MDS and anemia

@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.

@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.

@bradycardia Welcome to Mayo Connect! Sharing positive stories like yours of being in remission for 9 years after treatment for HCL (hairy cell leukemia) is such an inspiration for others.
I hope you’ll consider popping into some of conversations for members with HCL. Being able to offer hope to someone who is newly diagnosed can make such a huge difference in their perspective going forward.

Here is a link to the HCL conversations: https://connect.mayoclinic.org/search/

As for comments regarding collateral damage from our treatments for blood cancers, many drugs, from OCT meds, supplements, to Chemo may all have the potential down the road to cause some side effects. When you think about it, really anything we put into our bodies leaves an impact of some description.
Chemotherapy isn’t a treatment taken lightly by patients or the doctors who prescribe it. When it’s used, there is the goal of controlling the progression or hopefully eradicating cancer cells with a risk vs reward factor.
From my own experience, seven years ago I was in the fight for my life with AML…aggressive chemo for an aggressive leukemia. Believe me, I wasn’t worried about ‘the future’ of what those drugs may cause because I was more concerned about the immediacy of the situation! There would be no future without receiving the chemo. These drugs can buy us precious time.
Having talks with my hematologists and transplant doctor, I’ve learned to not focus on ‘what if’ scenarios. IF something happens, we’ll deal with it then. But the risk is low and I’m not going to waste a moment worrying about that possibility. I’ve had 7 amazing years at this point which I would not have had without the chemo; I’d have been long gone. And you’ve had 9 wonderful years in remission as well! These nasty drugs can achieve miracles for so many of us.
Wishing you a Happy New Year and continued excellent health! ☺️

Considering it’s almost a decade ago, you may not recall but what were your symptoms when you were diagnosed?

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!

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.

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.