Folfox or Xeloda

[shel28]

Did anyone choose to do 5 FU and leucovorin or xeloda versus the Folfox regimen? I am concerned about oxaliplatin causing liver toxicity and neuropathy, which I hear can last up to 4 years after treatment. I had stage III rectal cancer with 3 lymph nodes affected (through ultrasound-did not show up in the Pet) and did chemoradiation. Most colon cancer people don't do radiaton so I feel like I had extra treatment that colon cancer people don't have so I don't need to do as agressive of a chemo. Anyone else feel that way? The radiation and chemo also completely killed my tumor and cleared my lymph nodes to the point that the pathology at surgery was Stage O (this is called downstaging) so I don't feel high risk anymore and my oncologists are very optimistic. Has anyone else gone through this?

[cmindc]

I am 34 and was diagnosed with Stage 2.5 (my oncologist's words) Rectal cancer on 12/22/06. I had 30 radiation treatments and took Xeloda at that time. I also had 5 treatments of Oxaliplatin. All that treatment finished up in early March. I had a perineal resection with a permanent colostomy on 4/23. And then I started Folfox in late May. I just got disconnected from treatment #3 yesterday.

I was taking Xeloda and getting the Oxaliplatin during the winter and I had major sensitivity to the cold. My face would freeze when I was outside. I found that with being on the Xeloda daily and getting the Ox for five Fridays in a row, I had all the symptoms - nueropathy, first bit syndrome, sensitivity to cold and hot, glass in the mouth feeling when drinking cold drinks - all the time. I basically had all this for a month and a half. It took about 3 weeks for it to go away when I finished treatment.

I've found with the Folfox routine that the symptoms only last for about 5 days. I go in on Tuesdays and get the Ox and Leuv and then leave with a pump and meds and get the 5FU for 46 hours. So, I get disconnected on Thursdays. I've found that by Monday or Tuesday I can drink a Slurpee (I love those!!) and I have no glass in the mouth or anything and I feel good. Schlepping the pump and the bag around is a bit of a pain, but I like only having the side effects for a couple days as opposed to constantly. I've only had mild neuropathy this time around. My fingers get a little tingly at times and picking up something cold is tricky. but it gets better after a couple days.

Hope that helps! Let me know if you have any questions.

[Joy]

Michelle:

I was diagnosed with stage III rectal 2 lymph nodes positive. I had 8 rounds of Folfox + 28 radiation with 5FU. This was done post op.

I didn't have radiation prior to surgery. My cancer was a "sneaky pete" and originally showed pathology as "benign".

I was 59 at diagnosis, have 3 really sweet grandkids and had just started retirement. I went Folfox because I didn't want to have the "what if", "I should have"........I wanted to do everything possible to "survive".

I still have neuropathy in my feet. which is very slowly getting better I was fully aware of the possibility that I would suffer neuropathy but I weighed this risk against the final outcome.

Would I do it again, you bet yah it was be best decision for me!!!

In saying this I don't want to influence your decicision - you have to take the treatment which you feel would be best for you.

NED October 2006
Retired - winter in Naples Florida
summer at the Lake in Canada with the Grandkids

[missjv]

hi,
well i would stick with the most aggressive of treatments you can get and tolerate. im glad you don't feel high risk but in reality you are high risk especially with positive lymphnodes even though they may have been clear at time of surgery it does not mean other lymphnodes were not infected but have not shown yet. alot of colon cancer is sneaky and slow growing and alot of people diagnosed stage 3 often end up stage 4 even a few years down the road. i don't mean to sound negative and make you feel bad but do all you can, be very aggressive. i was diagnosed stage 4 june 06. i went through liver resection, 10 months of chemo and today feel just wonderful and am classified now as ned even though in reality i know this crap can come back. it is hard when you feel so good knowing this crap is lurking around in your body and can rear it's ugly head when it wants. im glad you feel good and you sound like a very positive person and that is a big plus but don't let it fool you do all you can. good luck!

missjv

[sean]

