fibrosis and capcitabine
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Caroline
if you come to England please contact me. I have followed your story and am very impressed by your courage and determination and I would love to meeet you.
All the best to you,
PatriciaDear Jules-
I am on Xeloda (capecitabine) and I have had some diarrhea with it. I have taken Immodium which helps. Also, I’ve read that eating less fiber helps (doing just the opposite of what we normally try to do). My bigger issue with Xeloda is hand-food syndrome which causes my feet to swell and then become painful to walk on. I probably am prone to this as a bookstore owner and sometimes being on my feet from 9am – 10pm. I try not to schedule myself for long days, or try to sit at the counter for part of the day if I do.
My platelets have been low as well as my red blood cells. I’ve read and been told that you can’t really do anything to your diet to help your platelets, so I’ve been talking to them – I told them to get back up there. And today they were up again in the normal range; the last two weeks they were around 75. My oncologist says that aspirin is deadly on platelets and ibuprofen is to some degree, but Tylenol is hard on the liver. So I take Ibuprofen and Tylenol sparingly. This week I got a shot of Araness (sp?) for the first time to help with the red blood cells. I’ve started eating more beef which may also help.
Now I have a question for you. Do you know how to contact the facility in England that is offereing the AZD2171 trial? None of the trials in the US for AZD2171 seem to apply to CC patients, but I think the one in England would (plus I think they’ve opened a ssecond one). The only contact given on clinicaltrials.gov was to send an e-mail to the AstraZeneca website. I have a cousin who is a drug rep for AstraZeneca and she got me the name of someone at MD Anderson and I left a message there today, but I think I’m going to get lost in the shuffle there.
If by some chance, I should get to England for this trial, I want to look you and Patricia up, and possibly Mary, too, whose mother had CC and I think might have passed away by now. Has anyone heard from her?
Glad to hear your trip went well. Was this the trip to Florida? If so, hope you missed the hurricane.
Best wishes to you and your father,
Caroline Stouferhi everyone,
we have been away for the last couple of weeks which was great – now we are back and faced with some decisions.
This am we had a meeting with my Dad’s oncologist. he told us that my Dad’s platelets were too low (50) to continue with gemcitabine and carboplatin. he wants my Dad to have a lumbar puncture this wk – he thinks my Dad could have fibrosis in his bone marrow. Has anyone else had this problem?
He has said that if my Dad wants to continue with chemo that he will have to switch to a drug which will not affect the bone marrow – he is suggesting capcitabine. However he has warned us that capcitabine “targets the gut lining” and it is likely that my Dad could suffer bad diarrhoea with it. has anyone else experienced this problem with capcitabine?
Any info/experiences much appreciated.
Jules
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