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 ?
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!
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 ?
@blakeman
BTW, I am not sure why Mayo calls me blakeman! I once registered (using my real name, or email name). I have no idea how to fix this, but I am not attempting to impersonate someone else. Happy to fix this and and use my own ID if anyone knows why/how this is happening.
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 ?
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 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 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.
@pixiesusan
I am so sorry for your circumstances…everything is magnified especially when we feel so bad. One thing our healthcare system has taught me is we have to be our own advocates! We are our only patients…our MDs sometimes have so many they are stretched thin and pulled in many directions.
I don’t know how old you are however your team has options to treat you. Especially if a BMT is out of reach for you. It was presented to me and I elected to pass as the 100+ days of 24 hr care wasn’t doable plus the “cure” rate was 50/50. I am on maintenance and really feel great most days…in this my “new normal” life.
I pray things work out for you!
@pixiesusan
I am so sorry for your circumstances…everything is magnified especially when we feel so bad. One thing our healthcare system has taught me is we have to be our own advocates! We are our only patients…our MDs sometimes have so many they are stretched thin and pulled in many directions.
I don’t know how old you are however your team has options to treat you. Especially if a BMT is out of reach for you. It was presented to me and I elected to pass as the 100+ days of 24 hr care wasn’t doable plus the “cure” rate was 50/50. I am on maintenance and really feel great most days…in this my “new normal” life.
I pray things work out for you!
@sonieaml I started this journey in 2017 (although, as I said, it was going on for years before). I'm now 71. I didn't meet the criteria for MDS. I was classified as CCUS, and I have tp53, so I guess that's like the worst mutation. I just feel really left behind.
I was diagnosed in April. My hemoglobin dropped to 9.3 and my doctor suggested I start taking injections of a hormone. I've had one injection which brought my hemoglobin up to 10.6. Has anyone else received injections of a hormone?
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 ?
I have MDS with anemia. I exercise by walking. I have some problems with getting out of breath. I sit and rest then am ok. Are you receiving any treatment?
I was diagnosed in April. My hemoglobin dropped to 9.3 and my doctor suggested I start taking injections of a hormone. I've had one injection which brought my hemoglobin up to 10.6. Has anyone else received injections of a hormone?
Hi Linda, There are several types of hormone-like substances that stimulate bone marrow to produce blood cells, called hematopoietic growth factors. For instance, patients with MDS, if experiencing a reduction in the output of red blood cells, may be given a drug called Erythropoietin (Epo or Procrit), a growth factor that promotes red blood cell production. This may help avoid red blood cell transfusions in some people. There are other forms of this drug as well.
It’s encouraging for you and your doctor to see your hemoglobin rising. You’re probably feeling a little more energetic too. What was the name of the injection you received?
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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!
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Hug
2 ReactionsYes, it sounds as if you are doing very well. I hope you have an excellent 2026!
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1 Reaction@blakeman
BTW, I am not sure why Mayo calls me blakeman! I once registered (using my real name, or email name). I have no idea how to fix this, but I am not attempting to impersonate someone else. Happy to fix this and and use my own ID if anyone knows why/how this is happening.
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.
@pixiesusan
sad for you
@pixiesusan
I am so sorry for your circumstances…everything is magnified especially when we feel so bad. One thing our healthcare system has taught me is we have to be our own advocates! We are our only patients…our MDs sometimes have so many they are stretched thin and pulled in many directions.
I don’t know how old you are however your team has options to treat you. Especially if a BMT is out of reach for you. It was presented to me and I elected to pass as the 100+ days of 24 hr care wasn’t doable plus the “cure” rate was 50/50. I am on maintenance and really feel great most days…in this my “new normal” life.
I pray things work out for you!
-
Like -
Helpful -
Hug
3 Reactions@sonieaml I started this journey in 2017 (although, as I said, it was going on for years before). I'm now 71. I didn't meet the criteria for MDS. I was classified as CCUS, and I have tp53, so I guess that's like the worst mutation. I just feel really left behind.
I was diagnosed in April. My hemoglobin dropped to 9.3 and my doctor suggested I start taking injections of a hormone. I've had one injection which brought my hemoglobin up to 10.6. Has anyone else received injections of a hormone?
-
Like -
Helpful -
Hug
1 ReactionI have MDS with anemia. I exercise by walking. I have some problems with getting out of breath. I sit and rest then am ok. Are you receiving any treatment?
Hi Linda, There are several types of hormone-like substances that stimulate bone marrow to produce blood cells, called hematopoietic growth factors. For instance, patients with MDS, if experiencing a reduction in the output of red blood cells, may be given a drug called Erythropoietin (Epo or Procrit), a growth factor that promotes red blood cell production. This may help avoid red blood cell transfusions in some people. There are other forms of this drug as well.
It’s encouraging for you and your doctor to see your hemoglobin rising. You’re probably feeling a little more energetic too. What was the name of the injection you received?
-
Like -
Helpful -
Hug
1 Reaction