Wow !

With 2 units of blood tho highest I ever got was 9.

Can you honestly say you feel tremendously better, or is it better, but just marginally ?

The reason I ask is my dream, once in my remaining lifetime I would love to see what 10 or 11 hemoglobin would feel like from my normal low value of 6.9 to high transfused value of a high of 9.0.

My levels go up EXACTLY one digit per transfusion unit.

You had a marked higher elevation per 2 units infused.

Sometimes you get a transfusion which it right at its expiration date limit which already had hemoglobin degradation,

So glad to hear you are in the 11’s.

Let me know how much better you feel, and is it real as measured by significant energy improvement or more psychological .

You went up so much in hemoglobin !

I hope it stays above 9 for as long as possible.

That is fantastic !

Merry Christmas.

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!.

I, too, was in clinical trial 0974 & it did not work after several months although it did increase my hemoglobin a bit. I was then put on Aranesp in May 2025 & my hemoglobin has pretty much stabilized between 10-11 with a 300mcg injection every 3 weeks. I'm happy to report, no apparent side effects at this point.

Thanks, I will.

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.

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???

I don't understand why some MDs are diagnoses averse

I am experiencing the shortness of breath that you described and haven’t anything to attribute to.
I was diagnosed and started treatment for AML in March 2024.
After intensive induction therapy my treatment has been steadily adjusted down to now one day of Dacogen and 2 days of 4 pills each day of Ventclexta every 5 week's. None of my numbers have gotten into the “normal” range or if one or two do, they drop back down the next week (my CBC blood draw is done weekly). While the latest measurable residual disease blood test (MRD) didn’t show my FLT3 or NPM1 mutations it did discover SF3B1 or MDS. My Hem/Onc said he believes my MDS mutation has been there all along since it is typically a precursor to AML and why my numbers look like a saw tooth (up and down). My AML came on fast and severe and without symptoms. So they were not looking for anything other than the mutations that were so glaring when they did my initial BMB! I am happy to report that I am in remission and my treatment schedule has been adjusted accordingly. I am blessed and grateful for 2025 and excited for 2026 full of hope and promise.
I wish the same for all of us!

Yes, it sounds as if you are doing very well. I hope you have an excellent 2026!

I had long-term issues, too, that no one addressed. First, I had very low platelets (60-ish) for years, which were not only not addressed but also not mentioned to me. During that time, I complained of little energy, shortness of breath, and so forth. Kept getting my thyroid tested and sent to heart doctors, and nothing was wrong there. Yet each of those specialists had access to my medical records and saw the platelets (in our local health care system, abnormal blood tests are highlighted in red on the report).

In 2017, I met with a GI doctor for a pre-colonoscopy workup, and he asked me what was being done about my platelets. I said, "Huh?" He said he could look back 10 years of my records and at least 20 blood tests, and they were all low throughout that entire 10-year period. He sent me to a hematologist at our local community hospital, who did a BMB right then. When the results came back, he sent me to Dana-Farber.

Here is another example that happened 2 days ago, not MDS-related - but still. Long story that I won't go into details, but I'm having severe allergic reactions to something for some weeks now. On Thursday, I went to the ER. I had scratched myself to bleeding from constant itching, my eyes were bloodshot, I had a terrible sore throat, coughing, and I felt like my throat was closing. Had a lot of trouble breathing.

I got in quickly, and they loaded me up with all sorts of drugs. Within an hour, I was breathing and feeling better. The ER doc tells me I had a severe allergic reaction to something, and I need to get an EpiPen and carry it with me all the time. Now it's 7 pm on New Year's Day, and I say, "My pharmacy is closed." She says get it tomorrow. Oh great. I said that I had to go back to the same house where I'm getting the reactions, and she asked, "How is that my problem?" I told her I feel like I'm going to be back soon, and she clearly told me that I can't keep turning up at the ER (this was my first visit). That I had to see an allergist, which of course is the plan, my appointment is scheduled for a month out.

I went the following day to pick up the EpiPen, and it $549, which I did not have. That is a snapshot of healthcare in America, which really does not qualify as healthcare for a whole lot of us.

I really hoped that I'd maybe be a candidate for a transplant, but I need a 24/7 caregiver and money because I have to live in the Boston area (check out those rents) for about 100 days. So transplants are for couples, people with family, people with the means or job to access great healthcare, or the wealthy. I'm not any of those.

I'm so disillusioned with my country.