CancerCompass message board discussion started by Strong Man on 7/7/2004 http://www.cancercompass.com/message-board/message/all,1213,0.htm Fri, 05 Sep 2008 00:00:00 GMT Fri, 05 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have Pancreatic Cancer while in Canada I read in their local paper about a new drug,that has been very successful for patients with pancreatic cancer, its called Virulzin. Has any one information about this drug?? Louis Strong Man Wed, 07 Jul 2004 00:00:00 GMT My only info is the article I read on CancerCompass. The article is "Benefits of Current Theorapeutic Options for Pancreatic Cancer . . ." dated June 14, 2004. It references a new Pharmacor study "Pancreatic Cancer" and therapeutic vaccines: Aphton/Aventis Pasteur's Gastrimmune and Lorus's Virulizin. I am starting to research these myself for my husband. I find it difficult to know what direction to head when many doctors almost write this cancer off as a lost cause, if the tumor is deemed unresectible. My husband had a bile duct stent placed March 2004 (time of diagnosis). He just had it replaced yesterday. Now we find out that the stent will need to be replaced about every 3 months due to blockage. I tried to talk to the GI Dr who did the stent replacement(by ERCP) about my husband's gall bladder which is showing potential problems in the last ultrasound. He said not to focus on the gall bladder. [Original PET scan (Apr04)showed the tumor has not spread to other organs, radiation treatment with a splash of chemo, CT scan (Jun04) shows tumor is same size, CA 19-9 has dropped from 99 (Mar04) to 33 (Jul04).] To me, these seems to be good signs. Does anyone have any thoughts? Laffriend Fri, 09 Jul 2004 00:00:00 GMT Thanks for the reply Linda and good luck to you and your husband,lets have positive attitude and think about living and not dieing. We don't want to be a statistic, we want to be a survior. Remember yesterday is History,tomorrow is a mistery, today is the present and that is why its called a Gift. Keep in touch, Louis Strong Man Sun, 11 Jul 2004 00:00:00 GMT Dear Linda, Sorry to hear about your husband. I am a pancreatic cancer survivor of nearly four years now. On November 3, 2000 they removed 40% of my pancreas, my entire spleen, a slice of my right kidney, and five lymph nodes. Fortunatley for me the cancer only spread to the first lymph node. I received aggressive chemo and radiation treatments 2months after my surgery. I had 24-hour infusion of chemo (5fu), for five weeks and radiation treatments five days a week for the same five weeks. Needless to say it was devastating! Then I had a second go of chemo, (gemzar), one day a week for nine weeks. My last treatment was on May 29, 2001. My survival chances of making it three years were anywhere from 2% to 20% depending on the doctor. I have never heard of the drugs that you are speaking about, and am surprised that they haven't appeared to my newsletter from PanCAN. I don't know if you have heard of them. It is Pancreatic Cancer Action Network. It is an organization based in California that is lobbying congress for more funds to support research into Pancratic Cancer, and to have November recognized as Pancreatic Cancer Survival Month. They have many representatives in several states who organize fundraisers for pancreatic cancer. There are several doctors on the board of PanCAN, and perhaps they have more info on the drugs that you are researching. They can be reached at www.pancan.org. I also believe that their website speaks of the latest clinical trials for pancreatic cancer. Pancreatic cancer is one of the most terrifying cancers out there due to the difficulty in early detection. I would think that the gall bladder would be crucial in treating pancreatic cancer. The only reason I say that is because I beleive that the gall bladder is one of the organs that is removed in the "Whipple Procedure" for pancreatic cancer patients. Is your husband's cancer in the head, body or tail of the pancreas? Has surgery been discussed? I continue to see an oncologist every 90 days for blood work and cat scans every six months. My four year anniversary is coming up on November 3, 2004. If I can be of further service, and you would like to communicate further you can do so through this message board. Best Regards to you and your husband...I will pray for his comfort and well being. Russ Russell Tue, 28 Sep 2004 00:00:00 GMT Dear Russ, I am so happy to hear about your good results with the treatment you received, and the fact that you will be celebrating a very special anniversary in November. My father was just diagnosed and we are trying to figure out what options may or may not be available to him. In another message you wrote that you had surgery at Univ of Pennsylvania Hospital. My father lives in that area. Can you give me the name of your doctor for my father? Thanks for your help. Mari Goldb243 Wed, 29 Sep 2004 00:00:00 GMT Dear Mari, So sorry to hear about your father. The surgeon at the Univ of Penn is Dr. Ernest Rosato. He is the Chief of Gastrointestinal Surgery at the University. He is great! I live in Mays Landing New Jersey, and when my doctor discovered I had pancreatic cancer he immediately referred me to Dr. Rosato at the Univ of Penn. That is where I continue to go for my oncology chekups. Is your father's cancer in the head, body or tail of the pancreas? How long ago was he diagnosed? What options are the doctors giving him? I have communicated with several people who have had pancreatic cancer and most of them have had the "Whipple Procedure". One woman had chemo and radiation first and then had surgey. But most of them, (as I did), had surgery first and then