MDS and anemia

@shmerdloff
Good to have all the information; keep in mind all the medical advances we have made in just my lifetime. Now with AI speeding this up, there’s hope at every turn. All the best.

@shmerdloff

I also had/have HCL which has been in remission for 9 years now. Cladribine was what I got when it last raised its hoary (hairy?) head in 2016. No sign of MDS at all. Thanks for sharing your info. I don't recall getting that warning.

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???

@blakeman
It was my blood numbers after my cancer treatment that was concerning. I had my oncologist go to another hospital, so i got a referral to a hematologist. City of Hope studies genetics, so my breast lump showed brca2 and a TP53 mutation. The hematologist looked at my blood as of that day getting lower numbers and not better after treatment and ordered a bone marrow biopsy.
I was a low to mid for AML. I had a bone marrow transplant April 9, 2024.

@blakeman
bone marrow biopsy

I don't understand why some MDs are diagnoses averse

Thanks @shmerdloff .
I would have volunteered quickly for a BMB!! I was so short-of-breath for decades (tho it was subtle when I was younger). That dyspnea knocked me out of hiking (my favorite activity); eventually even long walks at sea level were a problem. I cycled thru (useless-for-me) asthma meds and cardiac trials. No help at all. I acquired the label "anxious." (Do men get that label? It is hard to shake. I was the most relaxed person in any group back when these problems started.)
Newly dx'ed with AML, I am a patient with a "complex karyotype and poor prognosis." My hem-onc doc has not applied a label; I have super-abundant mutations and a dozen or so weird cell markers. My BMB reports describe weird mutant combos not seen before (or not reported on at least), and new mutations of old mutations, etc. I will be lucky if chemo works. I feel certain that some of this damage was acquired decades ago. (Tho it only showed up with near-constant anemia, rare petechial rashes and chronic shortness-of-breath + extreme altitude intolerance.
How did other MDS patients get diagnosed earlier? (More severe symptoms? More abnormal labs? I am very curious. I have good insurance; seemed to have smart doctors....
Thanks!

@blakeman
I have the best doctors. They are constrained due to lawsuits to follow established protocols. If I am symptomatic, they have to do tests. If my condition (pt 53, arrhythmia, hairy cell) does not fit into an established category, then I don't have anything and I am just "anxious. "
Finally, when the condition becomes full blown, life or death, someone will figure it out.
So many on this chat suffer with no dx or tx. It's not the doctors" fault. Oh! and now, what if they disagree with AI?

@shmerdloff
a balkanized systen

@shmerdloff

Yup: our medical system is all wrong. If every "paper pusher" (= claims deniers and insurance processors, tho now working on keyboards) were transformed into a caregiver, we could have abundant doctors and nurses, and better medical care available at equivalent cost. I saw plenty of warm bodies at my hospital, but few were in patient's rooms, or talking with patients. Busy busy workers. Also, most were immigrants. I interviewed every person who visited my room (last hospitalization) and delighted in meeting earnest immigrant workers from at least 4 continents! This group included doctors, nurses, aids and housekeeping or diet staff members. I was very grateful to all of them. But I am also aware that their home countries need their expertise.