The latest I've spotted is a drug, currently called EP-100, 'designed to treat common breast, prostate, endometrial, pancreatic, ovarian, skin and testicular cancers'. It is apparently being tested by TGen Clinical Research Services at Scottsdale (Ariz.) Healthcare's Piper Cancer Center. Here in the UK there are others, such as the photodynamic therapies, which seem to offer such hope - although not widely available yet. As before, everyone's thoughts from the other side of the Atlantic much appreciated here. Keep going everyone - there's ALWAYS hope. http://www.cancercompass.com/message-board/message/all,40882,0.htm emcee46 Wed, 21 Oct 2009 00:00:00 GMT Hello, I must share this miracle, Dad was Dx in 2007 satge 4 PC mets to liver & lungs..(given 3-4 months to live ) He did not try chemo , due to the grim prognosis,why be sick whenyou only have a few months, he wanted quality if life.We tried( IV-C 3x/week)  & it is Oct 2009 & he is doing great, The cancer is going away, he only has 1 small tumor left on the pancreas. anyone can google intervenous vitamin C  they give infusions of an IV drip with vitamin C 2-3x week ,can be used in most types of cancer no side effects      http://www.cancercompass.com/message-board/message/all,40902,0.htm tootieday Wed, 21 Oct 2009 00:00:00 GMT My dad has his first C19-9 and it came back as 41.9. I know the normal range is up to 37, but what does 41.9 mean in comparison within the abnormal range? How high can the level go? This test was done after 1 cycle of chemo (3 weeks on 1 week off). He will start radiation and F5U for the next 5 weeks. A "lesion of concern" was found on his liver which they will also target with radiation. Any info would be helpful- it's so hard to figure some of this language out being a "newbie" to all of this. Thanks. http://www.cancercompass.com/message-board/message/all,40843,0.htm Periwinkle1 Tue, 20 Oct 2009 00:00:00 GMT My dad has his first C19-9 and it came back as 41.9. I know the normal range is up to 37, but what does 41.9 mean in comparison within the abnormal range? How high can the level go? This test was done after 1 cycle of chemo (3 weeks on 1 week off). He will start radiation and F5U for the next 5 weeks. A "lesion of concern" was found on his liver which they will also target with radiation. Any info would be helpful- it's so hard to figure some of this language out being a "newbie" to all of this. Thanks. http://www.cancercompass.com/message-board/message/all,40844,0.htm Periwinkle1 Tue, 20 Oct 2009 00:00:00 GMT Hallo to everyone I hope you are all doing fine...... My mom had her whipple procedure on 10th of August she had pancreatic cancer and she is stage 2a. She startet chemo (gemzar) on 10th of September. A couple of weeks ago, they found about a litter of  water in her lungs, they took it out and analized it , it was nothing, they said it is a normal process after the whipple. Yesterday she took another litter of water and send it to be analized.Iam worried that it is maybe something serious.Can you please tell me if somebody had the same problems????I am so terrified that is something serious, and she is doing so well after the whipple. Thank you and god bless all of you http://www.cancercompass.com/message-board/message/all,40845,0.htm Elizabeta53 Tue, 20 Oct 2009 00:00:00 GMT Just needing to talk. My dad was diagnosed in 2007 and underwent the Whipple procedure then. Since then there have been  numerous radiation and chemo treatments and was off an on with lots of good days until about three months ago. More surgeries, drains and tumors and now it is very near the end. He is home with hospice and just yesterday his drains plugged. No food for over a week and no fluids today yet. Very week and sleeping all the time with very little time awake and just for a few minutes at a time. Started oral morphine last night and his drain incisions are leaking. Retired policeman, active hunter fisherman, golfer,  former boxer and sportsman. Always a man's man. Loved Westerns  and Football and his family. . Always brave, honest, decent courteous and funny. Impossibly difficult to see him reduced to this. I have also heard alot of comments about how some think chemo is a weak way to deal with it. I think after seeing his wife and my sister undergo cancer and chemo and still die from it,  he is extremely brave. It was worth it for him because he really lived life on his good days. We have said our goodbyes and all that needs to be said between father and son. So hard to let go though. We really had some good times. http://www.cancercompass.com/message-board/message/all,40869,0.htm hurdygurdyman Tue, 20 Oct 2009 00:00:00 GMT Hi, my name is Tonia and I live in NC, Four years ago a spot was found on an mri whick turned out to be a cyst, now today my pancreas has cyst from the tail to the head, some in clusters, They call this IPMN, I'm being scanned every 6 mos. I went to Johns Hopkins twice and saw Dr. Canto, she did Eus and MRI both times, the last time the cyst in the tail of my pancreas has grown from 7mm to 1.5 cm,  Now I decided to go to Duke since it only 2 hrs from my house.  The surgeon I saw was Dr. Pappas, I really do not know anything about him, but he suggested that we continue to do scans,  I'm really worried,because with cyst all the way through my pancreas it seems that they will have to remove the whole thing.  My dad had pc, but did not did from it, he had so many health problems that his heart failed on him.  I'm 50 yrs old and I have a son that is 10 yrs old and he is diabetic.  