Last time I posted, we were looking for a facility for mom's treatment in NJ. Just a quick recap- she is 56 years old and was originally diagnosed with lung cancer with mets to the liver (no primary tumor) by Hackensack Medical Center in NJ (based on their analysis of the biopsied lesions on the liver) but after seeking another opinion from Sloan Kettering, she was diagnosed with cholangiocarcinoma (although they are not 100 % positive, since there is no primary tumor). Resection was ruled out at this point, because there are over 20 small mets all over the liver and some lymph node involvement. We then sought another opinion from Dr. Schwartz in NYC who confirmed that surgery is not an option right now. We also met with Dr. Bruckner in NYC, since we heard so many great things about him. Unfortunately, mom can't be treated by him, because parents have Blue Cross HMO which does not allow treatment outside of network. The consultation with him was very productive, since he is so knowledgable and provided us with great amount of specialized information and shared his treatment plan with her current oncologist. By the way, both doctors confirmed the diagnosis of cholangiocarcinoma with no primary tumor. So, in the end she went with Sloan Kettering, since they have an outpatient facility in NJ that is covered by their insurance.
So, now mom has finished six treatments with of gem/cis with two weeks on and one week off. She did very well during her treatment and even worked part time. Her recent ct scan showed no new growth in the past four months, and the doctor called her disease "stable" and was pleased with the results. He actually said that since her initial CT scan was done over a month before the start of treatment there could have been growth between that time and the beginning of treatment, which means that there could have been some shrinkage of lesions, as well. Another good news was that her ca 19-9 numbers came down to 200's from over 1300 at the beginning of the treatment. We are obviously so happy about all this good news. Seeing how well mom is taking to the treatment, the doctor wants her to continue with it and after a three week break, she just started another series of 6 gem/cyc treatments.
I should also mention that dad has mom on many alternative supplements (mushrooms, herbs, juicing, etc) that he took a very long time researching and that could be helping her as well, but we will never know if it's that or the chemo or the combination. Sloan Kettering website has a wonderful database of pretty much all alternative cancer treatments and what research has been done on them, whether they work or not and if they may interfere with chemo. It's definitely worth checking out. Here's the link http://www.mskcc.org/mskcc/html/11570.cfm
The only thing that has us concerned is that her stomach is more bloated than usual and the doctor said that she is probably retaining fluids. He did not mention ascites and I have to email him to ask about that but he did prescribe some medication to help with it, which I assume is a diuretic. Unfortunately, it's not working right now (although mom said that her belly is getting softer, just not smaller). Any advice on that front? How long does it usually take for the effects to kick in? Should I ask for a different type of medication for her?
Sorry for this post being so long but I had a lot to share!
I have found this website so helpful through this difficult time and hope that parts of my post my help someone, too.