chromosome 6

[riley]

Hi everyone. I’m new here, and I’m hoping you might be able to help me.

My father was diagnosed with MDS in February 2004. He has one chromosomal abnormality called a ringed marker chromsome 6. Does anyone here have that, or have you heard of it?

We’ve been to Mayo-Jacksonville and Emory, and both hospitals told us they haven’t seen this abnormality before. It makes it hard to choose treatments since we don’t have anything to go on.

Dad received two rounds of chemo last year, and it now seems to be time to consider more treatment. We’ve been in the hospital every week or two with a new infection. The doctor at Emory is proposing Vidaza over Revlimid. Dad’s WBC is normal, his HCT tends to be 27-32, PLT is in the 30s and his blast count is ranging from 3-8 lately.

Thanks very much for any advice or thoughts that you can share with me.

[Neil]

Have recall an abnormal chromosome 6 mentioned by any of the Forum participants.
Feel the docs will focus on keeping his blasts from increasing or to reduce them.
You might wish to ask why they prefer Vidaza over Revlimid.
If he does not respond to Vidaza ( response rate is about 18%) will they switch over to Revlimid?
At some future date he will gave another BMB. Am curious about what chromosome 6 will look like at that time.
With a normal WBC count one would not expect frequent infections. What is his differential? Are his neutrophils at a normal level?
What is his age? Some times age and infections are related.
Neil

[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]

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