Welcome to Connect @lindak123 Since you were recently diagnosed with having Myelodyplastic syndromes (MDS) you probably have a ton of questions about your condition. We have quite a lively group of MDS members with various discussions. I thought a good introduction would be to point you to this conversation (link below) with members @momz, @rrivory@smetzing and many others who are sharing their experiences with MDS.
How was your diagnosis discovered? Were you having symptoms of anemia that led to testing or was this found through routine blood work? Are you taking any medications or are you in a mindful watch period?
Welcome to Connect @lindak123 Since you were recently diagnosed with having Myelodyplastic syndromes (MDS) you probably have a ton of questions about your condition. We have quite a lively group of MDS members with various discussions. I thought a good introduction would be to point you to this conversation (link below) with members @momz, @rrivory@smetzing and many others who are sharing their experiences with MDS.
How was your diagnosis discovered? Were you having symptoms of anemia that led to testing or was this found through routine blood work? Are you taking any medications or are you in a mindful watch period?
I have been anemic for many years. I have had surgical procedures such as knee and hip replacement. The doctors would give me a transfusion without discussing the reason why. They say it would make me feel better. I was unable to donate blood to myself prior to any surgery because of my RBC being so low. I have been following my results of blood work on my patient portal since it was made available. I told my PCP I was concerned about my blood work coming back abnormal. She sent me to a Hematologist/oncologist. I had a bone marrow biopsy done. That's when the MDS with Anemia was discovered. When he did the initial blood work on me my hemoglobin was 10.1. the last check up showed it at 10.8. He said I was getting better. I know that there is no cure. It kind of bothered me that he said what he did. So I am on watch and wait.
I have been anemic for many years. I have had surgical procedures such as knee and hip replacement. The doctors would give me a transfusion without discussing the reason why. They say it would make me feel better. I was unable to donate blood to myself prior to any surgery because of my RBC being so low. I have been following my results of blood work on my patient portal since it was made available. I told my PCP I was concerned about my blood work coming back abnormal. She sent me to a Hematologist/oncologist. I had a bone marrow biopsy done. That's when the MDS with Anemia was discovered. When he did the initial blood work on me my hemoglobin was 10.1. the last check up showed it at 10.8. He said I was getting better. I know that there is no cure. It kind of bothered me that he said what he did. So I am on watch and wait.
Hi Linda, Looks like you had to be your own advocate for health care. I’m glad you took the initiative to get a referral to a hematologist after your latest blood work was abnormal. It’s a little surprising that you weren’t referred to a hematologist years ago when you required transfusions for multiple surgeries and not being able to donate blood. That’s the type of thing where doctors usually recommend a follow-up with a blood specialist.
I’m glad you’re being seeing now and monitored. There are members in Connect who are also on a watch and wait status. Though I’d rather refer to them as active surveillance. My oncologist refers to my status that way as well. Watch and wait sounds like we’re waiting for the other shoe to drop. Feels more ominous. Sometimes ‘there is no other shoe’ and conditions can remain stable…not necessarily “normal” but at least stable.
So, having your lab results monitored on a routine basis will allow you and your doctor to keep an eye out for any changes. How frequently will you be having labs?
I have been anemic for many years. I have had surgical procedures such as knee and hip replacement. The doctors would give me a transfusion without discussing the reason why. They say it would make me feel better. I was unable to donate blood to myself prior to any surgery because of my RBC being so low. I have been following my results of blood work on my patient portal since it was made available. I told my PCP I was concerned about my blood work coming back abnormal. She sent me to a Hematologist/oncologist. I had a bone marrow biopsy done. That's when the MDS with Anemia was discovered. When he did the initial blood work on me my hemoglobin was 10.1. the last check up showed it at 10.8. He said I was getting better. I know that there is no cure. It kind of bothered me that he said what he did. So I am on watch and wait.
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 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 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 ?
That is interesting. How long ago were diagnosed with MDS? I have found if you enter MDS in the subject box above many, many posts will come up. Also, the knowledgeable monitors will post info most often. You have already received one link to review.
