Recently diagnosed with MDS with anemia and would like to connect

@davi0937

Glad to hear you remain positive and are a candidate for a BMT.

There are so many variations of blood diseases that treatments are complicated and results uncertain.

Hopefully in 5 years discoveries are made to increase the success of treating these conditions.

In the meantime tiredness, dizziness, lack of energy, heart palpitations and life shortening are experienced by millions of people world wide with blood disorders.

Taking Remlivid for the 2nd time this year. First time, NO effect...different doctor suggests cutting dose. Waiting to see if any effect. Putting on tons of water weight...concerned how it affects both the Remlivid and my heart!.

@jeffreykassover1

I was on Revlimid for a total of 4 months straight with pills every day ( no breaks).

Started at 5 mg for 2 months with no affect and then switched to 10 mg with zero affect.

Doctor discontinued me because of failure to work.

Then went to Rebolyl ( spelling) .
I have had 3 shots at 3 week intervals and scheduled for 4 th shot this New Year’s Eve morning.

So far the first 3 shots have done nothing.

My weight has stayed static at 160 pounds.

My biggest complaint is very dizzy. It feels like vertigo..

I test myself in a blood pressure cuff and have normal blood pressure.

QUESTION:

Is you weight gain from drug induced holding water or an calorie consumption increase ?

@montauk ...Thanks for your reply. I certainly do not think I am eating too many calories; in fact the opposite. I'm eating very few calories but continuing to either gain weight or not lose weight. I put on about 30 pounds in a few weeks and went into the hospital over Thanksgiving. Then lost 28 pounds in 3 weeks. Now, the trend up again, and my cardiologist is involved. Trying a different dosing on Remlivid, and checking blood regularly. Transfusion, last week. Rebozyl next, I suppose. Stany Strong.

I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

MDS and Cladribine - I had (have) hairy-cell-leukemia ("successfully " treated). According to AI,
Cladribine can give you MDS. I think my excellent hemo-doc is doing cya, telling me the MDS was there before, but "hidden" from the bone marrow analyses by all the hairy cells.
Looking up MAIDS.

MDS and Cladribine - I had (have) hairy-cell-leukemia ("successfully " treated). According to AI,
Cladribine can give you MDS. I think my excellent hemo-doc is doing cya, telling me the MDS was there before, but "hidden" from the bone marrow analyses by all the hairy cells.
Looking up MAIDS.

I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

How did you get your MDS diagnosis? I have had increasing dyspnea for decades. Plus severe reactions to altitudes over 500 feet. Finally it was years of "refractory anemia" and abnormally low #s of RBC's. IV iron was only slightly helpful. No one would investigate more. No bone marrow biopsies (my Hgb was 10-ish). Suddenly I had dangerous pancytopenias Marrow biopsy revealed AML. Now I am getting chemo for dozens of mutations and bizarre cell abnormalities. I have a "complex karyotype" and a "poor prognosis." I am still baffled that no doctor would look earlier for marrow mutations. What was the screening test that I missed? I complained to dozens of doctors at various major medical centers. Other organs were tested - year after year after year. Never my bone marrow. What went wrong???