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  #1  
Old Sat Nov 23, 2013, 01:11 PM
LindaM LindaM is offline
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My first post: Question about MDS and dementia

Hi everyone!
I am new here. My dad has MDS. I don't know much about the specifics of his condition because he hasn't actually told me that he has this. I found out through grilling my mom and she told me. Anyway, I guess they are monitoring him closely and making sure he is in good health. His oncologist/hemotologist doesn't think he would be a good candidate for the chemo/bone marrow transplant. So they are doing the "wait and see" technique. This dr diagnosed him based on a bone marrow test he had a few years ago (from a different doctor that he never followed up with), combined with his levels throughout the years. My dad is anemic, always has been, but has gotten worse over the years.

I saw him yesterday in the morning, and he seemed extremely fatigued and pale (I've seen him like this before, but it seemed more than usual). Last night my parents took a trip to the ER because my dad had temporarily lost his memory...about everything. literally everything. After her got to the hospital the doctors that were monitoring him said there might be some early onset dementia, and said he needed to see a neurologist. This doctor didnt know much about MDS but didn't seem to think that it was related. I feel like it is all related... it has to be. My dad is young...he's in his 60s. Rides his bike every day and is in otherwise good health (eats healthy etc etc).

Has anyone heard of dementia and MDS being related?? It seemed to me (I'm by no means claiming to have any real evidence of this) that blood flow to the brain could be a factor??? I don't know. His blood test levels were not far below the normal level. but his blood pressure was really high. Thanks for reading... I wish I had more concrete numbers to give, but I'm trying to respect my dad's process in not wanting to tell me yet. I am just loving him, being there for him, and praying for him... this is super hard though.
Thanks,
Linda
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  #2  
Old Mon Nov 25, 2013, 05:28 AM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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I haven't heard anything about dementia and MDS but have heard of "brain fog" being a problem, especially in the more high risk varieties of the disease. I know I experienced it when I was RAEB2. I think it's more likely when red cells are affected.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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Old Wed Nov 27, 2013, 12:47 AM
LindaM LindaM is offline
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Thank you

Thank you! I will look into that. He has some other appointments coming up with different doctors. We are just finding all of this out, so it's a little overwhelming to say the least. Thanks again!!
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  #4  
Old Sat Nov 30, 2013, 05:28 PM
Darice Darice is offline
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My husband started with NHL in 2001: early CNS involvement, numerous chemos (including intra-thecal methotrexate directly into the brain/spinal fluid), recurrences, surgeries, radiation, BMSCT 2008 . . . so he has the treatment-related MDS and is a higher risk level. There are so many mental issues with all of this . . . he definitely has the chemo "brain fog" mentioned, has occasionally forgotten my name for up to a week, goes into delirium with stress, temperature, and/or many pain meds, and seems to have some dementia going on. Yeah, I think it's all related in some way. If nothing else, the worry, stress, and exhaustion of dealing with MDS is enough to drive anyone bonkers. Throw in low blood counts and whatever treatment may be going on . . . I don't know that there is a real medical relationship going on, does the MDS cause the mental issues? but they sure seem to go hand-in-hand sometimes.
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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  #5  
Old Tue Oct 27, 2015, 03:19 PM
LindaM LindaM is offline
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Join Date: Nov 2013
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Update from 2013: Pancreatic cancer

I posted in November 2013 that my dad hand MDS. It turns out that he actually had Pancreatic cancer. Adenocarcenoma. And after we found that out "officially" in March 2014, he died in May 2014. To this day I don't know if he ever had MDS, but his blood work was consistant with it. His tumor was extremely fast growing and inoperable. Just wanted to get a piece of his story out there in case it could help someone...
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Old Tue Oct 27, 2015, 10:21 PM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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So sorry to hear this news Linda. You must be missing your Dad very much. My deepest sympathy to you and your family.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #7  
Old Tue Oct 27, 2015, 11:45 PM
LindaM LindaM is offline
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Thank you, I am missing him terribly. Losing him was life-changing in many ways. Some days are harder than others. I guess today was one of those days for some reason which is why I came here, I think.
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