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

Bee bee
Posts: 27
Joined: Jul 2013

Hi, I’ve been a long-time lurker on cancer forums due to my dad's prostate cancer. The forum advice and personal stories really helped me as I was with my dad every step of the way as he tried every treatment possible.  Unfortunately, he passed on May 8th after a long and tough cancer battle.

Now it’s my turn. During my dad’s last few months, I started having blooding bowl movements. I attributed them to a combination of stress, constipation, and hemorrhoids. However, it got worse so I made an appointment with one of my dad’s former doctors, a colorectal surgeon. Good thing I did. At the exam, he pretty much told me right away that it was cancer.  I’m sure many of you can relate to my total shock when he told me. He admitted later that he should probably have been gentler with me but because of my dad’s situation, he did not want me to have any false hopes that the tumor he saw was benign.

So, after all the usual tests, I’m clinically at Stage III (T3, N2a, M0). There are 5 lymph nodes affected. I am optimistic but sometimes it’s tough remembering that when my dad was initially diagnosed, he was also Stage III with lymph node involvement, and then it eventually became terminal.

I’m hoping to start treatment next week- chemo & radiation. I desperately need advice on whether to have Xeloda or 5fu. My oncologist strongly advised against xeloda because he’s seen patients with long-term or permanent side effects from hand foot syndrome and neuropathy versus 5FU. He said because I’m young, that is not something he thinks I would want to live with for many years. However, after doing so much of my own research, I already had my heart set on Xeloda because I am an extremely active person. So, I would love to hear from anyone on long-term side effects. I know that every person is different but I would really appreciate your input. Thanks! 

neons356
Posts: 54
Joined: Dec 2010

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

Trubrit's picture
Trubrit
Posts: 1692
Joined: Jan 2013

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

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lp1964
Posts: 908
Joined: Jun 2013

I don't have any experience with 5Fu (the iv version of Xeloda). Other patients here will help you with that.

I have very recent experience with Xeloda tablets that are of course much more convenient than IV. I had no nausea, diarrhea at all. Make sure you take it with plenty of food and water. In my experience about 1-2 hours after I took it, it really dropped my energy, so I really timed it so that I don't feel the effect. Took the first dose at 6 am with early breakfest And the eveni g those right before bed time. I eat little bites constantly during the day, because that maintains your metabolism on a higher level all day. Took naps when needed, but no longer than 45 minutes. Set the alarm. I carry Immodeum just in case of disrrhea. Keep hydrated all day.

Very important that you start using lotion your hands and feet right now in the morning and in the evening, because Xeloda can cause nasty cracks in your skin that is painful!!!! Wear soft comfortable socks and shoes.

As far as radiation, that was pretty easy too. I used bio oil (from Costco) on a large area after each treatment. I got skin irritation between the butt checks and the doctor gave me an ointment for that. You are a female so you have to be more cautious with the female genitals. Ask female patients here specifically and GO TO THE ANAL CANCER GROUP!!! There are a lot of females there who had radiation and can give you good tips.

That's all my friend.  I'm very sorry for your diagnosis, but you came to a good place here for advise. Confirm everything with the patients here. I found out 8 days into the treatment that my ex-oncologist gave me half the xeloda that I really needed. So just ask and verify!

What size is your tumor and where is it located?

Laz

 

Bee bee
Posts: 27
Joined: Jul 2013

Carl and Laz, Thanks for sharing your experiences and the advice. You both seem to have had fairly mild effects from either the pill or IV so I am hopeful.

Yes, I've been reading the advice specific to women and it's been extremely enlightening. The nurses and doctors really seem to gloss over certain side effects, particularly for young women. The radiation nurse mentioned no gender-specific side effects and the radition doc said at the very end of my appointment, in an off-hand way, that my ovaries wouldn't be viable and I would go into early menopause. Thankfully I had already done my research and was prepared for this, otherwise, it would have been quite a lot to take in.

My tumor is 5cm and it's very low in the rectum. My surgeon already warned me that I will likely have to have a permanent colostomy bag. I'm hopeful that the chemo and radiation will shrink the tumor but I am ready either way. My dad's situation certainly prepared me for pretty much anything.  

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lp1964
Posts: 908
Joined: Jun 2013

Dear Bee,

When I mentioned the female genitalia basically meant the exterior and the vagina. A lot of women in the anal cancer group mention serious side effects there and I'd like you to be prepared for that. It is important that you start your routine before the treatment begins, because once the problems start they accumulate and heal very slowly. 

I hope I'm not too intrusive into your business, but we all want the best possible outcome for you.

I have exactly the same size tumor in the same location. Mine is on the back wall of the rectum, sitting on the tail bone touching the sphincter, so it's very very likely that they can't save the muscle. I'm still looking for a surgeon in the Los Angeles area.

