Latest Report on Chemo Treatment Xeloda

Dear CC Family,

Thank you for all your comments. I emailed the physician yesterday and asked her to be a bit more mindful of her choice of words, and the patient’s overall illness experience. I was upset because I know my mom has finally turned a corner so to have someone take hope away from her like that, was really upsetting.

We’ve been working on getting her mood up again for the last 24 hours. I don’t want those unnecessary comments to take away my mom’s happiness and joy…….if anyone has any questions about my mom’s capecitabine and radiation treatment, please ask us. We want to help you or your loved ones by sharing our experiences with you.

Sending much love to all of you,
Fay
Xo

Dear CC family,

First of all, I am sorry I have been away for a while but things have been busy with my mom. She just finished a five week course of capecitabine (aka xeloda) with concurrent radiation. Capecitabine is a prodrug of fluorouracil. She was on this regimen five days a week and had the weekends off. She tends to be quite side effect prone but tolerated the regimen very well. Yes she did moisture her hands, feet and abdominal area twice a day. The capecitabine is meant to sensitive the cancer cells to the effects of radiation. So it’s really a synergistic effect. She went from requiring long acting pain meds plus break through every one to two hours, to not requiring any break through at all since the end of June. Her last day of treatment was on July 12th. It has been amazing. We are now titrating down her long acting oxycodone. She feels great.

Everything was going well until one of her providers was kind enough to destroy her mood with negative talk….basically telling her not to get too excited because it will come back and she may be gone in a year….upsetting and hurtful to say the least. Talk about destroying and taking away whatever hope a patient has. So unnecessary and disheartening.

If you have any questions about the drug itself, please let me know. I have a lot of PharmD friends that work at the cancer agency in Seattle and I am happy to pass on your questions. I have missed you so much.

I love you all,
Fay
P.S. Dose of capecitabine is lower for this indication, when used concurrently with radiation. That is why it is tolerated better.

An update about Xeloda (Capcitabine). This study found that Xeloda could offer extended time.

I have used it in a treatment before surgery and after. It did put it on hold for me.

https://medlineplus.gov/news/fullstory_165704.html

Fay……here is a bit more information about hyperthermia. I don’t recall anyone on this site cured with this type of treatment, but some have tried it.
http://www.gorter-model.org/hyperthermia/

Hugs
Marion

Dear Tia,

I agree with you that capecitabine seems a little overlooked. The BILCAP study results will likely change this.

I took capecitabine as part of an adjuvant therapy after a liver resection. At the time one of my doctors asked the question “why not gem-cis rather than gem-cap?” since gem-cis is considered the standard of care as a first-line chemotherapy. But the study behind the protocol I was given pre-dated the big gem-cis trial, and included capecitabine not cisplatin, administered with gemcitabine.

At the time I tried to read what I could find, which was a few small-sample studies. What struck me (this is a completely non-expert patient observation) was that the regimes that included capecitabine often had overall survival rates slightly longer than other chemo combinations. (As a patient, I tend to read past other end-point measures to look for overall survival.) By slightly longer, I mean by a month or two. Also capecitabine is in pill form, which is easier than a cisplatin transfusion. The adverse effects seemed less scary to me with capecitabine when compared to the platinums, although I had pretty bad hand-foot syndrome by the end (my experience, not everyone experiences this.). So I was fine with having gem-cap rather than gem-cis.

I do not believe there have been any randomized studies yet directly comparing gem-cis with a capecitabine combination. The famous gem-cis study (also from U.K.) compared that combination to gem alone. Great Britain seems to me to have an advantage for medical research in that its care system is centralized. So for years apparently, CCA patients there who had liver resection surgery, if appropriate candidates, were encouraged to consider participation in BILCAP. This helped the study to recruit relatively large numbers of patients with this rare disease, and to produce results with statistical weight.

I have been reading this board for nearly two years now and do not recall seeing many or any U.S. patients reporting having BILCAP-type adjuvant treatment, namely eight cycles of capecitabine.

Regards, Mary