My husband lost his job in March our cobra insur. is costing 365.00 going up to 965.00 in Dec. Don't know what we are going to do. We can no longer make our house payments, but thankfully we own a mobile home, that we will move into.  My son is suffering from anxiety, he feels like nothing is getting better in our lives, and that he will loose me.  I'm worried too.  I don't won't to leave him he needs me he is very short on family, he had health problems since he was born. If anyone has had IPMN or someone who has it please let me know.  I think one of the best things we all can do is pray for one another and read healing scriptures everyday, Joel Osteen's mother had terminal cancer and read healing scripures and was healed.  It takes alot of faith, but maybe we can do it.  I know the Lord loves us and he has a whole new world for us, one with no sickness.  Thanks for listening  God Bless you all with good heath.    Tonia http://www.cancercompass.com/message-board/message/all,40821,0.htm Tonia50 Mon, 19 Oct 2009 00:00:00 GMT Mom was diagnosed at the end of August with pancreatic cancer. It WAS operable, but with the delay of treatment it looks to have spread to her liver (a couple of small spots). I am only 21 years old and I cannot lose my mom! She is my best friend and I need her. This all happened out of no where. She is on a combination of Gemzar and Tarceva. She has only had one week of it, and will have her second iv treatment Thursday. My mom has felt fine so far...no major side effects. She only gets a little sleepy after she takes the tarceva pill every day but other than that she feels fine. She also was given anti-nausea medication to take with the tarceva. Will her feeling good the way she does now change? I know she will go though slumps that last a week or so, but overall, will she continue to feel good like she does now? I am terrified. I cry myself to sleep every night. I have read stories of the chemo itself wiping the tumors away. Anybody have any words of encouragement or stories that might help me?  http://www.cancercompass.com/message-board/message/all,40825,0.htm Birdie09 Mon, 19 Oct 2009 00:00:00 GMT Hi Netek, TreyK and VickiH.          To anyone with this question, I sggest that you do the research on a hospital and staff that has a lot of experience in doing the wipple.  I went to The Hershey Cancer Center in Hershey, Pennsylvania.  My team of doctors were Dr. Kevin Stavely-O'Carroll(Head of the Dept.) Dr Gusani (who did my wipple) and Dr. Kimchi.  This hsopital is known for its success with the wipple procedure.  I have been out 38 days recovering and I feel great, scars healing nice and now I am wondering just what activities I need to be doing in helping me to heal.  Hopefully someone can help me about this.  My wife suggest that I go to the local mall and become a mall walker with my friends.  I think and pray for all of you who are about to make the decision that my wife and I had to make.  God opened the doors for me to get in early and the cancer was small and located in an area that they were able to get it all out. The only thing that I have now is some muscle spasms which last about a minute to minute/half.   Good luck and God bless you all                                                                       Tom T. in PA http://www.cancercompass.com/message-board/message/all,40799,0.htm Dr_Tom Sun, 18 Oct 2009 00:00:00 GMT Looking for field trials or more info on treating pancreatic cancer, my moms is 5mm and has attached itself to her main artery that goes to her liver and behind vein that feeds her other organs? Does anyone have info of this same location and treating it? Could not complete whipple. Thank you for any info. http://www.cancercompass.com/message-board/message/all,40780,0.htm Laura1963 Sat, 17 Oct 2009 00:00:00 GMT Has anybody who has had the Whipple Op ended up with a swollen abdomen.  If so please let us know as my father has this and has been told it is a hernia.  Not sure what to do as he has been told to have another operation.  He did mention that it is caused through stitches being removed to soon and the wall is stretching.  ANY HELP WITH THIS http://www.cancercompass.com/message-board/message/all,40755,0.htm dereksdaughter Fri, 16 Oct 2009 00:00:00 GMT My Dad had the Whipple Procedure in March 2008 after turning yellow and has done fantastic although struggling now with trying to digest food.  Can anyone help. He did not do chemo and will not do this. http://www.cancercompass.com/message-board/message/all,40758,0.htm dereksdaughter Fri, 16 Oct 2009 00:00:00 GMT I keep reading everything that you all write and I realize that God is very good to me.  I am 65 and have always been very active but this pc has slowed me down.  I am sure that God has other plans for me.  I will wait and see. I am doing very well for it has been 30 days after my adventure at the Hershey Cencer Center in Hershey, Pennsylvania.  Stay positive and keep your chin up and remember that "Each day is a gift from God"!   Keep smiling and God bless you.         Tom Todd  http://www.cancercompass.com/message-board/message/all,40765,0.htm Dr_Tom Fri, 16 Oct 2009 00:00:00 GMT My father's belly has seem to have grown literally over night and we are going to have paracentesis done tomorrow. I was just wondering if anyone has had this procedure done and if there were any side effects. http://www.cancercompass.com/message-board/message/all,40656,0.htm j4jesus Wed, 14 Oct 2009 00:00:00 GMT