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Old Sat Jan 4, 2014, 05:12 PM
sherryjac2 sherryjac2 is offline
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Join Date: Mar 2012
Location: Bluffton, SC
Posts: 23
Exclamation Erythroleukemia…AML 6A for me.

Peachy,

I am a 62 year-old female and I was diagnosed at 60 without any symptoms…just discovered on a routine physical...AML 6A in Feb. of 2012. I also had a couple chromosonal abnormalities trisomy 21 and a deletion of 20q. I was initially given Vidaza on a trial basis to see if it would reduce the blast level, but after just a few cycles it was clearly not helping. I searched in the forums for others who had AML 6, but we are a rare type and I got no replies. It's also difficult to find information on line except in medical journal forums. Good luck reading those cryptic entries.

Because AML 6 in either form A or B is resistant to treatment and I had no other co-morbidities, and was in good physical shape, I was moved quickly to transplant. Induction chemo (the chemo they give you to put your cancer into remission prior to transplant)…because of my age was the "reduced intensity" version…however I didn't find the 7 days of chemo to deny me any of the side-effects felt by the full blown version. Everyone reacts differently though. The good thing was I did achieve a complete remission with the first cycle. In the meantime, my only sibling, my sister, was tested and found to be a 10/10 donor (talk about luck!). I had my induction chemo beginning May 9th of 2012, had 2 days of additional chemo right before the transplant, and went to transplant on July 3. I am going Jan. 8 for my 18 month check-up and will have another bone marrow biopsy. I had one at 6 months and 12 months and both showed 100% donor cells, which is what you want to see. Hopefully, I'll see that again next week, as the further I get from transplant with no relapse the better my chances are for long term survival.

I live in South Carolina. I went to MUSC (Medical Univ. of SC) and had a top notch transplant team. My doc is the head of the clinic and very experienced. In fact, he even had the experience of being a care-taker, as his wife developed AML 13 years ago! I felt very confident in the team and the hospital. While logistics would seem to be low on the priority list for choosing a hospital, you need to consider that after transplant your husband will be required to stay within a close range of the hospital for at least 100 days. This means staying somewhere (home, hotel, family, or cancer center accommodations at the hospital?) many days after his initial discharge. He will also be required to have a constant care-taker, probably you? So, you too will be away from home a long time unless you have family to support you. Follow-up appointments will be very frequent in the beginning…once again, logistically, the closer you live to the hospital, the better. I could have gone to the Mayo in Jacksonville, FL, but it was much further for us to drive. I am very glad I found the Charleston team.

I don't want to babble on about my experience but am most willing to share any and all information I have about AML 6 or any other questions you may have. I remember how my husband and I got consumed by all of this when I was first diagnosed and for months afterwards it was all we could talk about. 18 months post transplant we rarely talk much day-to-day about it, but since I'm heading for my check-up next week it's looming over both of us. There's no sugar-coating this, it's a sucky cancer! On the positive side, I can tell you that the whole experience did present many positive moments between my husband and me, our family and friends. It will change you forever.

Take care & stay in touch with the forum…lots of people here have tread where you will soon follow.

Sherry
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Sherry Baby 62 Diagnosed 2/11/12 MDS to AML-6; del 20q and trisomy 21; Vidaza 3 month trial unsuccessful; ALLO BMT 7/2/12; Sister Donor 10/10 match; Chronic GVHD mucous membranes, otherwise all's well :0)
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