chemo and radiation afterwards. Best Regards and I will pray for your father. What is his name? Russell Wed, 29 Sep 2004 00:00:00 GMT Dear Marilyn, I thought that I would send you the name of my oncologist as well. It is Dr. Haller and he is the Chief of Hematology/Oncology at the Univ of Penn. Best Regards, Russ Russell Wed, 29 Sep 2004 00:00:00 GMT I am sorry for the delay in responding. My husband passed away on the 18th of August 2004. His tumor, in the head of the pancreas, was considered inoperatable. His treatment was radiation 28 times with a 'splash' of chemo. The radiation was five days a week for five and a half weeks. Chemo (5FU) was giving the first three days and the last three days of radiation. Then a month before another CT Scan. He tolerated this treatment remarkably well except for the nausea. But it was hard to tell if the nausea was from the treatment or the cancer. It seems he never could get on top of the nausea from prior to diagnosis to the end. He started additional chemo (Gemzar) the beginning of August. He had two treatments before he died. I am glad you shared your story with me. It is encouraging to hear your story as a survivor. Congratulations on your fourth anniversary as a survivor! I have passed your message on to another friend whose husband just had surgery for pancreatic cancer. It has only been about a week. He is so discouraged because of the pain. I have tried to be encouraging for both of them. What I have read on the Whipple Surgery seems to be so positive after the initial healing from the surgery. I would like to hear your thoughts on nutrition while fighting pancreatic cancer. But then maybe your experience would be different since you were able to have surgery. The area we found confusing/conflicting is the issue of protein, especially albumin. Some of the information we researched indicated that the body is not able to digest the protein while impaired with the pancreatic cancer. I asked if he should eat less protein so as not to tax the pancreas during treatment. Yet our doctor insisted he needed to eat more protein because his albumin levels were low. I inquired about taking pancreatic enzymes to help with digestion but was told they were not indicated. Thank you for the information regarding PanCan. I am aware of this wonderful organization. We found so much help and encouragement from them. Will you be attending the PanCan Symposium this weekend in S. CA? I will be attending. I am not sure what to expect from the conference but I think it will help me with closure. Thank you again for your message. Linda Laffriend Mon, 08 Nov 2004 00:00:00 GMT Dear Linda, I am so sorry to hear about your husband...it is so sad to hear. There is nothing that I can say to heal your pain and suffering. Your's is the second email that I have received in the past two weeks, (from this website), where someone has lost their husband to pancreatic cancer. The only thing that I can do is to continue to share my story with other cancer patients in hopes of giving them the strength and confidence to move forward. I live in New Jersey and will not be attending the PanCAN Symposium in California. I do hope that it provides you with some closure. Below is a copy of my annual email that I send to all my family and friends. Hello to All... Today, (November 3rd), is the fourth anniversary of my surgery for pancreatic cancer, and I cannot tell you how blessed I feel to have survived this long. It seems just like yesterday that the doctors were telling me that I had a 2%-20% chance of making it three years...(depending on who I spoke with...the surgeon, the chemo oncologist, or the radiation oncologist). I told them long ago...whatever that number is, I'm in on it! And now I am convinced that I will be around a bit longer. Even though I am in remission, this disease is with me everyday. I struggle with fatigue, nausea, and pain, along with a series of other things. I had a tough time with the shingles this past summer, and my battle with neuropathy is getting worse. I have pain in my left buttocks area, my right thigh, and have tingling, numbness, and shooting pain in my feet. It gets so bad at night that I lay in bed with my legs pulled up to my chest shaking my feet, (I now take medication for this as well). I am up to a variation of 28 pills a day, and B12 injections once a month, but hey...what's the alternative! I have learned to accept the fact that there is not a day that goes by when I don't think about dying...but it's okay. I am 60, and I am forunate to have spent 37 wonderful years with my wife. I have seen my children grow, develop into fine young adults, and begin their own families. Our daughter married into a wonderful family this past October 9th, and our daughter-in-law is expecting our first grandchild around December 19th. What more could a person ask for in life...I am alive, and there are so many people who suffer far more than I do. My problems pale in comparison to theirs...but there are days when I find myself saying...this is so difficult! But we must refuse to give in to this disease...so every once in awhile I look up towards heaven and say...thank you Lord, I am really enjoying my life right now! Over these past four years a few people that I know have become victims of cancer. One of them is my cousin's eldest daughter Jennifer. She had surgery for cervical cancer this past summer, and is now undergoing treatments. Please pray for her...she needs our support during these difficult times. I have also been communicating with several other people as well as their families. I feel their pain and I truly hope that I am able to provide them with some comfort and