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  #1  
Old Thu Oct 6, 2011, 12:33 AM
stayinghopeful stayinghopeful is offline
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finally got the results of my dad's cytogenetics test.

Hello. Hope everyone is doing well.

Here is a link of a previous posting if anyone wants to read my dad's story thus far: http://forums.marrowforums.org/showthread.php?t=2358

Today was a stressful day to say the least. We had been waiting for about a month for the results of this test and we finally got it today...

My dad started his 2nd session of chemo today. He is still staying strong and healthy. He thankfully hasn't felt much side effects from his chemo, which is Vidaza. Thankfully, he didn't need a blood transfusion today! His Hb with down just a little bit from last week (only saw a 0.3 of a drop) and his WBC actually went up from 3.0 to 4.0 within the week.

We met with his doctor today as well. He very briefly went over his cytogenetics test. He simply said that his case is "very complex" and didn't really explain what he meant by that. I later asked for a copy of his results from the nurse...

MLL gene rearrangement was negative
5q deletion was positive in 76% of his nuclei
7q deletion was positive in 76% of his nuclei and 8.5% nuclei were with monosomy #7

I'm not sure what all that means. I know that we ideally would want no chromosome abnormalities, but are these deletions common?
I'm assuming my dad is in the high risk catagory being that he had about 15% blasts in his peripheral blood and 19% in his bone marrow. These chromosomes deletion only hurt the situation even more..
We have a meeting tomorrow with a bone marrow specialist over at Stanford. Hope he is a little more help. I'll be posting tomorrow..

(not sure how i'm feeling right now...)
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Old Sat Oct 8, 2011, 07:44 AM
Greg H Greg H is offline
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Hi stayinghopeful!

I miss your post on Thursday, but am glad to hear you were seeing a specialist at Stanford. How did that go?

With the Chromosome 7 problems and higher blast count, I'm wondering if they will recommend transplant. It's great that his Hgb seems to be improving. Vidaza seems to work best for folks who have high blast counts and, generally, higher risk disease.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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Old Mon Oct 10, 2011, 02:40 AM
stayinghopeful stayinghopeful is offline
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Hi Greg
Thank you so much for responding.

I'm sad to say that I had mistaken and the truth of the matter is, my dad has not just the two chromosomal deletions that i had mentioned, but he has multiple other ones. Now I understand what his hematologist meant when he said his cytogenetics were "very complicated".

The meeting with the bone marrow specialist went okay. He has already suggested a BMT. They drew his blood on Wed to type it. They will be testing his 3 siblings within the next week hopefully. I just pray that one of them is a match. The doctor explained to us the process of a BMT and how my dad needs to stay/live close by to the hospital for 100 days after the transplant.

My dad is feeling a bit of the side affects of the chemo now. He feels a bit nauseous at times, but thats about it. He got 2 units of blood today. His Hb had fallen from the last time he got it checked on Wed. On Wed, his Hb were 8.6 and today they were 8.1. His platelets had gone up by 1 point ( 53 to 54) and his WBC also had gone up from 4.0 to 4.6. I'm hoping that it means that the chemo is working. Wed was the first day of his 2nd round of Vidaza. I think it is a good sign that his numbers slightly went up on their own during his 3rd week before starting his 2nd cycle, right?

Thanks again for all the input.
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Old Mon Oct 10, 2011, 08:50 AM
Greg H Greg H is offline
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Hi Stayinghopeful!

Complicated cytogenetics and a high blast count are usually a recipe for transplant, if the patient is young enough -- which your Dad certainly is. I believe the way the math works is that there's a 25% chance that any sibling will be a match -- so having lots of brothers and sisters is, in this instance, a very good thing. But, even if a family member is not a match, most folks can find a matched unrelated donor [MUD] in the registry, unless they come from a more unusual mixed ethnic background.

In addition to needing to live close to the transplant center for a while, I imagine the docs told you that it would be important for your Dad to have a caregiver during transplant and that post-transplant time.

I'm not smart about Vidaza; from reading on marrowforums, it seems like there's a pretty wide variation in how folks respond -- and how long it takes to respond. But your Dad's experience so far certainly sounds hopeful to me.

He's fortunate to have you looking out for him and gathering information.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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