I am a three year + survivor of ICC. However, last fall, my blood counts started dropping dramatically and fast. I have posted about this under General Discussion, (I think that is where it was). I was diagnosed with acquired MDS, which means I have a bone marrow failure caused by the Gem/Cis I did post resection in 2014. And…of course, it is another rare cancer.
I have been doing infusions of VIDAZA, the only treatment available to me, for the MDS. It is 5 days a week, and then three weeks off. This has been since Dec 19th, 2016. I was very ill for about 2 months and then the blood counts started to change for the better.
This last week, April 4th, I had a second bone marrow biopsy and the results I was given on Friday at Mayo showed that I am …..IN FULL REMISSION!!! The chances of this happening, I also found out, were not the 50% as I had originally been told. Because I have the acquired version of MDS, the chances of remission were only 15-18%. YIKES!
I will not have to go back to Mayo or have another bone marrow biopsy until the MDS returns, which will eventually happened. I was told yesterday, that could be in 3 months, ….or a year….or 2-3 years…or occasionally someone gets to 4 or 5 years. However, my reading says that for people with the acquired version, the VIDAZA often stops working much sooner.
Right now, there are no other treatments available , so when the VIDAZA stops working, the only thing left will be a Hail Mary move…..a possible trial, though few of them will take me because of the underlying ICC.
Meanwhile, I still have to go back to Mayo for my scans for ICC, the next of which will be May 5th. I really need to not have a recurrence or met of the bile duct cancer as that would be a game changer.
For now….I feel the best I have felt since last August, when all this MDS stuff started…..and today….I’m having the 5 year old grandson over for a play date with grammy. . Not living desperately…..just living.