inspiration. Every time I hear of a family member, or a friend who has cancer, I cannot help but think of how horrible this disease really is...and there is absolutely nothing that any of us can say to make that person feel any better about having cancer. The feeling of hearing those words...you have cancer...is so hard to describe. For some it's instant fear of dying; for others it's anger, while others feel great sadness. I guess for me it was total shock...then sadness, and finally fear began to set in. Others go through denial, or they ask...why me? All of these emotions are so very real! And believe me when I tell you that I have asked myself so many times...why me? I ask that question not because of having cancer, but why I survived, and others didn't...why me? I have lost some friends and even a family member this past year to cancer...so why me? Last year, in my three year anniversary email, I mentioned Lance Armstrong, (cancer), and Michael J. Fox, (Parkinson's disease), and what they said about having no regrets...and I said that I didn't think I was at that point in my life yet. Well this year, on my fourth anniversary, I believe that I may be there. Maybe I survived because I am suppose to tell my story to others by giving them the strength and confidence to move forward...I really don't know for sure. But I do know that when I reach out to others it is such a heart-warming experience for me. But it can also be draining for me emotionally because I relive everything all over again...but the rewards are far greater! Last month I joined Gilda's Club, and have attended some Wellness Group meetings for men & women who live with cancer, (my wife joined me at last night's meeting). Early on, in my battle with cancer, I felt that this was something that I wanted to do...but I just wasn't ready until now. If any of you know someone who has cancer...spend as much time with them as possible...especially during their treatments, and recovery process. Not because you may never see them again, but because it is during their treatments that they need family and friends the most. It is during these times when they are with family and friends, laughing and enjoying your company, that they can forget, (just for a few moments), that they have cancer. It gives them the added strength to go forward with their treatments. On the other hand many cancer patients find it therapeutic to talk about their cancer...so don't be afraid to ask about their treatments, and how they are doing. I remember when I first returned to work, (during my second go around with chemo treatments), a coworker came up to me in the hall and said that he saw me a couple of weeks ago but had been avoiding me because he didn't know what to say. I told him not to worry...that I understood how he felt. I told him that he could ask me any question that he wanted to about my cancer. But as some of you know, when you ask me any question about cancer, be careful...you're likely to get a two page email from me. But that's how passionate I am about surviving cancer. If you don't fight this disease with a passion that defies all that it does to you...then you let it control your life. And don't forget that there are cancer victims out there that are unable to muster up such a passion...so it is up to those of us who have survived to reach out to them. I was in Chicago this past June to walk in the National Cancer Survivor's Walk along Lake Shore Dr. I walked with my son, his wife Andrea, Ken & Roberta Wilk...along with Lydia and her family. Lydia is the reason why I participated. She is the young lady that I have been communicating with for 3 1/2 years...she too is a pancreatic cancer survivor. She walked last year and wrote my name on the dedication wall. She asked me if I had time to come to Chicago this year to walk with her. I did...and it was great! I plan to visit Chicago in June of every year to walk. I know that Jennifer will be walking with us next year...and I am so looking forward to walking with her. I believe the walk is sponsored by the Chicago Northwestern Memorial Hospital. It is usually the first weekend in June...I hope to see some of you out there. As many of you already know...I have been retired for two years now...and so glad that I made that decision. Once again...my family and I would like to thank all of you for your continued support, and please remember to pray for Jennifer. If you would like to get in touch with me, please send me a message. Russell Tue, 09 Nov 2004 00:00:00 GMT Hello,Russ, I had surgery in May that removed 40% of my pancreas and my spleen. Since it was a contained small non agressive cancerous tumor, I decided to wait before doing chemo and radiation. There are now some cancer cells showing up on the PET scan exactly where the surgery occurred and my CA-19 marker is elevated. I am planning to start 5FU and radiation for 4 weeks. You mentioned that it was devestating and wonder if you can tell me what your experience was with this drugs. Did any drugs help you with being sick from the drugs? I am still stage I pancreatic cancer and am hoping to beat the odds. I am doing alternative things like hynotherapy, lots of vitamins, accupuncture. I do have to take digestive enzymes and I certainly don't eat alot nor have much of an appetite. I worry about keeping my strenght up while doing chemo/radiation. Any advise? This is the first time I have used this site. Thank you Dianecr Tue, 28 Dec 2004 00:00:00 GMT Hello,Russ, I had surgery in May that removed 40% of my pancreas and my spleen. Since it was a contained small non agressive cancerous tumor, I decided to wait before doing chemo and radiation. There are now some cancer