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 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 ?
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!
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?
@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?
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.
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.
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?
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 Clarification: I was first diagnosed with HCL in 2011 and was treated with pentostatin. In 2016 it showed up again and I received cladribine to put it into remission again.
@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.
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?
@loribmt I actually had no realized symptoms and it hadn’t been picked up on routine blood tests. It was discovered during pre-op testing for another rare disease, Acromegaly, which required neurosurgery to resolve. But that’s a whole other adventure that doesn’t necessarily belong in this discussion. (There’s only been one other reported case of the 2 diseases occurring simultaneously so they are unlikely related.)
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
My doctors first clue was anemia and had me take iron pills. Later, during an mri for something else, my liver showed signs of iron overload. That’s when they did a bone marrow biopsy and discovered I had MDS with hemochromatosis as well.
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@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!
-
Like -
Helpful -
Hug
1 Reaction@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.
-
Like -
Helpful -
Hug
2 Reactions@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?
-
Like -
Helpful -
Hug
1 Reaction@bradycardia Clarification: I was first diagnosed with HCL in 2011 and was treated with pentostatin. In 2016 it showed up again and I received cladribine to put it into remission again.
-
Like -
Helpful -
Hug
1 Reaction@loribmt I actually had no realized symptoms and it hadn’t been picked up on routine blood tests. It was discovered during pre-op testing for another rare disease, Acromegaly, which required neurosurgery to resolve. But that’s a whole other adventure that doesn’t necessarily belong in this discussion. (There’s only been one other reported case of the 2 diseases occurring simultaneously so they are unlikely related.)
-
Like -
Helpful -
Hug
2 Reactions@blakeman
My doctors first clue was anemia and had me take iron pills. Later, during an mri for something else, my liver showed signs of iron overload. That’s when they did a bone marrow biopsy and discovered I had MDS with hemochromatosis as well.