New Medicine?

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

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

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

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

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

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

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