I was diagnosed with MDS within a year of breast cancer treatment. I must say I did not know with some changes what came from what. Fatigue i had. Shortness of breath no. I am just one person, so others may have had this symptom.
That is interesting. How long ago were diagnosed with MDS? I have found if you enter MDS in the subject box above many, many posts will come up. Also, the knowledgeable monitors will post info most often. You have already received one link to review.
I was diagnosed with MDS within a year of breast cancer treatment. I must say I did not know with some changes what came from what. Fatigue i had. Shortness of breath no. I am just one person, so others may have had this symptom.
@katgob
I guess I should’ve mentioned also that I am a male. I was diagnosed 4 years ago. My symptoms have always stayed about the same with some days better than others. I am currently receiving REBLOZYL injections every 3 weeks.
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 ?
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In this Chat, blood disorders/myeloma, thete are many contributors. See also Mayo website
Welcome to Connect @lindak123 Since you were recently diagnosed with having Myelodyplastic syndromes (MDS) you probably have a ton of questions about your condition. We have quite a lively group of MDS members with various discussions. I thought a good introduction would be to point you to this conversation (link below) with members @momz, @rrivory @smetzing and many others who are sharing their experiences with MDS.
I’d written this response in the discussion which gives some information on MDS that might also be helpful to you. https://connect.mayoclinic.org/comment/925760/
~Here’s the link to the entire discussion of:
Living with MDS- myelodyplastic syndromes https://connect.mayoclinic.org/discussion/living-with-mds/
How was your diagnosis discovered? Were you having symptoms of anemia that led to testing or was this found through routine blood work? Are you taking any medications or are you in a mindful watch period?
I have been anemic for many years. I have had surgical procedures such as knee and hip replacement. The doctors would give me a transfusion without discussing the reason why. They say it would make me feel better. I was unable to donate blood to myself prior to any surgery because of my RBC being so low. I have been following my results of blood work on my patient portal since it was made available. I told my PCP I was concerned about my blood work coming back abnormal. She sent me to a Hematologist/oncologist. I had a bone marrow biopsy done. That's when the MDS with Anemia was discovered. When he did the initial blood work on me my hemoglobin was 10.1. the last check up showed it at 10.8. He said I was getting better. I know that there is no cure. It kind of bothered me that he said what he did. So I am on watch and wait.
Hi Linda, Looks like you had to be your own advocate for health care. I’m glad you took the initiative to get a referral to a hematologist after your latest blood work was abnormal. It’s a little surprising that you weren’t referred to a hematologist years ago when you required transfusions for multiple surgeries and not being able to donate blood. That’s the type of thing where doctors usually recommend a follow-up with a blood specialist.
I’m glad you’re being seeing now and monitored. There are members in Connect who are also on a watch and wait status. Though I’d rather refer to them as active surveillance. My oncologist refers to my status that way as well. Watch and wait sounds like we’re waiting for the other shoe to drop. Feels more ominous. Sometimes ‘there is no other shoe’ and conditions can remain stable…not necessarily “normal” but at least stable.
So, having your lab results monitored on a routine basis will allow you and your doctor to keep an eye out for any changes. How frequently will you be having labs?
Compared to many people a 10.0 hemoglobin level would be godsend.
Many people are in the 6.0 to 8 or lower range without continuous blood transfusions.
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 ?
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4 ReactionsHi, is it really MDS?
MDS and anemia are closely linked.
Your age could be important.
"Elevated hCG can be a benign finding in perimenopausal and postmenopausal women"
https://www.ccjm.org/content/88/11/635.
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1 ReactionThat is interesting. How long ago were diagnosed with MDS? I have found if you enter MDS in the subject box above many, many posts will come up. Also, the knowledgeable monitors will post info most often. You have already received one link to review.
I was diagnosed with MDS within a year of breast cancer treatment. I must say I did not know with some changes what came from what. Fatigue i had. Shortness of breath no. I am just one person, so others may have had this symptom.
@katgob
I guess I should’ve mentioned also that I am a male. I was diagnosed 4 years ago. My symptoms have always stayed about the same with some days better than others. I am currently receiving REBLOZYL injections every 3 weeks.
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3 Reactions@shoch1957 You described exactly how I feel every day.
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