Hello @donnamae90. Unfortunately, fatigue can be a side effect of MDS if there is a decrease in the production of your red blood cells. They carry oxygen around your body and when their population is reduced, you can feel pretty sluggish.
If you’re new to this diagnosis of MDS (Myelodyplastic syndromes) here are a couple of good articles to give you an overview of the condition, how they are diagnosed and the possible treatment options.
My husband has MDS, been tired for a long time. He just stated his Arenesp shots yesterday to help boost his blood. Hgb got down into low to mid 8's. Praying he feels better with the new treatment. He'll go every 3 weeks for labs and a shot, if below 10. Praying all goes well for you.
Hello @donnamae90. Unfortunately, fatigue can be a side effect of MDS if there is a decrease in the production of your red blood cells. They carry oxygen around your body and when their population is reduced, you can feel pretty sluggish.
If you’re new to this diagnosis of MDS (Myelodyplastic syndromes) here are a couple of good articles to give you an overview of the condition, how they are diagnosed and the possible treatment options.
Hi @doriskay79 There are different types of MDS, based on how many types of blood cells are affected and other factors.
Depending on the type of MDS, the disease can progress to a fast-growing cancer of bone marrow cells called acute myeloid leukemia (AML). In the past, MDS was sometimes referred to as pre-leukemia or smoldering leukemia. Now MDS is considered a form of cancer.
We learned that MDS can be related to AML; but not necessarily. My husband has had MDS 5q deletion Dx’d seven years ago, the 5q chromosome is damaged, missing part of the structure.
His Flow Cytometry analysis sometimes reveals leukemia markers, but over a few years time the markers are inconsistent - sometimes the markers are seen, sometimes not; that’s so far with four Flow Cytometry tests. When MDS transforms or transmutes to AML, we’re told there’s no cure and very little meaningful treatment.
We learned that MDS can be related to AML; but not necessarily. My husband has had MDS 5q deletion Dx’d seven years ago, the 5q chromosome is damaged, missing part of the structure.
His Flow Cytometry analysis sometimes reveals leukemia markers, but over a few years time the markers are inconsistent - sometimes the markers are seen, sometimes not; that’s so far with four Flow Cytometry tests. When MDS transforms or transmutes to AML, we’re told there’s no cure and very little meaningful treatment.
Hi Lee, I recently replied to another post regarding your husband’s weekly Neupogen injections. Here’s the link: https://connect.mayoclinic.org/comment/1199389/
It’s important not to put the cart before the horse in this case, I think. From my understanding the 5q deletion isn’t often associated with progression to AML. And depending upon the form of AML and the possible mutations behind the leukemia, there can be some meaningful treatments.
In my case it was chemo and a bone marrow transplant. But a friend of mine, whom I met in my hometown while mentoring her through her AML journey at our local hospital, had AML without the most offensive mutations. She had 5 chemo rounds and has been cancer free for 2 years with no sign of relapse.
So don’t lose faith! It’s important to stay focused on the future and ‘not go looking for trouble’. 😀
Has your husband’s doctor been able to offer an alternative medication now that he’s off Revlimid?
Good to hear that 5q is not normally associated with AML. I stopped being so concerned after Flow Cytometry tests didn’t report it recently. We do stay focused on today as much as possible. He is getting 60k weekly Retacrit injections, and weekly Filgrastim for white cell. So far he’s able to have a fairly normal life, but is enormously fatigued and sleeps a lot. One day at a time here.
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Hello @donnamae90. Unfortunately, fatigue can be a side effect of MDS if there is a decrease in the production of your red blood cells. They carry oxygen around your body and when their population is reduced, you can feel pretty sluggish.
If you’re new to this diagnosis of MDS (Myelodyplastic syndromes) here are a couple of good articles to give you an overview of the condition, how they are diagnosed and the possible treatment options.
From Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
From Verywellhealth.com
https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548
From Healthline:
https://www.healthline.com/health/myelodysplastic-syndrome
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We also have many discussions with our members who have/had MDS. Here are two to get you started:
Anyone dealing with MDS and how are you doing?
https://connect.mayoclinic.org/discussion/anyone-dealing-mds-and-how-are-you-doing/
Living with MDS
https://connect.mayoclinic.org/discussion/living-with-mds/
There are several subtypes of MDS which will determine the treatment options.
Where are you in your MDS diagosis? Has your oncologist hematologist discussed treatments for you?
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3 ReactionsMy husband has MDS, been tired for a long time. He just stated his Arenesp shots yesterday to help boost his blood. Hgb got down into low to mid 8's. Praying he feels better with the new treatment. He'll go every 3 weeks for labs and a shot, if below 10. Praying all goes well for you.
Best of luck with the arenep. I understand their are a lot of side effects to deal with but of course everyone reacts differently.
I'm on my 8th injection of Aranesp and have had no side effects at all.
I was diagnosed with MDS/MPN in 2021. My hemoglobin was down to 8.2 this summer. It's only up to 9 now, but is holding steady.
Congratulations that sounds great
MDS isn’t that related to leukemia blood cancer?
Hi @doriskay79 There are different types of MDS, based on how many types of blood cells are affected and other factors.
Depending on the type of MDS, the disease can progress to a fast-growing cancer of bone marrow cells called acute myeloid leukemia (AML). In the past, MDS was sometimes referred to as pre-leukemia or smoldering leukemia. Now MDS is considered a form of cancer.
Here’s a link to the Mayo informational site with more information. https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
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2 ReactionsWe learned that MDS can be related to AML; but not necessarily. My husband has had MDS 5q deletion Dx’d seven years ago, the 5q chromosome is damaged, missing part of the structure.
His Flow Cytometry analysis sometimes reveals leukemia markers, but over a few years time the markers are inconsistent - sometimes the markers are seen, sometimes not; that’s so far with four Flow Cytometry tests. When MDS transforms or transmutes to AML, we’re told there’s no cure and very little meaningful treatment.
Hi Lee, I recently replied to another post regarding your husband’s weekly Neupogen injections. Here’s the link:
https://connect.mayoclinic.org/comment/1199389/
It’s important not to put the cart before the horse in this case, I think. From my understanding the 5q deletion isn’t often associated with progression to AML. And depending upon the form of AML and the possible mutations behind the leukemia, there can be some meaningful treatments.
In my case it was chemo and a bone marrow transplant. But a friend of mine, whom I met in my hometown while mentoring her through her AML journey at our local hospital, had AML without the most offensive mutations. She had 5 chemo rounds and has been cancer free for 2 years with no sign of relapse.
So don’t lose faith! It’s important to stay focused on the future and ‘not go looking for trouble’. 😀
Has your husband’s doctor been able to offer an alternative medication now that he’s off Revlimid?
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1 ReactionThanks for responding.
Good to hear that 5q is not normally associated with AML. I stopped being so concerned after Flow Cytometry tests didn’t report it recently. We do stay focused on today as much as possible. He is getting 60k weekly Retacrit injections, and weekly Filgrastim for white cell. So far he’s able to have a fairly normal life, but is enormously fatigued and sleeps a lot. One day at a time here.
-
Like -
Helpful -
Hug
2 Reactions