newly diagnosed w/ rectal cancer @ 37 y.o, advice needed xeloda v 5FU

I'm so sorry to hear about your dad - and your recent diagnosis. 

I'm Stage 3 too and had 6 weeks of 5FU and daily radiation (5 days per week) prior to surgery.  Carrying the 5FU pump around was a bit of an inconvenience, but not really that big of a deal.  I worked full time through out - I just scheduled my radiation for early mornings and went to work after.  Chemo/rad obliterated the large tumor (T3) and left an "ulcer".  Eradicated the problematic nodes, too.  Had surgery 8 weeks after chemo/rad was completed.  I'm now on the 5th of 10 rounds of FOLFOX.

It is my understanding that your body has to convert the Xeloda to the 5FU.  From some that I have spoken with, it seems the xeloda is harder on your body - more side effects.  That said, everyone reacts differently to every drug. I handled the 5FU much better than the doc's expected (and radiation, too). 

The worst part for me thus far is the FOLFOX.  I started having numerous and severe side effects with Round 1.  By Round 4 they cut the oxi back 25%.  Then, I fell and broke both of my wrists on the 4th of July.  Hopefully, the chemo won't impede the healing process too much - but we will have to wait and see...

Best wishes as you embark on this journey.  I will keep you in my prayers!

Jenni

I never had the 5FU but I did do the Xeloda.  I never experienced cracked fingers or feet,  maybe because I listened to my onc and didn't do anything repetitive with them, steered my steering wheel with my palm and not my fingers, quit weeding (I did try it but noticed a tingling so stopped)and wore gloves when washing dishes, and if tingling started while on computer, quit typing for a little bit, all suggestions he made to me.  I also wore sandals and not socks and shoes as it seemed to make my feet feel better then in shoes.  I still have a little problem with my toes feeling odd but nothing extreme and it's becoming less and less as time goes on.  I was on Xeloda for about a year, Two weeks on two weeks off, 3000 mg a day, 1500 in morning, 1500 in evening.  I didn't have stomach problems with it, Xeloda was easy on me, but everyone is different and you won't know until you try it.  I liked it compared to having to wear a pump and my Onc thought Xeloda would be better for me, he said you don't want to be running around with that pump.  I think neuropathy is just as bad on 5FU (if I'm wrong others will chime in here).  I liked the Xeloda and lack of side effects.  But everyone as I said before reacts differently.  The oxi was harder.

I'm so sorry about your father and your getting this darn disease too!!  Dang it!!!

Winter Marie

dorookie said:

Hello

I two was DX ay 37, but no family history, started as blood in the stool and I too contributed to stress, constipation and hemerroids.  Had a colonoscopy on may 14, told to be concerned, next day got a call at work, being that my doctor new I was in law enforcement he asked me if I was in the field or in the office, I knew it was not good news when he asked that, so he told while i was out having a smoke break. Talk about a buzz kill, went inside told my boss and was driven home and life as I knew changed forever for me. 

 

I had surgery first, that is where they stagEd it as stage III, healed, got a port put in and started Chemo (folfox with oxiplatin' I suck at spelling).  I was so deep in denial I literally was a robot, I remember my GI doctor yelling at me YOU GOT CANCER while in his office, I guess I came off like it was no big deal, ok so I have cancer what do we have to do to get it out and done with so I can get back to work, that was my attitude.  Because I was so young my ONC ( if you happen to be in AZ, I highly recommended him, I believe he saved my life)' hit me hard with the chemo, then had to have six weeks of rads, then another 3 months of chemo, at this time we had to stop the oxi, it was just to much for me, but I made it to like 8 rounds I think.  was declared NED in March of 2008..

it came back to my right lung in Oct 2008, stage four. It hit me hard this time, I begged my ONC not to e make me do the IV Chemo, for me that is my biggest fear and still is to this day, he allowed me to do Xeloda, at max dose of course, did this 14 days on and 7 days off for 7 months, finished my last treatment in june 2009.  And thank God and all my medical team and of course my life partner, this November will be FIVE years since the cancer was taken out of me. Now has these five years been easy %##%* NO but I'm still hear to complain LOL

 

its a new different life, but it's a life!  This board was and is a very big part of how I got through my journey, the best people in the world and in the heaven as we have lost some wonderful people.  I'm so sorry about your dad and so sorry you have to be here but welcome, gosh I didn't mean to ramble on, I haven't told my story in awhile, not sure it helped any just know each story and situation is different and no one and I MEAN no one knows when it's our time, only God or who ever it is you believe in.

 

again Welcome

HUGS

Beth

Thank you for sharing!

