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What Caused MDS in My Case?

Posted by statmatics @statmatics, 3 days ago

My doctor shies away from answering my questions about the probable cause of MDS in my case. I guess this is pretty normal for most doctors. My hemoglobin was up around 11 in January 2024, but by June 2024 it was down to 7 or 8. Now it gets as low as 6. In January 2024 I had a bunch of very stressful events, and I fell in the living room and suffered a lot of back pain (untreated) for 2 months. Do you think the stress and trauma caused the MDS? What are other possibilities?

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Mentor
Lori, Volunteer Mentor | @loribmt | 3 days ago

Hi @statmatics The causes of Blood cancers and conditions can be difficult to pinpoint. Many are caused by random mutations to a strand of DNA that starts the ball of destruction rolling. There can be genetic factors, behavioral influences known to be carcinogenic such as smoking, diet, environmental/chemical exposures, etc.. Most often, the cause of MDS is unknown. And really, it’s a moot issue…there is only going forward from this point.
I went through similar when I developed AML. My doctors weren’t trying to be evasive in my diagnosis. They (and I) simply will never know the precipitating factor that caused the radical changes to my DNA.

Myelodysplastic syndromes (MDS) are a group of conditions that interfere with your body’s ability to make healthy blood cells. In your case it appears to be red blood cells with the very low hemoglobin counts you’re experiencing.

You’ve most likely read articles and have gotten information from your hematologist/oncologist but I’ll toss a few resources in for a little reading material.
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
~~
https://www.healthline.com/health/myelodysplastic-syndrome
~~
https://www.cancer.org/cancer/types/myelodysplastic-syndrome/causes-risks-prevention/risk-factors.html
There are different forms of MDS and knowing the specific subtype will dictate the type of treatments. Are you currently on any medications to help control the symptoms of your disease? What happens when your hemoglobin drops so significantly; Do you receive transfusions? Have there been indications of blast cells in your bloodwork?

REPLY
1 reply
statmatics | @statmatics | 2 days ago
In reply to @loribmt "Hi @statmatics The causes of Blood cancers and conditions can be difficult to pinpoint. Many are..." + (show)
@loribmt

Hi @statmatics The causes of Blood cancers and conditions can be difficult to pinpoint. Many are caused by random mutations to a strand of DNA that starts the ball of destruction rolling. There can be genetic factors, behavioral influences known to be carcinogenic such as smoking, diet, environmental/chemical exposures, etc.. Most often, the cause of MDS is unknown. And really, it’s a moot issue…there is only going forward from this point.
I went through similar when I developed AML. My doctors weren’t trying to be evasive in my diagnosis. They (and I) simply will never know the precipitating factor that caused the radical changes to my DNA.

Myelodysplastic syndromes (MDS) are a group of conditions that interfere with your body’s ability to make healthy blood cells. In your case it appears to be red blood cells with the very low hemoglobin counts you’re experiencing.

You’ve most likely read articles and have gotten information from your hematologist/oncologist but I’ll toss a few resources in for a little reading material.
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
~~
https://www.healthline.com/health/myelodysplastic-syndrome
~~
https://www.cancer.org/cancer/types/myelodysplastic-syndrome/causes-risks-prevention/risk-factors.html
There are different forms of MDS and knowing the specific subtype will dictate the type of treatments. Are you currently on any medications to help control the symptoms of your disease? What happens when your hemoglobin drops so significantly; Do you receive transfusions? Have there been indications of blast cells in your bloodwork?

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Thanks for your reply, Lori. Especially your list of reading material.

You are right that my question is moot, but not completely. If I did something to bring on this trouble, I don't want to do it again!

REPLY
drawlings0803 | @drawlings0803 | 2 days ago

I’ve wondered the same thing. Last December my husband had open heart surgery. I experienced stress like never before. I thought ‘did that trigger the MDS?’ Also, I had chemo 17 years ago for BC & they see that & go ‘that’s what did it!’ But people get MDS who’ve never had chemo.
I think we want a cause and effect answer for it all to make sense. Thing is, that may never occur. It’s one of those things that happens to us & you just have to move forward. Like Lori said, it really is a moot point. But I totally understand your feelings! And how it can be very frustrating!

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