Waiting to exhale
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Dear Leslie –
Welcome to the best family no one wants to be a part of. I am with Kris….breathe. You have come to the right place for assistance and support. I do not know much about trials since my husband has not needed to go that route yet but you will find plenty of people who are going to be helpful.
One thing to remember that this is such a rare disease that there is no “set” treatment for it….there are trends such a Gem and Cis or Ox. There are different radiation that can be used. And lots of other things that are being use. You may want to look at a second or third opinion. Sometimes what one doctor doesn’t do, another will be willing to do.
Keep us posted and hopefully you will get your answers.KrisV
Dear Leslie, welcome to our extraordinary family but sorry you had to come here. I am not that savvy on Trial but found this site you might try for some of your answers. http://www.cholangiocarcinoma.org/clinicaltrials.htm
You have come to the right place here for support and advice. It is always good to research, read and be one step ahead as knowledge is our most powerful tool for fighting CC. Wishing you the very best and please keep us informed on your husband’s progress as we all truly care.Leslie,
I am sorry to have to welcome you to our family. But you will never find a more caring group of people.
First off… BREATHE!! I remember my first few months were hectic, and I didn’t even start chemo. But I had a type of surgery, so I know how much goes on the first few months.
I don’t know much, but can say each facility should be able to help you with questions. I know the trial I am on you have to go to Fox Chase. They pay for blood work, treatment /meds. But travel, accommodations and scans are the patients responsibility.
I have a friend on another trial for a different cancer. She is going thru MN. For the first 6 months she was responsible for travel, accommodations. But now she can go to a local doc for her blood work. And they send it to MN.
I know it’s not much help, but i hope it helped a little.
My suggestion is to find a trial and call the facility. See how they can help. And use Hope Lodge if possible.
As far as his treatment… Blood levels are often decimated by chemo. Just remember, even though he is currently on a week or so break, the chemo he received is still working.
Good luck with the treatment and upcoming scans.Hello Everyone,
My name is Leslie and my husband was diagnosed with locally advanced Cholangiocarcinoma in mid-January of this year. The first 6-week battle was to gain control over the staggering pain he was enduring. Once that was achieved, we started Chemotherapy (Carboplatin + Gemcitabine). He has finished two rounds and his platelet levels are currently in the tank so chemo is off temporarily. However, once he finishes his third round, they plan to do a CT scan to see how well the chemotherapy is working. If the tumor size can be reduced sufficiently, surgery may still be an option. However, recognizing that chemo may not be particularly effective, I am looking for other treatment options including clinical trials. But since we live in Canada and most of the trials are in the US or overseas, I’m not sure how to proceed. Can “foreigners” participate in US trials? Can you participate in your own country or do you actually have to go to the trial site? If you go to the trial site, who pays for treatment, accommodation etc.? Has anyone been through a similar experience who could offer some advice re: navigating the system? Thanks! Leslie
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