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Old Wed Jun 26, 2019, 09:10 AM
JoMac53 JoMac53 is offline
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Join Date: Sep 2017
Posts: 75
Time to start a thread here

Okay, so I guess it's time to start a thread here for my story. First off, I hate calling this a journey so I won't! lol And sometimes I don't come here for long periods of time because it can be too depressing for me. But sometimes it's the best place to read and get info or advice so I always end up coming back. I appreciate that these forums are here.

Right now it seems things are escalating with my MDS. My oncologist had initially given me a prognosis of 3 to 3-1/2 years without treatment and I just passed the 2 year mark so not really surprising.

I've seen two transplant doctors and picked the second one. She is very calm, very soft spoken, very clear and very patient. She is very confident in herself and instills confidence in me. I just saw her again two days ago and she is a little concerned about the high number of white cells on my most recent BMB but more concerned that there are a lot of abnormal monocytes and so now I have to see a leukemia specialist on July 3. The tumor board is reviewing my case that morning and may recommend I have chemo before transplant, either Vidaza or Dacogen, which she was already considering for the blasts if they were high. But she didn't seem concerned about them being 6-9%, which keeps me in the same category as last BMB, MDS-EB-1. But now she thinks perhaps the leukemia specialist will recommend some other chemo because of the aberrant monocytes.

Blasts on aspirate smear were 6%, 9% by flow cytometry and < 3% by IHC. Lab report says that IHC disparity may be due to sampling variance or methodology. I've never seen an IHC (Immunohistochemistry) number before but this BMB was processed at a different lab than my other two were and it's very different with loads more info on it, a lot of which I don't understand yet.

On the bright side, I have three 10/10 matches, one 11/11 match and one 12/12 match, all young men in their early 20s who have shown a level of commitment to donate so far as to have had follow up blood tests after their initial swab tests. And, she says, that means no radiation pre-transplant. She is going to make her choice and request him for my donor to have him take his physical. Then we can put the transplant on hold if I need the chemo but she'll know if he passes the physical or not and can move on to the next best choice if he doesn't, without that being a delay for us, because that process takes about 3 weeks.

If they do recommend chemo that will post-pone transplant but otherwise she was talking about 4 weeks! But I still have dental issues that need to be resolved and I don't think she knows how slow dental clinics for low-income people can move. I wish Medicare would pay for dental so I could go to a regular dentist and just get it done. Does anyone know if this would be considered "medically necessary" by Medicare?

I'm also meeting with their own ophthalmologist, who follows all of their transplant patients, the same day because I already have pretty severe dry eye issues, with glaucoma & beginning cataracts, along with diabetes, and my own ophthalmologist doesn't seem quite up to the task to me. As soon as I mentioned this to her, she instantly said they'd have me see theirs. So, another reason I like her. Maybe I should mention the dental issues to her.

Well, I guess that's it for my first installment! lol Otherwise I'd end up writing a book, especially about how difficult it is to get all the ducks in a row for a transplant to happen.
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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