cells showing up on the PET scan exactly where the surgery occurred and my CA-19 marker is elevated. I am planning to start 5FU and radiation for 4 weeks. You mentioned that it was devestating and wonder if you can tell me what your experience was with this drugs. Did any drugs help you with being sick from the drugs? I am still stage I pancreatic cancer and am hoping to beat the odds. I am doing alternative things like hynotherapy, lots of vitamins, accupuncture. I do have to take digestive enzymes and I certainly don't eat alot nor have much of an appetite. I worry about keeping my strenght up while doing chemo/radiation. Any advise? This is the first time I have used this site. Thank you Dianecr Tue, 28 Dec 2004 00:00:00 GMT Hello, Russ, this is the first time I have used this. I had surgery in May and about 40% of my pancrease (tail) and my spleen were removed. It was a small non agressive tumor so I decided to try other alternative things before chemo/radiation. My markers are going up and PET scan indicates cancer cells at site of surgery so I am going to start 4 weeks of 5FU and radiation. You mentioned it was devastating and wonder what you meant by that. Did you take anything to offset side effects? Were you able to eat? I am 56 and in basically good health. This is still stage I pancreatic cancer and I am hoping to beat the odds and have many years of living. I am also doing hynotherapy, naturopathic care and am thinking of accupuncture. So would like to know if you incorporated anything else into your recovery. Thanks Diane Dianecr Wed, 29 Dec 2004 00:00:00 GMT Hi, Russ, this is the first time I am using this. I had surgery in May and 40% of my pancreas (tail) and my spleen were removed. I only did alternative care for the last many months but now my markers are elevated and my PET scan shows cancer cells at the site. I am 56. So I am starting 5FU and radiation for 4 weeks. You said that it was devastating and wonder what you meant by that. Were side effects terrible? Did you receive any medication that helped? Were you able to eat? I still have stage I Pancreatic cancer and am hoping to be a survivor. Congratulations to you and thank you for sharing. Diane Dianecr Wed, 29 Dec 2004 00:00:00 GMT Hello, Russ, thisis the first time I have used this. I had surgery in May and about 40% of my pancreas (tail) and my spleen were removed. It was a small non aggressive tumor so I decided to try other alternative things before chemo/radiation. My markers are going up and PET scan indicates cncer cells at site of surgery so I am going to start 4 week of 5FU and radiation. I am 56 and in basically good health. You mentioned it was devastating and wonder what you meant by that. Did you take anything to offset side effects? Were you able to eat? I am still in stage I pancreatic cancer and am hoping to beat the odds and have many years of living. I am also doing hypnotherapy, naturopathic care and thinking about accupuncture. So I would like to know if you incorporated anything else into your recovery. Than you very much. Sincerely, Diane Dianecr Sat, 01 Jan 2005 00:00:00 GMT Hey Russ, My 62 year old mom was diagnosed with pc over the christmas holiday and is scheduled for a whipple procedure at U-Penn this Monday. She is very scared and upset. I will share your note with her and be there for here. I hope you continue to have more successes in your recovery. You have done folks a world of good through your e-mails. Any thoughts, ideas, websites, etc. you could recommend would be appreciated. I've been to the Penn website, the Hopkins website, etc. Thanks and God Bless. Craig Craig k Tue, 04 Jan 2005 00:00:00 GMT Dear Diane R. I saw that you sent at least five messages, (all the same), but today is the first time that I received notification. I am sorry to hear that you declined chemo and radiation treatments in the beginning. Pancreatic cancer is one of the deadliest cancers out there. In any case, with regard to my treatments being so devastating, it was because of the protocol of 24 hour infusion of chemo at the same time as 5 days a week of radiation. The nausea was terrible for me...it may not be as bad for you. Everyone reacts differently. There was nothing that helped me with my nausea or vomitting. I tried kytril, compazine, adavan, and some others. In the end the doctors even tried marinol, (the closest thing you can get to marijuana and still be legal...that didn't work either. In addition I had a battle with mouth sores, red hands, and extreme fatigue. But to me the alternative was much worse. As far as keeping up your strength...bed rest is probably your best bet. During treatments you are going to need to get as much rest as possible. It is also important that you try to eat something. The best thing for me to eat during all of this was a bowl of Cheerios with half a banana. At stage I...I would think that you have a very good chance of beating the odds...look at me; I was stage III and I am a four year survivor. Good luck to you and I will pray for your recovery. Again, my personal email address is probably the best for further communication. Please do not hesitate to contact me at anytime with any questions. I know how difficult this can be at times. I am also a member of the Gilda's Club. Take care...Russ Russell Wed, 05 Jan 2005 00:00:00 GMT Dear Craig K. It is so sad to hear of the struggles of someone who has been stricten with pancreatic cancer. I know the anxiety that both of you are going through right now...and I wish there were some magical words that I could say to make you and your mother feel better. There are no words, but my prayers are with you both. If you go to the website: