Things have been going well with the treatment. I get another scan of my arm at the end of the month and I'm absolutely terrified of getting the results. For me, the bi-weekly treatments are much better tolerated and I'm beginning to feel normal again. When I start to feel normal, it's so easy to forget that there was this evil monster living in my arm.
So to remind myself of why I'm doing this, I started looking at the Facebook page for desmoids. It's been helpful for me to reach out to others. Someone please remind me when this thing is gone, to post a happy story. When I research everything it's easy to only find the negative. One day I'll be free of this and its only fair for people to hear positive news.
So one thing lead to another and I saw this article about methotrexate/vinblastine and doxil.
http://www.ncbi.nlm.nih.gov/pubmed/20799916
For people out there reading this blog looking into treatment, I suggest the article. The treatment I'm on which is methotrexate/vinblastine (MTX/VBL) does work to shrink or stabilize the tumor for 78% of people. Other studies have had similar results. Doxil (doxorubicin or PLD) is the drug that was recommended to me by the Sloan-Kettering doctor. I still can't find a doxil study that has more than a handful of patients. This one did show 14 people who were on it and NONE of them with a recurrence. Crazy, huh? So why aren't there more studies on Doxil?!?
I just got a request from the SFA to be part of a clinical trials of KLH Conjugated Trivalent Ganglioside Vaccine. Which contains GM2, GD2 Lactone and GD3 Lactone. (what a mouthful) It is suppose to "target" the cells and teach the immune system to "see" these cells and attack any cells left. I am going to turn it down right now but it sounds promising!
ReplyDeleteInteresting - I hadn't heard of that study. As long as your tumor is still staying stable, there's no reason to give yourself additional drug.
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