Seeking information

[Valerie Fons]

I live on an island in Wisconsin, 50 miles from the nearest hospital. My husband is enrolled in Hospice, dying in our home. I am his care-giver. We have three minor children in our home and an 18 year old, disabled son who helps me change dad’s diapers. In 2009, our children went through Acute Lymphoblastic Leukemia with me and a bone marrow transplant in 2010. I had no idea how fragile I was. In Oct., 2016, my counts began to drop noticed during a screen for hypothyroid. In Nov., I had a bone marrow biopsy showing 4.6% blasts in marrow. In Dec., I went to SCCA with my perfect match sister. Dec. 7, SCCA chose to treat with donor lymphocyte transfusion (DLI) 0.33 million lymphocytes. Dec., bone marrow biopsy showed 2.4% blasts in marrow. Jan. bone marrow biopsy showed 6.0% in marrow. Feb. 17, I returned to SCCA and received DLI (10 million lymphocytes). GvHD mild to non-existent. Weekly, I go for blood tests and exam at the closest hospital to home. My blood counts are continuing to trend downward. My platelets were 20 last week. I am settling our estate. Giving our farm to a not-for-profit. Found homes for our minor children. Caring for my husband. Trying to remain hopeful while providing for the ones I love. I do not understand MDS. I have not consulted an MDS specialist. I do not know why SCCA did not prescribe Azacitidine. Recently, I heard about a clinical trial with pevonedistate. I’ve heard that a second bone marrow transplant would give me less than 20% chance survival. I’ve heard I have advanced or high risk MDS. I was told I can die in six months from infection or bleeding. I’m diligently engaged in settling my affairs and continuing to care for those I love. But, I don’t think I’ve done everything I can to care for myself.
An RN for a doctor at Cleveland Clinic said he would not give a second opinion, but I could come and meet the doctor and hear about the clinical trial (NCT0261077) which would require a screening apart from the first visit which would not be covered by insurance but at a charge of 750.00. I’m trying to listen and trust my team in Seattle, but I have questions which I have not been able to come to peace about. I am understanding MDS is not curable except with BMT. I’m understanding I may need transfusions. I am functional at present. Please send insight so I can better respond to what is happening at this time in my life. Thanks.

[Devon Grosskopf]

Were you chemo before the transplant?

My bone marrow specialist said I have to be in remission with chemo before the transplant. I was diagnosed with AML with MDS. They start 1st to treat the AML but it didn’t work went from 20% to 40% did 1 round of decitabine for 5 day and blast went to 2%. 3 weeks off 10 day of decitabine and I’m in remission but they found a match for me to get a bone marrow transplant.

I would go see a specialist. I’m sure this website could help find some better resources and opinions. Most of the ppl with MDS are in their 60-70s. I’m 32 and I have read many success stories.

[Sherry Pratt]

Valerie, I just had a stem cell transplant in Jan at the Cancer Treatment Center of America near Chicago. I am doing really good and will be going home in April. This place is like no other. Send me an email if you would and we can talk more. Pratt8075@gmail.com. Sherry

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