July 20, 2017 at 6:21 am #95009
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,
XoJuly 19, 2017 at 11:48 pm #95008
Fay…..your Mom is doing fantastic, couldn’t be more thrilled to read your posting. Physicians are people, some have good manners whereas others do not. Try to not take it to heart, the fact your Mom is doing well only attests to the fact that this disease can be treated. Who knows what will happen next year or the time to come? For all we know, your Mom will be dancing.
MarionJuly 19, 2017 at 3:00 pm #95007
I think most of us have had similar experiences of negativity and poor communication from doctors. I understand they must be honest and upfront, but at the same time the harshness of how some communicate can be controlled. I don’t even want to list some of what I have heard over the course of the last year. It’s not psychologically good for the patient either as it makes them feel worse when they are already confronted with bad news. It may be lack of regard or training on how to communicate with patients when circumstances are not good, but at the same time give some encouragement or hope.
I am glad your mom is doing well, and try something to uplift her mood.July 19, 2017 at 10:02 am #95006middlesister1Moderator
So sorry you had to run listen to a jerk face, but so very excited to hear how well your Mom is doing. My mother was also told many negative things ( no need for mammogram- this will kill you sooner). However, she almost 4 years since diagnosis and they have her back to annual mammograms, dentist visits, and taking vitamins. I hope you get the opportunity years from now to tell the provider he was wrong.
CatherineJuly 19, 2017 at 7:01 am #95005
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,
P.S. Dose of capecitabine is lower for this indication, when used concurrently with radiation. That is why it is tolerated better.July 18, 2017 at 7:50 pm #95004
positivity….have you tried the “search” function by entering Cryosurgery? It’s been around for quite some time and has been used for CCA treatment as well.
MarionJuly 18, 2017 at 6:29 pm #95003katrinaParticipant
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.May 25, 2017 at 5:09 pm #95002
No, I have not looked into it.
I am currently reading about freezing cells in a procedure called Cryosurgery. I don’t think our forum has a lot of information on this procedure, and how it can be useful for CC.
Eventually I want treatment for CC to expand and have more choices.May 24, 2017 at 6:06 pm #95001
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.
MarionMay 24, 2017 at 5:58 am #95000
My mom has a recurrence (less than six months post resection) and its extensive. The medical and radiation oncologists are planning a five week course of capecitabine and radiation, five days a week. She will start soon. I hope we have a positive outcome. Just sharing our story with you.
P.S. I’m currently also reading about hyperthermia treatment which is typically done at a naturopathic clinic. Apparently it increases the efficacy of chemo and radiation when it’s done concurrently with conventional treatment. But regardless, I will still ask our oncologists for their opinion/input. Does anyone have any experience with hyperthermia treatment?May 22, 2017 at 4:38 pm #94999
Thanks so much for sharing your detailed experiences Cathy and Mary!
Once oncologist suggested Xeloda and stereotactic radiation to my mom, but we decided not to use it. I don’t know if that decision will change in the future. At the time she was too unhealthy and weak to undergo that treatment. It is wonderful that it has helped patients with no spreading of the disease.May 19, 2017 at 10:17 pm #94998jathy1125Participant
Mary, I have been on XELODA for almost a year. I was 61/2 years cancer free due to transplants, but it came back in my ureter. Treatment this time around was very hard with many life threating times, I basically flunked out of all standard chemo programs. My doctor and I discussed quality or quanity of life and decided to stop treatment. I did my scans 3 months later only to find out it had spread to stomach and pelvic. I then went on XELODA, I still had problems but more do stent in ureter and never had a constant chemo schedule. I developed hand/foot syndrome very badly (needed wheelchair) so we reduced dose and that helped. I finally just did 2 months consecutively of chemo and am taking a break due to more chemo symptons, but only a week! Doctor said if side effects continue, we can still lower dose. In conclusion after almost a year and minimal problems, there has been no mets and my year and half is now 21 months.
There is HOPE
CathyMay 19, 2017 at 8:09 pm #94997bglassModerator
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, MaryMay 19, 2017 at 7:51 pm #94996
Xeloda, an oral agent, is very similar to 5-FU, a chemo drug given intravenously has been used for this cancer and other cancers for many years.
Most common side effects are redness, tenderness, and possibly peeling of the palms and soles. The redness looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. The use of moisturizing balm and gloves help elevate this syndrome.
There are other side effects as well, but we hear less of those.
Just recently Gavin and I reported on the outcome of the BILCAP study which showed the subgroup of resected patients treated with Xeloda experienced a higher life expectancy than those untreated.
Xeloda is mentioned hundreds (if not more times) in medical literature and on this site.
Hoping for the rest of the community to share his/her experience with this drug. In the meantime you may want to use the search function to read up on previous postIings.
MarionMay 19, 2017 at 6:10 pm #13373
Even though the article emphasizes this rare cancer, it seems like it is becoming more common. The treatments should expand, as the article states there is limited research. That is the reason we are here on the forum, to make this more common. Has anyone tried Xeloda? Was it useful?
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