• From: St Albans, United Kingdom
  • Registered: Mon, 02 Apr 2012
  • Posts: 9

Topic: Any experience with xeloda?

Hello. I posted here many months ago when my mom got her diagnosis in April of stage IV gallbladder/bile duct cancer. She had four months of gem/cis from july-October, which initially seemed effective but then a new mass appeared and the oncologist said this was a sign that the cancer had developed resistance to the chemo regimen. That is just as well as the tollof the chemo was really starting to show on her, and as far as I was concerned we had reached a stage of the medicine being worse than the disease (in the context of the disease being incurable).  her prognosis is now 4-7 months.
The doc said she wanted to switch to a new chemo medication, one called xeloda, which she can take in pill form (2 weeks on 1 week off).
Has anyone had any experience with it? And specifically, given the dire prognosis, should we be questioning whether to bother at all? Are there any statistics associated with this, like it's effective in x% of patients, while y% experience serious side effects? I know that's a tall order, but I am troubled that the doc just pushed this as the next thing to do, without positioning the alternative very much. My mother is just so whacked from the gem/cis, and it's not like all this is going to cure her, so what is the point of buyng time, if that time is spent in misery??

Apologies for the blather...!
Dina

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,222

Re: Any experience with xeloda?

Dear Dina, I am so sorry to read about your Mom's latest dip on our roller coaster. I can't help with chemo questions but I can tell you what my husband decided at that point. After 5 years of surgeries and treatments when the CC again returned, the ONC offered, key word here was offered, Palliative chemo. He gave Teddy 5 months and Teddy asked him, "How much more time will that buy me". The ONC said a month. After 2 days of considering Teddy opted for no chemo as he wanted quantity over quality. While no one really knows any time limits, the ONC was spot on. If you go to our search button at the top of the page and type in Xeloda you will get many posts on the subject. I know you will be hearing from other on this subject as well. Sending you the very best and please know that any decision Mom makes is the right one. Be Strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 Reply by PCL1029 (edited by PCL1029 Mon, 19 Nov 2012 16:22:02)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: Any experience with xeloda?

Hi,

Please read the link, the first drug is Xeloda.

http://www.cholangiocarcinoma.org/punbb … hp?id=7843

If you like you can read the rest.
I am a patient on Xeloda for 11 months now with only few problems  like   diarrhea at the beginning ,  fatique which is manageable and the brown rings below my nail ofmy big toes.( due to accumulation of the drug, I think, but don't cause me and problem.)
Xeloda, for some unknown reasons is more effective on gallbladder and extra bile duct CCA then the intrahepatic CCA l have.
It is taken twice a day with or after a meal.
If you have side effects like the Hand and foot neuropathy problem, or diarrhea more than four times daily,just as the doctor to reduce the dose for you.
Each patient response to drug differently due the the difference in the risk factors like the current health status of the patient, the other co-exist health issue,the will power of the patient toward having cancer. In general Xeloda is well tolerated and side effect are not as severe as other chemotherapy agent.
In a much boarder sense , CCA mainly is caused by inflammation of the bile duct cells . If we can decrease that process, we will have a good chance to prolong our lives. Eat lots of  vegetable and fruits  of different colors thru juicing; eat protein like soy and all kinds of nut and beans; avoid beef (red meat) and carbohydrate  Like bread and rice, whole grain cereal is fine . In doing so, I think it will help you more along with taking Xeloda- a drug that is now favored by a lot of oncologists due to  easy patient compliance ( oral meds patient can take at home) and its effectiveness is on par with the most commonly use chemotherapy agent for CCA call 5 FU. I think the doctor is thoughtful in choosing this agent for your mom.
God bless.


diarrhea

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,489

Re: Any experience with xeloda?

Hi Dina,

I am sorry to hear about your Mom. My daughter is the one with cancer. I can only tell you about her experience with Xeloda. Every cycle of Xeloda she is on seems different from the last. Sometimes she gets sore, red soles of her feet, sometimes not. Sometimes she feels nauseous, sometimes not. Sometimes she is super tired and sometimes not. What I am trying to say is that there is no set side effect with her on this chemo. It is always different. She is on it right now and is experiencing extreme fatigue. Every time she sits down, she falls asleep. In the past, she has been on Gemzar, Cisplatin, 5-FU, and Oxaliplatin all at different times, some together. She didn't have any problems with them except for low platelets with Cisplatin and an allergic reaction with Oxaliplatin on the 6th infusion. I don't know the percentage of effectiveness of Xeloda for this cancer. If you google Xeloda you can probably get the % of side effects. No chemo is easy to take. It is just something we try in hopes of shrinkage and feeling better. I think the decision is your Mom's. She will know if she wants to keep trying chemo or if she doesn't. I wish her all the best and you as well. Please let us know how she is doing.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: Alabama
  • Registered: Thu, 15 Dec 2011
  • Posts: 365

Re: Any experience with xeloda?

Xeloda has worked really well for me. I'm still on it, but have also added another chemo to the mix.
My side effects were only being tired. I did one week on and one week off.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (7) and Madison (4)
http://tiffanyschwantes.wordpress.com/
I balance my life with my breath.

tiff1496's Website

  • From: Alabama
  • Registered: Thu, 08 Nov 2012
  • Posts: 12

Re: Any experience with xeloda?

Hi,
I have a question about chemo. I am seeing an oncologist on Monday for a 2nd opinion regarding adjuvant chemo. I had a resection in June with removal of ducts, 60% liver and gallbladder, clean margins and no lymph nodes involved. The first oncologist has little experience with CC, and he reccommends Gemzar with Xyloda and a second opinion.
I am wondering what chemo would be actually doing if there is no cancer present at this time. I'd appreciate any opinions so that after I get my 2nd opinion I can make a decision. Thanks!

  • eli
  • eli
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  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
  • Posts: 562

Re: Any experience with xeloda?

CC has a high relapse rate (or recurrence rate) after surgery. In plain English, it comes back in many resected patients.

This fact suggests that many resected patients have remaining cancer cells in the system. The goal of the adjuvant chemo is to try and kill these remaining cancer cells.

8 Reply by PCL1029 (edited by PCL1029 Sun, 25 Nov 2012 23:32:28)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: Any experience with xeloda?

Hi,Laura,
I am not a doctor, but based on what I can understand your hilar CCA situation,,GEMCAP( gemzer+Xeloda)  is a pretty good suggestion; less side effects than gem/cis and the response rate of the regimen is on par with other regimens.GEMOX( gemzer+oxaliplatin) will be another choice, but side effect may be more pronounced than GEMCAP . GEMZAR alone is also acceptable,so just see what the doctor will suggest to you.

http://www.cholangiocarcinoma.org/punbb … hp?id=7843

I totally agree with Eli, in addition,even if  you complete the 6 month adjuvant chemotherapy; it does not mean that  you are completely" cancer free",since the liver is the only organ that can regenerate itself, therefore, both good and bad liver cells can be reproduced overtime. Thus, if you only have one cancer cell left after the adjuvant chemotherapy in the liver, that cancer cell will regenerate and become a tumor again if your body immune system is not strong enough to keep it at bay. That is why recurrence is high(50-75%) . And that is  why cholangiocarcinoma is a difficult disease to treat due to the unique pathology and biology.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Any experience with xeloda?

Laura...I would also like to add that the majority of oncologists (7 of 10) will recommend some type of adjuvant chemotherapy.  Having said that there is no clinical evidence to date proven it to be beneficial. We will have to await the outcome of the clinical trials underway of which most will release the data by the end of next year or the beginning of 2014. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER