Quote:
Originally Posted by Lbrown
I saw Dr Wells on Friday. It's not looking like the ATG / tacrolimus has worked and he asked if I'd consider a BMT. I said no. He said it was only 50/50 anyway.
Basically, there's no more treatments. I was surprised he'd give up so easily.
We're going to give it to March to see if the ATG kicks in, but it's not looking promising.
I don't want to keep trying treatment after treatment and possibly making it worse, but I didn't think this would be it.
Deb
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Hi Deb,
I'm so sorry you are frustrated and anxious about your limbo condition. It's part of the diagnosis, I think. When my onc told me the same thing about running out of viable treatment options I was depressed and a bit angry. It doesn't seem that we should have to deal with something that can't be treated. Of course there are no rules for this illness, so my anger was not helpful. My onc said BMT would be 50% chance of survival and if successful would raise blood numbers but not quality of life.
I've sort of gotten a handle on that and taken it as good advise rather than pursuing something that's dangerous and not practical. OTOH, doing nothing, getting off tacrolimus, and just monitoring CBC every month has stopped the decline in blood numbers and made me feel better. My ATG treatment was almost a year ago. Who can say if it's helped since it was so long ago, but don't assume you are in a sinking boat. My platelets are yet to reach 50 but I've found that just doing what I can with my activity level is good psychological therapy for me. Once in a while I can climb our local Stone Mountain which is 600 feet high and over a mile of trail. I have to rest for a day or two afterward but It's a decision I make, knowing I'll pay for the next day. For me it's worth it to have the fresh memory of doing something "normal" again. I kept thinking my doc should know what to do-- Well they have more experience with others with our illness, but each of us is different. Be sure and put your own two cents in about treatment, or no treatment. "We" decided not to do another ATG and get off tacrolimus and my numbers went up. For me it worked out well to watch and wait rather than grasping for more aggressive treatment options. but just being involved in the decision give me some ego boost. Watch and wait IS a treatment, but hard to live with until your realize it.
Best of luck with this difficult time.
Flyguy