Topic: Update on Jeff - Info on Xeloda, possible 2nd opinion

Thanks for the warm welcome into the CC family. We are amazed by the courage and resourcefulness of this group.

Jeff's doctors have said no to surgery for now. We are starting on a regime of chemo for 3 months and will then revisit the surgery possibility, if the tumors in Jeff's lung and liver have shrunk or stopped growing.

He is on Xeloda 500mg tablets - 3 pills two times a day. He will take these pills for 14 days and then be off for 7 days. He will also have another medication by IV drip that will start next week (I don't know what the name is yet). I will write a new post when I find this out.

Does any one have experience with Xeloda? Did it work? Actual side effects?

We are very happy with our doctors at UCLA. However, we are considering a 2nd opinion at USC. Does anyone have experience with the doctors at USC in the treatment of CC? Who would you recommend for a 2nd opinion at USC? Anyone else at another facility?

Thank you,
Bob & Nancy (Jeff's Mom & Dad)

Re: Update on Jeff - Info on Xeloda, possible 2nd opinion

Bob and Nancy....thanks for staying in touch.  I assume that Jeff will be treated with Gemzar (infusion) in addition to Xeloda.  Xeloda is somewhat the same as 5-FU (infusion) but comes in a pill form. It is a chemo drug widely used for treatment of this cancer and is generally well tolerated. 
One of the most mentioned side effects of Xeloda is the hand-and-foot syndrome.  In order to avoid cracking of the skin, moisturizing balms or heavy lotions will help. 

In regards to obtaining a second opinion, USC is a great choice.  Several of our members are treated by Dr. Heinz Lenz or by Dr. Anthony B. El-Khoueiry.  Both physicians have vast experience with this disease.  For a second opinion in regards to possible surgery, you might want to consult with Robert R. Selby, MD.

These are my suggestions only.  I am hoping for others to come forward and share their thoughts with you also.  In the meantime you might want to take a look at the member established listing.  Please know that it is lengthy and that it encompasses names of physicians throughout the US and abroad, nevertheless it is quite informative and expresses personal experiences. 
http://www.cholangiocarcinoma.org/punbb … hp?id=3126
Good luck and please keep us posted.  Others will come around real soon.
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

Re: Update on Jeff - Info on Xeloda, possible 2nd opinion

Hi Bob and Nancy,

My daughter, Lauren age 26 has CC. She was diagnosed Aug. 2011. She is on a chemo regime right now of Xeloda and an iv infusion of Oxaliplatin. She started out on 3-500mg. tablets in the morning and 4-500 mg. tablets in the evening. She experienced sore, red peeling feet toward the end of each 14 day treatment. Her doctor lowered her dose to 3 in the morning and 3 in the evening and also added iv's of magnesium and calcium and she has not had the symptoms anymore. She is tired during the 14 days, but doesn't let it stop her from getting out and doing things. Previously, Lauren was on 5-FU and some other chemos. 5-FU, the equivalent to Xeloda was much easier on Lauren than Xeloda is. The reason she is on Xeloda instead is that her doctor wanted her on a 3 week cycle rather than a 2 week cycle, thinking that might be easier on her. I don't think it is easier, but it is nice to only have to make the 3 1/2 hour trip every 3 weeks instead of two. She has had tumor shrinkage on this chemo and does not have any more liver pain, so she is pretty happy. I hope Jeff has an easy time with this. I would be happy to answer any other questions you may have. God bless you all and best of luck to you.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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.

Re: Update on Jeff - Info on Xeloda, possible 2nd opinion

Bob and Nancy-I also took XELODA for 5 months while wating for my transplant, I don't exactly remember the miligrams but I do remember 8 pills twice daily. I had no major side effects, I was tired but not "stay in your bed tired". I also had finished IV chemo, radiation, and 5FU pump chemo, so there were a lot of reasons to be tired!! I am sure Kris will speak up soon, because she has managed to get every side effects possible!!.
I was so blessed to not have needed a second opinion, but being a caretaker for my mom for 14 years, I know how a second opinion saved her life twice!! I have always felt a second opinion only validates your first opinion or opens new doors, it is a win-win situation.
Lots of prayers-Cathy

Re: Update on Jeff - Info on Xeloda, possible 2nd opinion

Hi Bob and Nancy:

As Marion mentions, Gemzar is commonly used in combination with Xeloda for this cancer, so this may be what Dr. Sadheghi plans for Jeff. I have done quite well on this therapy with only very minor side effects.

I am very glad to hear that UCLA is still considering surgery in the future. That seems like a good sign. For a second opinion, I can personally affirm Marion's recommendation. USC would be the other major medical center in the LA area that has great experience and expertise with this cancer. After I was put on palliative care, I went to USC for a second opinion. Dr. Rick Selby performed two extensive surgeries, and then referred me to Dr. Lenz for adjuvant therapy (since I had metastatic disease). I am currently tumor free. In short, with this complicated cancer, every case is unique and I think a second opinion is always a good idea.

It sounds like you are doing the very best things for Jeff, and I wish you all the best as you go through this challenging time.

Mark

Re: Update on Jeff - Info on Xeloda, possible 2nd opinion

Hi, Bob and Nancy
My husband was 1 month and a half on Xeloda and couldn't handle it. He was getting very strong cramps in his stomach and since those are pills, he was keep reducing his dose. It is convenient to have chemo as a pill, but it also gives patient control on to take or not to take it and for us it didn't work out. It seems that this drug in IV form (5FU) had less side effect for him, at least initially.
But everybody has different experience with it, so hopefully yours would be better! Good luck!
Alla

Re: Update on Jeff - Info on Xeloda, possible 2nd opinion

Mark...it is nice to see you visiting our site more often. Considering the background of your experience with this disease, you have quite a story to tell.  How is your wife, your devoted advocate? 
Hugs to both of you,
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

Re: Update on Jeff - Info on Xeloda, possible 2nd opinion

Thanks for the note Marion. My wife, Jeannemarie, is wonderful of course...the woman that single handed got me from palliative care at UCLA to surgery at USC via a referral from the University of Pittsburgh. Now that's advocacy!

Best, Mark and Jeannemarie

Re: Update on Jeff - Info on Xeloda, possible 2nd opinion

Special Thank you to Marion, Cathy, Alla, Pam & Lauren and Mark & Jeannemarie for your responses and information. Cyberspace Group Hug. God Bless you all.
Bob & Nancy (Jeff's Mom & Dad)

Re: Update on Jeff - Info on Xeloda, possible 2nd opinion

I'm on xeloda too. I find myself sleepy while on it. This round I have had some vomiting, and that isn't normal for me.
I have been doing chemo for almost a year, and hanging in there. Some days are hard, some are easy. Just hang in there, it can be a crazy ride.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013