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deb m
Memberhi,
when my dad was struggling with MDS, he would get idiopathic fevers every night. his BMT doc told him to try Prozac or something similar. he did and it worked. he stopped having fevers every night. worth looking into for fevers that are not caused by an infection or are idiopathic.
debMembermary lou,
i don’t post very much here, but read a lot and will also miss your dad. he was very very wise and helpful. when my dad was diagnosed this forum was so helpful and your dad was an inspiration.
debMemberi’m not sure i would have wanted to use ayurveda as a cure either. just as a way to prep the body (and mind) for strenuous treatment like chemo and/or the SCT. did the doctor recommend anything?
Memberi had my dad using some unconventional treatments as an adjunct to conventional treatment.
he didn’t do any homeopathy although i consulted with my homeopath and he said he thought he could treat MDS without the SCT. my dad did want the SCT and i can certainly understand that.
my dad went to see a nutritionist and followed her recommendations and he tried EFT (emotional freedom technique) and definitely got some results with that.
he also did a lot of visualization techniques and listened to some tapes to allow his body and mind to become open to the chemo and other treatments. i think it did quite a bit of good. he is, thank God, doing well now about 110 out from his SCT.
if we had had an ayurvedic treatment center nearby i would have definitely encouraged my dad to seek treatment there. again as an adjunct to conventional treatment. i would have suggested that he do a panchakarma treatment before he went in for his SCT.
i hope your dad is doing well. are they still looking for an unrelated matched donor?
deb
Memberi have to agree about laughter. when my dad was in for his SCT, the mask he had to wear when walking in the hallways looked like a duck bill. so i used a black marker to add two dots on the top to resemble the nose holes. it was very silly but my dad wore them that way!
Jack, i’ve been praying for you wife and watching eagerly for good news. please keep us updated.
debMemberalso Dr. Alan List at The Moffitt Cancer Center in Tampa, FL is in the news a lot with his research into BMT and Stell Cells. They are having great successes there. That is where my dad had hi STC done.
debMemberthat’s probably a better indicator than age of how well you will fare. some folks have a lot of health issues going into and that can make things rough. i think a positive attitude goes a phenomenally long way as well! do you have a lot of family support. i think that’s a big factor as well.
debMembermy dad actually did well on Dacogen. he only did two rounds, though. not sure it did that much to his counts really. he still needed a tx every week. but it got his blasts down from 8% to 2% and that was important.
debMemberhe had it done at Moffitt in Tampa, Florida. they seem to be doing quite a few successful SCTs there. some related and some not. how is your health otherwise?
debMemberhi Jim,
my dad had good results with Dacogen. his blasts went down from 8% to 2%. he did two rounds. he had a SCT in January. he’s 67 years old. so age may not be such a factor. so far, he is doing very well. are they looking for a matched unrelated donor for you?
debMemberhi Jack,
i’ll be praying for some great news for your wife in 3 weeks. a few percentage points is not too much to ask!
my dad (not husband) is doing very well at the moment. his doctor says he’s one of her best patients. we feel so very very blessed to have him doing so well!
debMemberthanks, Jack.
i keep watching for your posts and hoping that your wife gets her cord SCT. how is she doing with the dacogen and valproic acid?
debMemberi did wonder about that. he did two rounds of dacogen before the STC and he was down to 2% blasts going in. he did 4 days (i think) of chemo and his WBC got down to almost nothing.
he got his blood counts and BMB results today:
WBC 5.51
Hemo 9.9
Platlets 141
the stem cells have taken over 97% and his blasts are 1%.
so things are looking good. he is feeling pretty good but his blood pressure is still low and he needs infusions of magnesium and the saline.Memberhi Tamie,
i think my dad had the full transplant. i wondered about that, but they never said mini so i assume it was not mini. he did have some nausea and diarrea but that is gone now. they were able to control the nausea fairly well but the anti-nausea meds made him sleepy. he is doing well now at 33 days. he is just really really tired! and his blood pressure is low since he can’t seem to keep hydrated. they give him saline every day.
thanks for your prayers! i’ll pray for you and your mom, too.
debMemberjust a quick update. my dad had the transplant about 32 days ago. he is doing very well so far. he is at the hope lodge near the transplant unit as he has to go in for infusions of magnesium and saline every day. his blood counts are looking very good. we are cautiously optimistic!
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