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Pancreas Cancer

To Kathy-my info was posted 10/01/2007 10:52 pm by LuckyGirl2
E-mail Address: luckygirl2@mail.com

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Hi Kathy,

I was diagnosed w stage 4 adenocarcinoma w liver mets (15 tumors) 2 years ago Nov. I have failed 3 chemo combos.. 1st was gemcitabine/Tarciva/oxaliplatin, which worked like a charm and then stopped working; Xeloda/irinotican (sp?), which never worked, and taxotere/epirubicin, which also did not work. HOWEVER.... I am down to one small tumor on the pancreas and 5 small liver tumors. So...the chemos may have 'failed', but they have kept the disease from progressing! The first combo of Gemzar/Tarceva/Oxaliplatin showed immediate effect. My 19.9 tumor marker dropped from 18,000+ on 12/21/05 to 19 by July 06. (Under 37 is normal.) PET/CT showed everything had disappeared. 19.9 then immediately started to drift up-- 37, 58, 130, 170 etc. End April 07 it was up to 1495. We did 2 cycles Xeloda and irinotican-- Xeloda was 3 weeks on, 2 off, and irinotican was 4 weeks on, 2 off. Marker continued to climb, tumors started growing. In July this year we went to epirubicin and taxotere. After one complete cycle, my 19.9 was at 14,000. I started researching clinical trials. We did a CT and the scan showed that the tumor on the pancreas and the few left on the liver had only grown by 10ths of a cm in 8 weeks. We don't know why my 19.9 went up like that, even though the tumors are growing. I then went into a clinical trial for Rexin-G. I just finished. What is great about this, and some of the other drugs that are in trial, is that it is not chemo so there are no side effects! I will know Wed. if it is working, but it has had an amazing response rate for PC. This is being administered at a different office from my regular onc, but I will be seeing him for a follow up. Dr Ed Wolin, my oncologist, is world famous. He has now saved my life 2x, (first with breast cancer 12 yrs ago) and literally saved my father's life when he saw Dr W after being treated at Mayo for CLL (chronic lymphocytic leukemia). He is the top onc in the world for one of the weird pancreatic cancers (not adenocarcinoma or islet cell, something else) so he knows his way around that part of the body. With PC mets he will say no surgery or radiation, just chemo. Dr W encouraged me to investigate clinical trials and said that he would still follow up with me. Of course if the trial I am in does not work, I will see what he has in mind next. I think I am on the right path. All I know is that I should have been dead a year ago, and I am healthy and functioning normally (other than those few nasty tumors).

I also think I am doing well because the Cedars Sinai Comprehensive Cancer Center has a great pain team (which also includes psychiatrists, who prescribed antidepressants and antianxiety meds), and they know a lot about dealing with side effects. For example, I was given a scrip for Neurontin and told to take glutamine for the neuropathy caused by the oxaliplatin. Also, I was told to take L-Lysine and B6 for the Xeloda hand and foot syndrome. I have mentioned these before on this board and a lot of folks did not know about this stuff. I never had surgery (other than the liver biopsy) so I never had to recover from that, which can cause a whole other set of problems.

I work full time, and pretty much feel great. I live by myself in CA (my family is in MN). I don’t exercise and I eat like crap because I don’t feel like cooking and have no willpower… oh well. I am in a PC survivor support group at the Wellness Community (look into it, and go if there is one in your area.) See page 2 of this newsletter for an article I wrote about my chemo http://www.cedars-sinai.edu/pdf/CSSurvivorJun07.pdf There are other PC/mets survivors who post here who have been around as long as I have, or longer. Keep asking questions, and keep reading!

Jennifer

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