[riley]

I got a package of these for my father and my family. People are always asking us what they’re for — it’s a great way to tell people about MDS. Hopefully more awareness will mean more research.

Julie also told me to expect a 2-4 week turnaround. I got mine in 3 weeks.

[riley]

My father’s doctors transfuse when HCT is 27 or less. My father can tell when his HCT drops below 30 though — he starts to feel tired and he begins asking for a transfusion. So far, they’ve agreed at times when he is really wiped out and his HCT is 28.x, but no higher than that.

[riley]

My father lost 50 pounds in the first 50 days of his illness (before it was diagnosed as MDS and before he received any treatment). It was the first sign for us that this wasn’t just a stomach virus like Dad’s PCP said. After he received treatment, and he started taking Megace (an appetite stimulant) with breakfast, he’s been able to gain 20 pounds back. Another 15-20 pounds will put him right where he should be. He also drinks Boost Breeze — it’s a juice supplement that he likes better than the plain Boost milkshake-type drink.

[riley]

Congratulations, Esme — that’s wonderful news!

[riley]

My father had terrible mouth sores after his second round of chemo. His doctor gave him a couple of things to use…Swish and Swallow, Magic Mouthwash and Ulcer-Ease. I think two of those are alternate names for the same thing, but I can’t remember which two. I hope you get some relief quickly.

[riley]

Hi Neil. Thanks very much for responding to my post.

I asked Dad’s doctor about Revlimid since we’ve heard such great results from it. He said that the only patients who seem to be responding well to it are those who have the 5q- (is that right?) abnormality. He said it’s not doing much for anyone else, so he doesn’t think it would help my father. Do you have any thoughts on that? I haven’t had time to look around here enough to know if anyone without 5q- has used it and had good results.

I’m not sure what they would do if he tries Vidaza and it doesn’t work. My father is very weak and immobile, so the doctor has given my father 25% odds that Vidaza would kill him. He said there’s 25% chance that it will help and 50% chance that it won’t do anything at all. Due to my father’s weakness and frequent infections, we’d have to live in the hospital while he’s being treated.

Dad’s WBC and neutroiphil count have both been at normal levels for about a year now, but he’s had 11 hospitalizations so far this year. He’s currently in the ICU with pneumonia for the third time. He’s had to go on a ventilator twice with sepsis. They can’t figure out why he keeps getting infections — his doctor is guessing that while he has white cells, they’re not functioning properly.

My father was 58 (2 months shy of 59) when he was diagnosed, and he’s 60 now.

We’re planning to ask for Dad to have another BMB. I’ve been asking the doctors for over six months now, but they keep saying there’s no point in doing it unless Dad is sure he wants more treatment, and they really seem to be discouraging him from having any more treatment. I’m frustrated with that response. Dad tolerates the BMB really well — he doesn’t have to be sedated, they only use local numbing, and he never has pain afterwards. I think there’s good reason to do it now — if the bone marrow still looks relatively good and the blast count isn’t increasing, maybe we need to look for other reasons for the frequent infections.

Thanks for any other thoughts that any of you might have for me.

[Author]

Posts