Right now the MDS isn’t an issue. It will be at some point, but so far so good. There is no Genetic Mutation that caused my original diagnosis for CLL, just dumb Luck.
The MDS is only compromising about 10% of my Marrow right now and it isn’t too aggressive “yet” so we wait and see. It isn’t a matter of if, it’s a matter of when.
After my last Chemo for the CLL I was informed by my other Oncologist at Cedars Sinai (part if their BMT Team) that I will probably never need Intravenous Chemo to treat it again.
Apparently there are some new Oral Chemo Treatments that are very effective for CLL, so some good news with the bad.
Thanks for the info. I’m glad you got through the BMT well, it can get pretty hairy. A friend of mine was able to do Autonomous BMT to treat his Lymphoma. Was your Donor a Sibling or did they have to find you a matching Donor?
I have one older Brother who is almost 70 and he actually is a close match. The odds are only 25% and the people at Cedars couldn’t believe it since he is my ONLY Sibling. I know a guy with six Siblings and none of them matched.
If he is still around when it comes time for a BMT I should be in good shape. Might have to do a Walt Disney with him. My Brother’s Wife had a chuckle when I told her that but my Brother wasn’t too amused. LOL
Currently with AML, the same treatment has been used for 40 years! it's 7+3, inpatient. 7 days, 24 hours a day of one chemo intravenously and then 3 days of injection of another (Cytarabine & Idarubacin) Then it's followed up by consolidation which is monthly of 5 days inpatient of chemo. Only larger hospitals treat AML, so keep that in mind. I had an allo/donor transplant. My sister was my donor and was a perfect match. I've had very little GVHD, except for my eyes which is very blurry.double vision quite often. About to see the opth about restasis. Recuperation from the allo transplant is hard as you become a bubble girl/guy for a long time. The difference with allo SCT/BMT is the chemo is pretty harsh and then the usage of tacrolimus (transplant - immunesupprent drugs) I can no longer go into the sun without full coverage - forever. No more pink cheeks, whatsoever. There are many other restrictions as well. Fungal infections are a big risk. So, I'm still on a host of prophylactic medications. Considering it all, I'm doing well - had pneumonia once. Neurapathy and fatigue are never ending.
I wanted to talk to you about MDS. Should it turn to AML, it can be a bit aggressive. AML is only treated at specific larger hospitals inpatient. So, it's not treated at a local chemo center. So, you may want to think about good teaching hospitals in your area or MD Anderson should you ever need to go that route. It seems that many MDS patients on the forums are using Vidaza and it is helping them a lot. I pray you never need a transplant. The chemo was very potent, enough to kill the entire bone marrow. I don't think they use alto for MDS turn AML. Just keep in mind the symptoms I had before I was diagnosed was serious hip and leg pain, breathlessness, fatigue, bleeding gums, and flu’ish feelings. But, the hip-leg pain was so unusual that it will catch you off guard. Almost all AML patients seem to get it - at least the ones on the forum.