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rar
ParticipantWhat are your platelets and red blood count? Your hematologist should be able to tell you if you have MDS. Is she also an oncologist? It might be wise to get a second opinion. 24 is young for MDS but not impossible. It may be wise to wait on kids until you have MDS sorted out. 2.4 is out of range for WBC, but not critical. Mine was as low as .2.
Ray
ParticipantI was almost 74 when I had a transplant 3 years ago. There was never a discussion of my age. A transplant is more dependent on being healthy enough to survive transplant. I know less about drugs. There are some that will postpone death by several years, depending on the form of the MDS. Marijuana is used for pain relief. I had very high risk MDS and no real pain. What type of MDS does your mother have? For the lower risk types wait and watch makes sense.
Ray
ParticipantHi,
I had a transplant 3 years ago. At the 18 month point I wrote a brief summary of my experience. It is the 3 post at https://www.mds-foundation.org/forums/search/AG-221/ While I still have GVH without the transplant i had a 4% chance of living this long. My doctors always tell me how well I am doing. I have no regrets.
April 14, 2017 at 4:44 pm in reply to: Steroid-Refractory Chronic Graft-Versus-Host disease (SR-cGVHD) Research Study #32103ParticipantI participated in the survey. She suggested that you might have some resources for GVHD treatment.
Ray
ParticipantI live 60 miles north of Denver. Temperature today was 63 for a high. There is less air here so you get winded more easily. Alcohol has twice the potency so watch what you drink, keep hydrated.
Participantdid she consider a transplant?
ParticipantI had about a dozen BMB. Most of them was no worse than a mosquito bite. On one the local anesthetic didn’t work and hurt pretty bad. Find a NP who knows how to give a anesthetic shot and stay with them.
Ray
ParticipantThe drug I took was Enasidenib, also known as AG-221 from Agois, is a potent and selective IDH2 inhibitor with potential anticancer activity. It is only for people with a mutant IDH2 gene. Clinical trials are free. Treatment in the US is expensive. For my transplant, complications and aftercare the bill was $2 million. I did my clinical trial at University of Colorado Hospital in Aurora Colorado. You can find all US clinical trials at https://clinicaltrials.gov/
ParticipantIn the US a blast count of 21% is no longer MDS but is leukemia (AML). I had MDS RAEB-2. At age 73 I had a successful stem cell transplant. This is the only cure. Other than a transplant Vidaza and transfusions are the current treatment. I did a clinical trail that reduced my blasts from 11% to 1%, so you might want to explore that treatment.
Ray
ParticipantBMB is bone marrow biopsy. BMB is used to tell if you have MDS and helps in determining what type. MDS is a family of bone marrow cancers. The type I had is MDS RAEB 2, the worst with a 3 year survival rate of 4%. With your blood counts yours is probably one of the milder forms. There are drugs and transfusions that can prolong life expectancy. The only cure is a stem cell transplant. I had one 2.5 years ago and it seems to have cured the MDS but left me with graft versus host disease. My symptoms of GVHD are pretty much under control. ANC is absolute neutrophils count, disease fighting white blood cells. 71 is still young, I am older.
Ray
ParticipantWhat is your diagnosis, ANC, WBC, RBC, HCT, HGB. Post the blood tests with their reference range. What did the BMB say. There different types of MDS. Don’t take iron unless it is prescribed by a hematologist.
Ray
ParticipantI had MDS RAEB2. I was diagnosed about 3 years ago. I was told 3 year survival rate with transplant was 30%, without transplant was 4%. I was 73 at that time. For a much younger person odds are better. 30 is a whole lot better than 4. I had the transplant with no real problems. Since then i have had problems with GVHD. My team of specialists are doing a pretty good job of mitigating the symptoms. I made the right decision about having the transplant.
Ray
Participant3 years ago at age 73 I received a SCT. Doctors say my MDS RAEBII is cured. Get at least a 2nd opinion.
ParticipantA transplant cured my MDS. Don’t be so pessimistic.
ParticipantIn the thread “new to MDS” a have a fairly long description of my transplant experience. It had its bumps in the road. At 2 years since transplant my doctor thinks I have about a 90% chance of living a normal life, he said it is nice to see a success story for a change. Of course I would do it over again. Maybe I would bring along a steam roller to smooth some of the bumps. I was on phase 1 study of AG221 which lowered my blasts from 13$ to 2% in 2 months. No vidazza. Transplant was done at University of Colorado.
Ray
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