Judy

neons356 said:

I had the 5FU

Hi,Bee,

          I was stage III, 8 of 15 nodes positive. Surgery to remove tumor and permanant colostomy, radiation and 5FU/leucovorin. Now this was a long while ago, nearly 20 years to be exact, and I'm not even sure if Xeloda was available back then. But I'm here those 20 years later to tell you that the treatments worked. The first couple of months were very hard on me -mostly extreme fatigue, total loss of energy, nausea, no apetite, and some neuropathy but that went away relatively quickly. For the nausea and lack of apetite I smoked maryjane which completely eliminated those symptoms. I also had surgical problems but won't get into that. So that's my riff on 5FU. It worked for me. I'm sure others will comment. Sorry that you have to be on this new venture. best of success,

Carl

20 years, 20 years, 20 years.  I'll take that please.  May we all have such good news. Congratulations!

Sorry for your diagnosis.  I've had both.  The Xeloda before surgery and the 5FU after.  Being on the run is ok and wanting to take just the pill, but my oncologist explained to me that the IV is more effective.  I'm glad that you have found us and hope that you seek us out for further questions.  I'm so sorry that you are so young at this also, and sorry about your dad's passing.  5FU with oxy can be very damaging also becaus of neuropathy so please talk to your doctor if you are having oxy because that can be causing many problems also.

Kim

kennyt said:

zeloda

My oncologist from Stanford prescribed the zeloda pill without an option so she must have faith in it. but it is more expensive 2900.00 for a two week supply. make sure you go to the avastin website and get the copay card for zeloda I only paid 100.00 instead of the 2900.00

I paid $6 for the entire treatment of Xeloda. I was surprized that poison was so cheap.

So the range is $6-$2900. Makes me sick that purhaps they make some patients pay the upper limit.

Laz

Bee bee said:

Thanks everyone for your

Thanks everyone for your advice and condolences. Trubrit, I too am glad my dad passed before my diagnosis as I'm sure he would have been heartbroken if he'd known.

Beth, I read an old post of yours (back from 2010) that you experienced h/f syndrome from the Xeloda pills. Has it gone away since then? I ask because I'm not as concerned about short-term side effects but more the long-term or permanent effects the oncologist was warning me about.

Laz, my tumor sounds just like yours- back side, near the sphincter. I'm in the OC, work in LA, so I am quite familiar with Cedars Sinai. My dad was treated at Hoag in Newport Beach so most of the docs & nurses already know me so I'm sticking with Hoag. My surgeon, or at least I'm pretty sure I will go with him for now, is Dr. Daniel Ng. I read a previous posting (not sure if it was on this forum or another cancer forum) of a woman also 37 with rectal cancer who was successfully operated by Dr. Ng. She was pleased with her results but I don't know any other specifics. Dr. Ng knows how much I don't want a colostomy bag and because i'm young and active he said he will do everything possible to save my sphincter. He does robotic surgery at Hoag.

WM and jenni, thanks for the input. This helps me alot as the more I read, I am leaning toward the Xeloda pill.  I will also have to undergo FOLOFOX after surgery because I'm stage III and the onc and most of your experiences confirm that oxi is notorious for neuropathy anyway.  

as you can no doubt tell already, we're a pretty friendly bunch around here, and will help with information whenever we can.  The only thing that I wanted to add was that my clinic had its patients take glutamine powder when doing any treatment that had neuropathy as a side effect.  It's a protein powder that you can buy in a vitamin store.  Kind of sludgy, but it's supposed to help mitigate this side effect quite a bit.  If you do FOLFOX, you might want to talk to your doc about adding the powder while having treatment.

And I'm sorry you have to face this after losing your dad.  My sister died of cancer four years before I got diagnosed.  Telling my mom that she might lose another daughter to this crap was pretty devastating.  I was glad that my dad has already passed away at that point...don't think he could have handled any more pain.

Keep us posted.  We'll be thinking of you...Ann Alexandria

Bee bee said:

Along with all your helpful

Along with all your helpful input, I was also able to contact my dad's oncologist who is sort of a family friend and he said that if it were him, he would take the Xeloda Pills. He gave me some other interesting insights that I won't elaborate on unless people want to know. I also found that my surgeon wouldn't be able to put in the port until this Fri. which would delay treatment that I was ready to start a week ago! 

So, I made my decision and just started treatment yesterday. $100 copay for Xeloda. Although it seems high compared to others, I can't imagine how much i would have to pay for infusion and port because I have PPO where i'm responsible for 20% Of the bill.

i already have a stomach ache and headache today. I'm crossing my fingers hoping it doesn't get too bad but I know I'm still very early in treatment. 

Thanks for all your well wishes. 

 

I'm starting tomorrow with oxy/avastin and zeloda pills we can compare notes. why doe's your onc prefer the pills?