What were you told?

laz

danker
Posts: 769
Joined: Apr 2012

I had fu5 thru a pump during the 5 weeks of radiation.  Diarrhea was the only side effect which  LOMOTIL handled.Lost 2/3 of rectum but was able to be reattached.  NED for last 3 yrs.  Good Luck!!

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z
Posts: 1269
Joined: May 2009

I am from the anal cancer board.  You said its low in the rectum.  I know theres a certain point whereas, if low enough it would then be then considered anal cancer.  Does your dr know the difference between rectal and anal cancer?  Probably, but anal cancer is very rare, so I just wanted to ask.  Lori

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db8ne1
Posts: 92
Joined: Feb 2013

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

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herdizziness
Posts: 3492
Joined: Apr 2010

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

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dorookie
Posts: 1692
Joined: Jul 2007

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

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wawaju04976
Posts: 316
Joined: Dec 2012

Thank you for sharing!

Judy

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Trubrit
Posts: 1692
Joined: Jan 2013

I am so osrry about your dad. Even knowing that death is inevitable, doesn't take the sting away.  

My 'Dad' died before I was diagnosed (old age) and I am so grateful for that. He would have worried himself into his grave had he known. 

I'm one week our of radiation and two weeks out of the 5FU.  My neuropathy increased after the 5fU unhook, and has got no better.

But alas, everyone responds to thier treatments differently.  I could NEVER go to work during my treatments, during the whole eight months of treatments.

I started with surgery,followed byt nine FOLFOX, then 30 sessions of radiaion (which has been the hardest part for me) and five weeks of 24/7 5FU.  

I'm a wreck! But thats justr me. 

Good luck in your decision making. Have faith in your Onc. Keep us posted.

Bee bee
Posts: 27
Joined: Jul 2013

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.  

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annalexandria
Posts: 2320
Joined: Oct 2011

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

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Annabelle41415
Posts: 4399
Joined: Feb 2009

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

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kennyt
Posts: 110
Joined: Jun 2013

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

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

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

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dmj101
Posts: 527
Joined: Nov 2011

BeeBee. you have recieved a lot of information...

First the price of the drugs is based on how well your insurance was negotiated...

Second as a woman... I highly suggest you speak to your gyno... I too had a hemoroid and rectum cancer.. Can I tell you that menapause will be coming either temporary or permanant from the radiation and chemo... also anatomically be prepared for the vagina to dry and shrink from radiation.. I know you aren't thinking about sex right now.. but someday you will be... be prepared....

Third.. Xeloda or 5FU... well to start I would suggest the 5FU...

Fouth... the Nuropathy comes from the Oxycaliplatin thay you will most likely get after surgery in a FolFox protocol... not everyone gets it.. I did towards the end of the treatment and it excellerated 2 weeks folling my final treatment... and almost 2 yrs later I still have it in my feet...  and hand occassionally.

Fifth .. find a doctor you love.. they make the journey much easier...

Good luck as you join the journey to live...

 

Bee bee
Posts: 27
Joined: Jul 2013

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. 

 

kennyt's picture
kennyt
Posts: 110
Joined: Jun 2013

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

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

Always Make sure you take the Xeloda with plenty of food. Eat some, take the pills and eat some more. Then wash it down with liquid. Avoid acidic food and drinks like raw tomato, sour craut, pickled things, orange juice. I did started having mild stomach pain during the second half of my treatment and I kept snacking all day like rice cakes and stuff and that kept it quiet.

Also, take your pills 2 hours before radiation, because that's how long it takes to get to ideal blood level for Xeloda and that's important, because this medication makes the cancer cells more sensitive to radiation.

Hope this helps,

Laz

taraHK
Posts: 1961
Joined: Aug 2003

I am writing after you have made your decision (Xeloda vs 5FU) and I am sure it is the right one for you. I did both (at different times!). They both have their advantages and disadvantages and reactions are very individual. I preferred the Xeloda because it meant a pill instead of a 2-3 day hook-up (in my case, a hospital stay). I had some problems with my feet (wore those 'fit flops' - the ones with sparkles!) but they went away after a few months (the problems, not the shoes ha ha).

I ended up with a permanent colostomy. That was about 10 years ago. Not something you wish on anyone, but really not that bad -- for me. I was 44. Can still swim, hike, "be intimate", wear almost everything I did before (except a bikini -- but at 44..well). 

I went into instant menopause. The vaginal shrinkage/dryness can be very real. I read about various solutions -- pelvic toners, etc (excuse me being so blunt here) but in fact the best advice I got -- and effective -- was to have frequent intercourse with my partner. Painful at first, but effective over time.

I wish you well with all the other decisions you will be making -- 

Tara

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