americancancer.com and then at the bottom of this site type in pancreatic cancer, it will take you to several other sites that deal with pancreatic cancer. I am also a member of PanCan.org. It is an orginization that works out of California, (with several local representatives across the country). They raise money for research, and lobby Congress for the same. They are also trying to get Congress to declare November as Pancreatic Cancer Awareness Month. They may have other services that may be of help to you and your mother. In any case...please let me know as quickly as possible how your mother's surgery goes. Please do not hesitate to contact me at anytime. I only hope that I can be of further assistance to you. Sometimes it helps a lot just to be able to tell your story. My prayers are with your mother...Russ Russell Wed, 05 Jan 2005 00:00:00 GMT Hi Russ, My Father in law turned jaundiced New Years Day. He went to Thomas Jefferson Hospital in Philadelphia to get checked out. They found that his bile duct was blocked causing the jaundice. They attempted to place a stent in the bile duct but were unsuccesful. They did an ultrasound and found nothing. They did an MRI and found a 1.5 cm mass on the head of the Pancreas. I don't believe a biopsy has been done yet. Anyway his been there for about a week now and the doctors still haven't found anything conclusive. Basically still scratching their heads. One surgean did mention something about possible surgery. Is it possible the mass found on the x-ray is not cancerous. Were hoping thats the case. You mentioned your doctor was Ernest Rosato from Univ of Penn. My Father in Laws doctor is Ernest Rosato of Thomas Jefferson. Is this the same doctor? Apparently he is the son of Francis Rosato. I am glad to hear you are doing well. Thanks, Andrew Russell Sun, 09 Jan 2005 00:00:00 GMT Hi Russ, My Father in law turned Jaundiced New Years Day. He went to Thomas Jefferson Hospital in Philadelphia to get checked out. They found that his bile duct was blocked causing the jaundice. They attempted to place a stent in the bile duct but were unsuccesful. They did an ultrasound and found nothing. They did an MRI and found a 1.5cm mass on the head of the Pancreas. I don't believe a biopsy has been done yet. Anyway his been there for about a week now and the doctors still haven't found anything conclusive. Basically still scratching their heads. One surgean did mention something about possible surgery. Is it possible the mass found on the x-ray is not cancerous. Were hoping thats the case. You mentioned your doctor was Ernest Rosato from Univ of Penn. My Father in Laws doctor is Ernest Rosato of Thomas Jefferson. Is this the same doctor. Apparently he is the son of Francis Rosato. I am glad to hear you are doing well. Thanks, Andrew Andrew b Mon, 10 Jan 2005 00:00:00 GMT Andrew B. Get to Dr. Ernest Rosato...affiliated with U-Penn. He and his team will give you the straight answer and discuss alternatives. Don't wait. Call his office and get an appointment. Go to this website for more information. http://www.pennhealth.com/Wagform/MainPage.aspx?config=provider&P=PP&ID=1604 Good luck. Craig Craig k Mon, 10 Jan 2005 00:00:00 GMT Dear Andrew, I am so sorry to hear about your father-in-law. The Dr. Rosato that did my surgery is the chief surgeon of gastro at the University of Penn and is also a teaching professor. He is very well known and is very good at what he does. I highly recommend him. I don't know if he is the same doctor. Yes it is possible that the tumor is not cancerous, but I am not an expert. Since pancreatic cancer is one of the most deadliest of all cancers...I would not wait!!! Please keep me up to date...and please tell your wife that her father is in my prayers. What is his name? Best regards...Russ Russell Mon, 10 Jan 2005 00:00:00 GMT Hi Russ, I'm Andrew's wife. My father's name is Tom. My father is doing very well now. He just had Whipple surgery on Wednesday and he pulled through the operation fantastically. Luckily, the surgeon was able to remove all of the tumor and it did not metastasize. (Thank God!) We have not gotten the lab reports back, but the doctor believes that it was cancer. We are very lucky that he had turned yellow from jaundice. It was a lifesaver. I know we are not out of the woods yet, but his prognosis is good. My father's surgeon, Dr. Rosato is the nephew of the surgeon who operated on you. They are a very talented family. Take care of yourself and thank you for your prayers. Jennifer Jbeva Fri, 21 Jan 2005 00:00:00 GMT Dear Jennifer, I just told my wife that I was going to check my email messages again tonight because my cousin's eldest daughter, (Jennifer also), was having her first cat scan after having cervical cancer. She had surgery this summer, and has been going through aggressive treatments. She was so afraid of the results of her cat scan this week. Well there were two messages on my computer...one from my cousin and one from you. And both messages were of great news!!! I am so glad for your father that they were able to catch this early. Yes it was a good thing that he turned yellow. Unfortunately for me I had a pain under my left rib cage for two years before they found out what it was. I am so glad that they sent me to the Univ of Penn and Dr. Rosato. Your father went through a very difficult and evasive surgery. Will your father have chemo and radiation treatments? Will they be at the Univ of Penn? I still go there to see Dr. Haller every 90 days for blood work, and cat scans every six months. If your dad goes there for treatments, maybe our paths will cross some day. My next appointment is March 17th. Tell your dad that I continue to