Is this a remission or misdiagnosis?

[Alicia44]

I am hoping that someone can give me some information. I am new here and this is my first post. In March 2007 my husband started having extreme shortness of breath and fatigue. After heart test etc his regular dr determine that the shortness of breath was caused by a hemoglobin of 5.3. (He is 55 yrs old and was working at the time) He was immediately hospitalized and transfused with 5 units of blood. He has had 5 biopsies and the first said MDS type 5q-the second at MD Anderson said that he had lymphoma and was given targeted chemo. This did nothing and he continued having tranfusions at two per week. His third biopsy said he had MDS but not 5q-. His 4th was inconclusive and his 5th said mild MDS. These biopsies were done both in Dallas and in Houston at MD Anderson. The MD Anderson dr recommended Procrit and in October he was to start that. He went in for his appt to get the Procrit and his regular transfusion. He could do neither since his hemoglobin was 10.1, (normally just over 9.0 after a transfusion). He had not been transfused in 2 to 3 weeks. Since October his hemoglobin had continued to increase and is now at 14.0 with no treatment and no transfusions. The doctor has not offered any explanation for this at all. Between April and October he rec'd almost 40 units. He is now on Exjade due to his iron level being around 1000 but no other treatment. Has anyone else experienced this?

[Ruth Cuadra]

Hi, Alicia.

It's been a while since you posted so we're wondering how your husband is doing. Did his blood counts continue to recover? I experienced varying results from a series of bone marrow biopsies, but the consensus was that they indicated my bone marrow was unstable and therefore likely to transition from MDS to AML at any time. If your husbands counts did recover, could the doctors offer any explanation for what caused them to be so low back in 2007?

Regards,
Ruth Cuadra

[Alicia44]

Since I posted in January his Hemoglobin continued to rise and at his last check up in February his count was 15. He never started any treatment and the doctor has never really given us an explanation for the count. His original doctor left the practice and another doc took over but she didn't have any explanation either. With my whole heart I believe it was the many prayers that were prayed for him. We go back to MD Anderson in May and will consult with the MDS specialist there for a follow up. Last time we saw him was when he prescribed the treatment that he was to start in Dallas but never did. Life has certainly been a change. Last April we were told he had 20 to 30 months to live and more likely closer to 20. He now wants to go back to work and just booked a trip to Disneyworld for August. If anyone is given the diagnosis my husband was my advice to them is ABSOLUTELY DO NOT GIVE UP AND ACCEPT THAT. My husband's biggest problem now is that he is getting chunky from being bored and eating all day. We'll take that !!!! Thanks Ruth for checking back. I will pray for your recovery!