MDS and cognitive decline

Hello @bdglass, @marco88, @kgerbitz and @dabls6
I did a little research online to see if there were any articles related to MDS and cognitive decline. There are several and I posted links to the two I felt were most informative.
https://pubmed.ncbi.nlm.nih.gov/15973668/
https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.22151
There is evidence of a relationship between the anemia associated with blood disorders and the lack of blood supply to the brain. When hemoglobin numbers are low the brain doesn’t receive the normal oxygen supply which can result in cognitive decline.
Have any of you required blood transfusions? Did you notice a change afterwards?

I have not had transfusions. But I’m the last two weeks my count went from 7.9 to 9.2 and I feel much more like myself, mentally and physically.

Let us know what your dr says. I see mine soon and will also ask, but I don’t get much insight from him. Every answer comes down to “following the insurance protocol” . And it may be there’s nothing that can done about it.

My husband has just been diagnosed with MDS after having JAK2 for about ten years. His memory and cognitive skills have been in noticeable decline for about four yrs. This year, he became extremely anemic and his cognition seemed much worse. After a transfusion, he has improved in energy and cognition both. Unfortunately, his hemoglobin is starting to decline again and his oncologist is reviewing various cancer treatments. I also am not sure if the cognitive decline has been due to the cancer or the anemia and if treatment for MDS can help all symptoms. He is in denial about all his health issues, and it’s a real struggle to work with him on going to doctor visits. Anyone with similar experiences?

osm- Did you read the 2 links Lori posted above? I know Mayo has many published studies. I had MDS but it had not gotten to a severe or noticeable decline until i choose a transplant. I carry the Brca2 mutation and a TP53 mutation. When your husband was first diagnosed, how did he get to seek the testing? What have you been doing to create the conversation for another dr consult? What i do understand is denial lives in many of us. Do not talk about it and it is not there. Is there a medical person that is aware of his reluctance to go to an appointment?

Thanks @katgob. The second link article does show a strong connection between anemia and cognitive decline. It is still not clear if the cause of the anemia is the cancer itself and/or the hydroxyurea he’d been prescribed for over a year. Maybe both. We need to wait and see, although his hemoglobin is on a downward trend again. That may be the reason for the memory loss and behavioral issues. I’m so sorry you have MDS. Are you saying the transplant made it severe? In my husband’s case, the oncologist managing the JAK2 disorder found his JAK2 cancer had evolved into MDS from a bone marrow biopsy. We also visited another oncologist for a 2nd opinion and are waiting to hear his conclusions. We will be speaking with this doctor over the next few days, separately. I will again mention the reluctance to go to appointments, which was already evident during the consult. Even with a medical person aware of this reluctance, I don’t see a way to force a visit, and later, to force unwanted treatment. Every day is a new negotiation, a new positioning of facts. He is feeling better since the transfusion, and so lives in a magical world of denial - for now.

My transplant worked beautifully. I did not have GCHD but participated in a research study to prevent GVHD and so far, i have had none. My sister lived in the magical world called denial. Did not get a genetic test and had cancer 2 years after me. The denial river runs deep.

How long ago was your transplant? I, too, have the TP53 gene, and I feel like I have a ticking time bomb in me. Right now, I'm not at the point where I can get a transplant, but that day will come.

That your transplant worked beautifully is awesome to hear. Sorry to hear about your sister. It's very tough being on the outside, hoping to convince a loved one to look at the world in a different, albeit difficult, way.

I’ve been noticing it it with my husband who was dx with autoimmune aplastic anemia. He has had ATG, and blood and platelets every week since May and nothing is working. He was on Cyclosporine , but that hard on his kidneys. He is now on Tacrolimis and high dose steroids and that’s when I started to notice the hearing issues and occasional not comprehending what I was saying to him. He keeps calling oir dogs and his friends by the wrong name.