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Hey Linda,
I'm so glad you had such a good experience at Moffitt. You really needed that.
With the issue of ordering the platelets, that's part of learning the ropes. They are such a precious commodity they wouldn't ever order for Don until he was there. They don't want to take a chance of their being wasted. But as you go along these are the types of things you learn that makes dealing with all this easier in the future. The whole thing is a learning process.
You are right you need to worry about low platelets. At the same time the body is an amazing machine and can adjust to very low counts really well most of the time. Don's got as low as 4,000 and he never had a nose bleed, gum bleed or anything like that. Our oncologist has patients who live with platelets at 1,000 and
do very well.
They are starting Al off with the big guns so he may respond faster than Don. They started Don off at 50mg. and upped it every 2 weeks until he reached the 150mg. max dosage.
You both really did have long days - it kind of goes with the territory of infusions but hopefully that will change in the near future. At least you are doing something proactive and that has to help from a mental standpoint. Just take good care of yourself.
Keep us posted as I know you will.
Hi Patti,
So glad that Dean is tolerating Dacogen so well. And I hope things will go well at the VA. If I haven't before, please thank Dean for his service to our country.
As I mentioned to Linda, when transfusions are involved they do cause very long days. But I hope this will change for you as well in the near future.
I know you will keep us posted.
We are heading to NIH on Monday for a scheduled appt. This will be the first CBC that Don has had since coming off Promacta so should be interesting. They are also going to do a bone marrow biopsy. This is part of the protocol and I don't expect any surprises as he seems to be doing well. Will let you know if anything comes up out of the ordinary.
God Bless to all,
Sally
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