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Need HELP or advice and chemo drug names & questions **NEWBIE**

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Hello to everyone....I was diagnosed June 17th of 2011 with stage IV stomach/distal junction/esophageal cancer with mets to the outlying peritoneal lymph nodes in upper chest and over kidney and heart and so forth. No spreading to other organs or into blood or marrow or bones or etc. SAME story as many of you posted here. Vandy has still really not decided if they want it to be stomach or esophageal cancer! They are guessing. I am currently being treated at Vanderbilt University Ingram Cancer Center in Nashville, TN (rated 14th in the country recently out of 500 cancer hospitals for what that's worth).
I have been offered a clinical trial that will be the same chemo drugs no mater what, and one investigatory 'unknown/unnamed' drug that is new, so I will get the chemo that my oncologist wanted to do with or without the trial. I have swung between NOT starting chemo yet, as I am still able to eat fine and have pain under control, and feel so good compared to so many with this stage and diagnosis, and starting right away. The waiting part is from the idea that until things get somewhat worse I really need to gain weight and get back closer to the 185 I was at before I started having the swallowing trouble like everyone else, that drove me to see the GI doctor, that diagnosed me in June. The endoscopy enabled me to swallow again. I have gone from 123 pounds back to over 140 now so I am taking this time to build up strength. Otherwise, the small-town oncologist wanted to admit me to the hospital and do only one chemo drug (taxotere) in a week long SLOOOOOW infusion due to my weight and weakened state, and Vandy wants to do "normal" chemo infusion with the three drugs I get to below, in a trial. I opted to go to Vandy as it was the small-town oncologist that we saw first who gave me the usual 1 year at best and no hope...
At first, Vandy gave us all the hope in the world, do 9 rounds of chemo, surgery and 9 more rounds of chemo and go live the rest of your life CURED!! (their words) That was, until they got the PET, long needle biopsy of outlying nodes, and CT results. Then VANDY also changed me to the 1 year at best with chemo, less without, and the thoracic department cancelled my initial appointment after the pathology came in, and refused to even meet with me! What fun.
OK so after all of that information so you know where I stand, HERE are my questions:
1) How many of you have WAITED or not done anything or any chemo at least (I am eating a great diet and reading everything I can find on winning) [they offered NO radiation as a treatment, but palliative for my esophagus to open it up if needed to swallow at a later date] for a period of time or until now even, and are still doing okay, and
2) The THREE drugs they want to do at VANDY for MY chemo are similar to many of you, many I have read here (and I have read almost every post I can find under STOMACH and ESOPHAGUS cancer so far before posting this) except for ONE of them. The ONE I have never seen mentioned is called LEUCOVORIN and also known as FOLINIC ACID (The FOL in my FOLFOX). What is it and why do I not see many others doing this one, although I DO see FOLFOX mentioned?
The other two chemo drugs are all over the boards, and they are 5-FU or 5-Fluorouracil and Oxaliplatin (sounds like the fun one!) so I get those.
There seems to be some who respond to some and not others, and I get that.
My ONCOLOGIST has a plan B and a plan C that have many of the other chemo drugs that many of you have done, and she wants to start out a LOW LOW doses so the side effects are minimized, as I am not okay with loosing my quality of life for an extra 2 months and she knows this well.
What they have told me is that the best hope is to stop the growth or spread at best, no shrinkage is expected at all, ever, and that I will NEVER be a candidate for surgery to them (I do know I can find a surgeon on my own who WILL do the surgery if I fight for it; I have read the posts from others so I DO know!) so plan for life extending chemo that basically has NO end in sight (her reason for the low dosages and minimal side effects as a main concern to her) except basically palliative chemo and care. They want me to know that the side effects will be there, just light they hope, and that they cannot make it go away and any surgery and shrinkage will only result in a recurrence later- so don't get hopes up to live for long no matter what. I know there is hope. I am just stating what I have been advised by this team, for now.

I am sure I have rambled and just hope that you all can make sense out of all of this to advise me! SO much information and so many depressing things to hear. I am NOT depressed, I LOVE my life, I love life, period, and I love my wife. I am a fighter and I KNOW I can win!

I get that they don't know and it's all up to me to fight and have the positive attitude.
I am good with whatever life brings my way. My wife and family, save for a few, are all behind WHATEVER I want to do. I am just looking for advice and for information, so I can make the right decision here and going forward with my life.
Thank you ALL in advance and thank God for this community!! God Bless you all.
-Eric

have2believe
Posts: 135
Joined: Dec 2010

1) How many of you have WAITED or not done anything or any chemo at least? My mom has already been on two lines of therapy. When there is no disease detected or everything is stable, my mom's doc says that it's time to get off chemo.

2) The THREE drugs they want to do at VANDY for MY chemo are similar to many of you, many I have read here (and I have read almost every post I can find under STOMACH and ESOPHAGUS cancer so far before posting this) except for ONE of them. The ONE I have never seen mentioned is called LEUCOVORIN and also known as FOLINIC ACID (The FOL in my FOLFOX). What is it and why do I not see many others doing this one, although I DO see FOLFOX mentioned?

My mom's second line chemo was FOLFOX...I believe leucovorin does something with the 5-fu. My mom had worse side effects with folfox so the option was to just do 5-fu.

Right, my mom has very little disease left ..just one enlarged node. I believe that with additional chemo, it will disappear, but we are still on break for about 3 months. My mom's sick of chemo and really wants a break. I have a friend who has been off chemo for almost a year. Her situation is similar to mine and yours- mets to distant lymph node, no organs.

Surgery for this is very tricky because once it's in the lymph nodes, its very rare for it to disappear forever, and because of that, the chance for reoccurance is very high. For people who've spread to liver, I know one who has had surgery and is cancer free. I also know of another person who has continuously been on chemo. Check out cantstomachcancer.org

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

have2believe,
THANK YOU so much for the reply. I was starting to think I had posted something wrong!
I really really appreciate your feedback and time!
Eric

have2believe
Posts: 135
Joined: Dec 2010

You can also find some help on cancercompass.com

They also have a discussion board for people affected by stomach cancer. Please have hope. My mom has really had no symptoms from cancer, mostly from the chemo. Very few people know she has cancer aside from close family and friends. She doesn't look "sick" and it was such a shock because she eats loads of veggies and fruits, has a standard Chinese diet, and doesn't smoke or drink.

If you have a good doc, their first concern is managing and staying on top of those side effects. I hope your own research coupled with the doctor's wisdom will help guide you to making the best choices in treatment. There are survivors out there.

canuck1
Posts: 8
Joined: Feb 2009

Hi Eric
I was diagnosed with gastro-esophageal carcinoma 5 years ago and had immediate surgery to remove most of my esophagus and 2/3 of my stomach to reconstruct the remaining into a neo-esophagus. Three months after surgery I started chemo with Leucovorin (this helps to keep the the 5-FU in the cells longer) and Fluorouracil (5-FU). My chemo was 5 consecutive days followed by three weeks off for 5 sessions . I also had radiation for two of the sessions (24 Days). It has been almost 5 years since my surgery and all tests and CT scans have been negative. Going of a CT scan tomorrow and hope it will be negative.
Steve

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Steve,
That's GREAT news. Five years is a milestone. Please, let us know what comes of your scan!
I will be eagerly awaiting your results and will be praying for good news and NED!!!
Thanks also for the response.
-Eric

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