pray for him. I would love to hear from him and how he is doing. If you or anyone in your family have any questions about anything please do not hesitate to contact me. Ever since my cancer I feel compelled to reach out to others with this horrible disease. Thank you for keeping me up to date on his progress. Take care and please keep in touch. Best Regards, Russ Russell Fri, 21 Jan 2005 00:00:00 GMT Dear Russ, I am happy to hear that your cousin's daughter got great news! It makes you feel so good. My father is coming along. It's a long, rough road as you know and this is just the beginning. We have gotten the lab reports back from his biopsy and the tumor was cancerous but his lymph nodes are clear and the margins are also clear. My father has been in the hospital for over a week. We are trying to keep his spirits up, but he is getting very depressed. He is 72 years old and by no means is he an average 72-year-old. He is very active and independent and this is very hard for him. People who meet him cannot believe how old he is. We are not sure if my father will have chemo or radiation treatments. We are still waiting to consult with the oncologist. My personal opinion is that I think it is a very good idea and my mother and the rest of my family think so too. My father did not have his surgery at U of P. He had his surgery at Thomas Jefferson Hospital so I am assuming that is where he will receive treatments. I guess this is a question really for his doctor but since they caught it so soon and they were able to remove it, I'm wondering if there could be a reoccurrence? This has been such a traumatic and shocking experience for my father as well as for me and my family. I just want to say that I am so grateful for people like you who give comfort and solace. I wish you continued good health and my prayers are with you. Jennifer Jbeva Wed, 26 Jan 2005 00:00:00 GMT Dear Jennifer, It sounds very encouraging that they caught the cancer early. Mine was at stage III, and I had very aggressive treatments. I strongly believe that is why I am here today...along with all the prayers from so many people. I am so sorry to hear that your father is feeling depressed, but I remember when I was going for radiation treatments. You go the same time every day so you get to see the same people who are there for the same thing as you...only they have different types of cancer. Well one day a new person joined our group...a young lady with breast cancer. She said...hello how are you doing? One guy leaned over to the guy sitting next to him and said...that should be on the top ten list of things that you don't ask a cancer patient. Then he said...how do you think I am doing? I thought to myself what a shame that this guy has to be so bitter. But then I realized that it's okay. If you are mad about having cancer... that's okay then be mad. If you are sad about it...that's okay then cry and be sad. What ever your feelings are...get them out now; because eventually you will realize that it is time to spend all of this energy on your recovery process. None of us can ever deny ourselves these fears, and emotions, but we cannot allow ourselves to dwell on them either. There is no doubt that this horrible disease effects the whole family, and it would be very easy for any of us to sit in a corner, and talk ourselves into a state of depression...BUT WE MUST REFUSE TO DO SO! I will continue to pray for your father and the family as well. Please keep me up to date on his progress. Best Regards, Russ Russell Thu, 27 Jan 2005 00:00:00 GMT Dear Jennifer, I don't remember if I told you about an organization called PanCan, (Pancreactic Cancer Action Network). They can be reached at www.pancan.org. They are a great organization that lobbies for awareness and research of the most deadiest of all cancers...pancreatic cancer. They have made November Pancreatic Cancer Awareness month and are trying to get Washington to declare the same. Check out their website and see if there is something that may help your father, you, and/or the family. Take care...Russ Russell Thu, 27 Jan 2005 00:00:00 GMT Dear Russ: After reading the messages posted and especially after reading your message of hope for everyone, I decided to write to you to let you know that like you, I have been surviving pancreatic cancer going on 5 years (I was first diagnosed in April of 2000). After having the Whipple procedure and undergoing the 5FU chemo and radiation, I stopped as the cancer didn't seem to be doing anything (remission I guess) in 2002 my CA19 started moving up the charts again in the thousands. I received gemzar treatments for two years. My CA19 went down to 33. I had to stop because my bone marrow was saturated and basically, it wasn't doing anything anymore. Within the last couple of months (probably starting in late October early November), the cancer has spread to my liver, lungs and ribs. I started out and got my surgery at University of Penn. Great hospital. My treatments had taken place at Riddle Hospital in Media. They have a pretty great staff there. It is pretty much unheard of for people to survive the first 6 months after learning they have P.C. let alone 4 or 5 years. I have to say congradulations to you! I am going to see a doctor at Fox Chase on the 11th to find out what else I can do. My diet has been changed, I take many vitamins, not to mention the countless medications needed. (They removed pretty much everything on the inside, I only have 1/2 what everyone else has. I'm 55 years old and not ready to give up. Since you have survived this long, are there any suggestions you might have as to what else might be out there to take care of these "secondary" cancers? The bone cancer in my ribs is spreading faster and I'm looking into anything that may be helpful. If you have any other suggestions, I would really appreciate it! My prayers will be with you and your family! Thank you for your time. May God bless you and yours! Marsha Marsha B. Tue, 01 Feb 2005 00:00:00 GMT Dear Russ, I forgot to mention that I also had stage III pancreatic cancer when it was first caught. Now, I believe I'm in Stage IV...final stage. I'm not ready for "final" yet. As stated before, any help you could offer would be appreciated. God bless. Marsha Marsha B. Tue, 01 Feb 2005 00:00:00 GMT Dear Jennifer: I have pancreatic cancer and also had the whipple procedure in 2000. I had stage III. you asked Russ about chemo. I was first treated with 5FU and radiation. I do not recommend radiation for anyone. I had a terrible reaction and was very sick with this first chemo. I would suggest gemzar as a chemo treatment. It was not as harsh, I was not as ill (just a little tired for a day or two) and it helped. When i first started gemzar, my CA19 (tumor marker) was in the high 1000's. After all the treatments i received, my count was down to 33. I felt great during my treatments, but because after two years of this chemo, and my bone marrow being saturated, I had to stop. Now, i have tumors in my liver, lung and bones. the tumors in my lung and bones happen to be in the same place i received the radiation treatments. Everyone handles things differently, but i really feel that the gemzar would be beneficial for your father. Good luck and my prayers will be with your entire family. God bless. Marsha Marsha B. Tue, 01 Feb 2005 00:00:00 GMT A friend was just dx with pancreatic cancer...I don't have all the details, just that they removed the gallbladder and said the tumor was inoperable. She is in Stage 1. I had read about Norman Arnold who was dx in 1982 with inoperable pancreatic cancer and was given 6 months to live. He tried chemo even though it wasn't advised by his drs and gave up after 5 sessions because he felt it destroyed his quality of life. He then used imagery and went on a macrobiotic diet. All this is well documented. His tumor disappeared in (I believe) it was 6-8 months and he is alive today from what I understand. He apparently is very important and very wealthy and a big philantropist....so he has made his story well known and I believe there is even a book about his recovery and experiences. When they returned to the doctor who had said that it was inoperable, that he had 6 months max, and there was absolutely nothing to be done, and the doctor saw he was cured, he refused to believe it was from the diet and said it must have been an 'instantaneous remission'. His wife said 'you never told us that that option was available to us, you told us we had NO options'. It is amazing that even when the drs can do nothing for their patients, they don't advise them to seek out alternative methods that have proven to be helpful in many cases. I have informed my friend about this, and also about the flaxseed oil/cottage cheese mix of Dra. Johanna Budwig. I believe there are options available.... Samag Wed, 09 Mar 2005 00:00:00 GMT Hi Russ, Thanks for answering the messages. My case seems similar to your, as I am also Stage 3 and have taken 5FU + radiation. Now I am doing gemzar cycles. This is the standard regimen at JH. I'm wondering what treatment did you have? Thanks a lot for your help. take care, Vail Plato10 Mon, 28 Mar 2005 00:00:00 GMT Dear Vail, Did you have 24 hour infusion of 5fu? I had a port implanted in my chest and had 24 hour infusion of 5fu for 5 weeks, and radiation at the same time for 5 weeks. It was devastating! Then I had Gemzar one day a week for 9 weeks. How do you feel now? I am 4 years from my surgery and doing pretty good. I was 56 when I had my surgery, and now I am 60 years old and decided to retire on disability. I still struggle with nausea, pain and fatigue. As a result of losing 40% of my pancreas I have become a diabetic and have a bad case of neuropathy and postherapetic neuralgia from the shingles. I had cat scans done every 90 days for the first 2 years, but now I go every 6 months. But I still go every 90 days for blood work. I don't know how many of my messages you have read, but once again you must fight this disease with a passion that defies every thing that it does to you...otherwise it will control your life. Over these past 4 years I have had many moments where I still cry...and that's okay, as long as we don't dwell on these emotions too long. Any one of us could sit at home and talk ourselves into a state of depression very easily, but we must refuse to do so. Do you have a family of support? Is there someone who goes with you to your treatments? I remember my treatments with Gemzar. They were always on Tuesdays. My wife would drive me to the University of Penn and our daughter would meet us there...every Tuesday! She would call it Tuesdays with Dad. Family and friends are so important...especially during your treatments. Please keep and touch so I know how you are doing. Ever since my surgery I have felt a need to reach out to others. I joined Gilda's Club about 6 months ago and go every Tuesday night. Take care of yourself and I will pray for your recovery and comfort during treatments...Best Regards, Russ Russell Tue, 29 Mar 2005 00:00:00 GMT Dear Marsha, I was going through the emails on the Cancer Compass and I noticed a message you sent to me, but I don't recall ever receiving it. I am so sorry that I didn't get your message earlier. Perhaps you didn't check the response box. In any case I am sorry to hear about your battle with pancreatic