New Medicine?

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

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?

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

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

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

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?

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

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

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.

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