Progression to AML from MDS?

[Bambam]

I would love to hear from anybody who developed AML or specifically, Leukemia Cutis from MDS, which I believe is a sub-type of AML. I was diagnosed MDS RA Low Risk one year ago and a skin biopsy of lesions reports "suspicious Lekemia Cutis." I see my Hematologist today but have to say I'm scared! I'd love to hear a good news remission or recovery story if you know of one thanks so much.

[Marlene]

I don't recall anyone with leukemia cutis. I hope your hematologist can sort this out soon so you can start treating it. Good luck with your appointment today. I know how difficult it is to stay calm.

[Bambam]

Thanks for your support, Marlene. My Hematologist is puzzled - the lesions are not how he has seen Leukemia Cutis presented in the past, but he says that doesn't mean it is not ... so it's off to Biopsy again this week to see what is happening in the marrow factory. My hb has dropped significantly and he believes that this will be affecting my energy, (lack of) appetite etc. plus my wbc's are changing shape and platelets dropping. It is a worrying time, indeed, but thank God for the best Hematologist in the world!!! I believe my Omega-3 and Vit D are helping me to remain reasonably positive!!

[Lbrown]

Apparently, the gluten-induced rash is called dermatitis herpetiformis and shows IgA deposits in the skin. Just FYI if they're doing a skin biopsy.

Deb

[Chirley]

When I first got sick I had a persistent rash. The biopsy showed MAST cells. There was some talk of Mastocytosis but then the rash went away by itself and has never returned, so there were no further investigations.

I hope your BMB remains Ok.

Regards

Chirlet

[revchris5802]

I have a rash on my hands, back on knees and blotches on my arms, legs, etc... I had one area removed last year and it was biopsied to be Lichen Sclerosis. These new smaller lesions look like lichen planus, but I may get it biopsied as it looks like the leukemia cutis too, although just not as severe as pics on the internet.

[Bambam]

Since I last wrote, I was diagnosed with AML and have undergone three rounds of chemo in what looks like a promising drug trial.
I had skin issues on admission to hospital in August, but biopsies were "non specific that time. After my third round of chemo, I developed a bright red rash all over my body ... Plateaus that started out as blister like nodules and quickly changed. I itched so badly that I begged the nurses to scratch my back during the night, but of course, the best they could offer was a gentle, cold, wet facecloth rub as my platelets were very low. Yet another skin biopsy revealed Sweets Syndrome, but the Derms were puzzled because it usually presents as very painful and not itchy. Anyhow, it was, essentially a build up of neutrophils in the skin. The only treatment is high dose IV Prednisolone which brought another set of issues!
I started to feel "normal" just before Christmas and now enjoy long walks and lots of living, as well as occasional days on the sofa! My bloodwork is better than it's been for a long time and this week I have in-range WBC and neutrophils.
I have started Art Therapy as a way to deal with my fear of death but in the meantime am enjoying every minute of every day.

[Cheryl C]

Great that you are responding to the chemo, BamBam. Are you within the age range for a transplant?

[Bambam]

Thanks for your kind words. The transplant unit has been searching for a donor for a while now, but my doctor says I am a difficult match, given my mixed heritage. AND, even if
a match were found, he said we would need to have a long talk about risks/benefits. Some people I know have done we after BMT but they tend to be younger. I'm a youthful 65! Are you a candidate for BMT?

[Cheryl C]

Hi BamBam - I'm a youthful 66 (!) - healthy except for MDS and hypogammaglobulinaemia. I was ready to start the BMT process in early 2012 (my older brother is compatible). Thankfully I didn't have to go ahead because my blast cells dropped without treatment. After reading the following recent report which is for a stem cell transplant study specifically targeted at the 60-70 age group, I have decided I wouldn't consider a transplant again unless my blasts increased significantly. Your doctor is wise in wanting to inform you of all the risks associated with transplants, especially in the older age group. http://www.sciencedaily.com/releases...0624173242.htm