cancer, and the fact that it has spread to your liver, lungs and ribs. Are you currently receiving any treatments? It is very difficult for someone like myself to give medical advise. Even though I have been through a lot, (not nearly as much as you have), I can only relate to what I went through and how my treatments affected me. I received 24 hour infusion of chemo (5fu), and radiation at the same time for 5 weeks. then I went on Gemzar for 9 weeks. Since then I have been in remission and my last cat scan in March was clean. You sound as though you are in pretty good spirits, and I encourage you to continue to defy all that this disease throws at you. If you don't...you will let it control your life. It is up to people like myself, who have survived pancreatic cancer, to reach out to those who suffer today, and to provide encouragement to those who can no longer muster up the passion to fight this disease. Hopefully I am able to provide the confidence and strength for others to move forward in their lives as they struggle with this horrible disease. God Bless you and I will continue to pray for your comfort...Best Regards, Russ Russell Fri, 22 Apr 2005 00:00:00 GMT Hi Russ. This is my first time on this message board and I see that you had your whipple the same day and year that I had mine. 11-3-00. My cancer was in the head of the pancreas and I also went on 5Fu 24/7 and radiation for 6 weeks. I had been doing great until Sept. of this year and they found a spot on my liver. I had neuroendocrine cell cancer and they are pretty sure that is what has moved to my liver. I was wondering about Gemzar. I've never heard of this drug and I am going to ask my oc about it next week when I go back and have him read me my last ct results. He said that right now there is nothing that he can do about this but, there is new drug that hasn't been approved by the fda yet that shows promise for this slow growing cell. If you have any info on this new drug and can give me info on Gemzar I would greatly appreciate it! I hope you are still doing good! You and all of the people on this board are in my thoughts and prayers. I'm a very firm believer in the power of prayer!! Have a great day and God Bless. thanks for any info you or anyone else has. Doug Doughbelly Thu, 29 Dec 2005 00:00:00 GMT Hi Doug, It was good to hear from you...and the fact that you and I had surgery on the same day five years ago. I am so sorry to hear that yours has spread to your liver. I don't know much about Gemzar except that its correct name is Gemzitabene, (sp?). I had 24 hour infusion of 5fu for 5 weeks and radiation at the same time. Then I had Gemzar for 9 weeks, but only one day a week. I am sorry but I have not heard of this new drug to treat pancreatic cancer. But hang in there, because they are always coming up with something else to treat this horrible disease. My prayers are with you...and don't be concerned about being too wordy in your emails...I do the same thing. You should see me email that I send out to all family and friends on my 5 year anniversary. What part of the country do you live in? I live in southern NJ and had my surgery done at the Univesity of Pennsylvania...also my chemo treatments. Keep in touch, Russ Russell Fri, 30 Dec 2005 00:00:00 GMT Russ. So glad to hear that you are doing good!. The last message that I read from you had been a while. I live in central Mo. I had my surgery, radition, and chemo done at Barnes-Jewish in St. Louis. Since my therapy ended in Feb. of 2001 I had been doing good but, when I went back for my 6 month check up this past Sept. they found the spot on my liver. I went back for a triple phase ct of my liver and they found 3 more smaller ones. My oc said that if I had only one that I would be a good candidate for surgery but, since they found more that wasn't a good option. This new drug that I think my oc was talking about is called SU11248. The article I got this from was from Medical News today and it was dated 5-17-05. I don't have a clue if this is the drug he was talking about or not but,the way the article read it showed some promise! I'm going to ask him about it next Tuesday (1-03-06) I just had another ct last week and he is supposed to give me the results. I've been working since I got off of chemo and radition. I can't say that I'm back where I was before all of this started but, at least I'm still here thanks to all of the prayers and blessings! I was 47 when they first found this and I just turned 53 the 10 of this month so I have been very blessed. I hope whoever reads this will find some kind of comfort knowing that there is always hope! So please don't give up! I appreciate your thoughts and prayers. I'm a very strong believer in the power of prayer! You are in mine and my family's also. Thanks for answering and stay well. I'll keep you posted. Doug Doughbelly Fri, 30 Dec 2005 00:00:00 GMT Doug...I have been communicating with a woman in Highwood. Illinois. She just passed her two year anniversary of pancreatic cancer. However I am sad to say that it has returned to her pancreas and her liver. If she qualifies she will undergo a phase one trial of a cocktail with FDA approved drugs; Taxatere, Oxaliplatin, and 5Fu. All of which have been used individually to treat cancer patients, but never before have they been used all together. Her treatments will start after the 1st of the year. Her initial treatment will require an overnight stay at the hospital, and than outpatient treatments. Just wanted to let you know about these drugs so that you may ask your oncologist about this trial. In any case...you are in my prayers, and keep me posted. Russ Russell Fri, 30 Dec 2005 00:00:00 GMT