AA then Lupus and Now MDS?

[HopeW]

Hi, I am so overwhelmed and confused for the past serveral days.
In 2005, I was found to have low counts and the BMB showed hypocellularity of 15%. and then I was labeled to have AA. I had abdominal pain later on and they did exploratory laparotomy May 2005, and then i became transfusion dependent for 3 years. During this time, I had ATG with Cyclosporine 09/2005, it did't work, I got heart failure soon after that 10/2005. I had recurrent abdominal pain, vomiting and nausea until 11/2005 diagnosed to have SLE. Had used prednisone /cellcept, Rituximab, lupus seems better, no digestive issues but still very low blood counts when on cellcept and pred, neut 0.2-0.4 and need blood and platelet transfusions.
May 2008, had shingles and in critical situation, then used IV Hydrocortisone 50mg 3 times a day and then oral pred. Stopped cellcept because of infections. and two months later, my counts holds and I had been transfusion free for 7 years(they were still low, but no need for transfusions).

But my counts started to dropped in the last year, mainly RBC, up the pred to 60mg this April. it seems didn't work.
On 05/2015, I had HGB of 2.1 and being admitted to the hospital and get 5 units of blood.
And the local hematologist caught the blast in the CBC and I had a BMB, it said 9% blast in the marrow. I was so scared to have all those nightmare again. The BMB report are only partial and the results about the cytogenetic part are not ready yet.

What should I do now? Felt so devastating.

I am at SC, but may move to dallas TX next May. Any one has recommendation about where to go for second opinion or treatment?

- Hope

[triumphe64]

I live in Dallas.

I go to Cynthia Rutherford at UT Southwestern. Excellent doctor and excellent diagnostician. .

The other doctor at UTSW that would fit is Robert Collins who is an expert on MDS.

[HopeW]

triumphe64, Thank you so much for your input.
I will not move to Dallas until next May, I don't know if I need to treat this ASAP or not, considering the blasts.
Still waiting for the final results about the cytogenetic report. Worrying....

[HopeW]

My BMB showed that I have chromosome 7 deletion and also 9% blast in the marrow. Doctor said that it is not a favorable diagnosis, the only chance is a BMT.

Anyone else here has a similar situation? What is your treatment and results?

Thanks,

[HopeW]

I was hospitalized due to fever since Sept. 19. Still in hospital today (Oct. 7).

Was given IV desferal or 3 days.

They checked my ferritin level; one time is 12000, repeated twice with greater than 32000... my normal ferritin level is around 2500.

They then checked my liver function, etc.

Considering the abrupt drop in my blood counts, doctors thought I have MAS (macrophage activation syndrome)... which caused my fever, etc.

But MAS does not have a clear diagnosis criteria.

What can I do? Go ahead to receive the treatment for MAS with Cyclosporine? Anyone had experience with such a sharp change in ferritin level?

[triumphe64]

Hope

Do you have a Stat3 mutation?
Have you been checked for LGL?

I hope you at least dodged the floods in SC.