One thing to consider is that chemo is used to prevent a recurrence and recurrences are usually somewhere else than the primary tumor - usually with cc it is the liver or lungs. My understanding is that when someone gets a recurrence after having a primary tumor is that it was there all along but too small to detect. The question to ask your oncologist is did the treatment you had reduce your chances of recurrence or did it just take care of the primary tumor and the secondary sites (lymph nodes). I would be concerned that the fact that the cancer was found in the lymph nodes indicates it spread and that that puts you at a higher risk that it spread elsewhere. I would definitely ask a lot of questions and maybe get a second opinion. I do know that studies confirm that FOLFOX shows real benefits to stage III patients - I just have no idea what "chemoradiation" or downstaging does to change outcome or risk of recurrence. The best thing you can do is find out as much as you can about your risks. Chemo hasn't been a walk in the park for me nor has it been awful (although there are bad days). I don't regret for a second the decision I made to do it because I want to be as aggressive as I can in preventing a recurrence. It can put your life on hold and will likely interfere with work and leisure - so it is not an easy decision. Good luck no matter what you decide.

[Frank G]

I am Stage IV with mets to liver.I started on Oct 1,2006 with treatment.I took Oxiliplatin and Avastin by intraveinous for 4 hours every 3 weeks.This was complimeted by Xeloda pills 2 times a day for 2 weeks.Then one week off and start over.

The first 3 treatments reduced cancer activity by 90%. I took 3 more and moved to just Avastin and Xeloda for 3 treatments.I had no tumor growth but a slight uptick in activity and have had Oxi added back in a smaller dose for 2 treatments.

The Neuropothy has been ok but it is there.The reduced dose has taken away the first 4 or 5 day sensitivity to cold drinks.The Dr. can give you Neuronton if the long term neuropothy gets to uncomfortable.It controls the symtoms well.

I prefer the convience of Xelod pills to the Folfox pump.Studies show it works just as well.

[sue]

missjv, what chemo did you do? and for how long? Thx, Sue

hi,
well i would stick with the most aggressive of treatments you can get and tolerate. im glad you don't feel high risk but in reality you are high risk especially with positive lymphnodes even though they may have been clear at time of surgery it does not mean other lymphnodes were not infected but have not shown yet. alot of colon cancer is sneaky and slow growing and alot of people diagnosed stage 3 often end up stage 4 even a few years down the road. i don't mean to sound negative and make you feel bad but do all you can, be very aggressive. i was diagnosed stage 4 june 06. i went through liver resection, 10 months of chemo and today feel just wonderful and am classified now as ned even though in reality i know this crap can come back. it is hard when you feel so good knowing this crap is lurking around in your body and can rear it's ugly head when it wants. im glad you feel good and you sound like a very positive person and that is a big plus but don't let it fool you do all you can. good luck!

missjv

[missjv]

HI SUE,
WELL PRE SURGERY I DID FOLFOX WITH AVASTIN 8 ROUNDS. POST LIVER RESECTION I DID 12 ROUNDS OF 5FU/CPT11 AND I ALSO HAD 6 TREATMENTS TO MY LIVER PUMP. IT HAS BEEN A LONG YEAR BUT NOW I FEEL GOOD AND MY SCANS HAVE BEEN CLEAR SO FAR SO IM HOPING THEY STAY THAT WAY. MY PRIMARY WAS A CANCEROUS COLON POLYP THE SIZE OF A PEA THAT CAUSED ALL THIS TROUBLE. I GO FOR ANOTHER COLONOSCOPY SOON I HOOPE IT IS CLEAR, I HAD FLEX SIG DONE BEFORE SURGERY AND THAT WAS CLEAR AND THATS WHERE THE PESKY LITTLE POLYP GREW IN THE SIGMOID AREA THE REST OF COLON WAS FINE ON LAST COLONOSCOPY. I HAD 2 MORE POLYPS BUT BOTH WERE NON CANCEROUS.


MISSJV

[PammySue_51]

I just finished FOLFOX6 with Avastin and leucovorin. I am stage IV with 2 tumors in my liver. The tumors shrunk significantly on this cocktail (from 3.7 cm to 1.4 cm, the largest one). Now I am on Xeloda 1000 mg a.m. and 1500 mg p.m. I am 8 out 14 days into my first treatment of Xeloda and then I will get a break for a week. So far, so good. I have not had near as many side effects. Neuropathy -- yes, but it's more annoying than anything and I had it before I started Xeloda. My advice would be to take the most aggressive treatment you can handle physically. I would rather have minor neuropathy and extend my life (hopefully by a long time). Good luck whatever you decide to do.

Pam

I Peter 5:10