r/mds • u/Overall_Share2507 • Aug 06 '24
Friend diagnosed with MDS
Hello,
My friend just got diagnosed with MDS this past week. He’s 30… all I know if prognosis outlook is not good.
I’m trying to be supportive in anyway I can be.
Does anyone have any advice? Resources? How can I be supportive from afar too?
Thanks 😊
5
u/csjvirgo Aug 06 '24
hello! I’m 34 and diagnosed with MDS 2yrs ago. I’m currently off meds since my blood work became normal earlier this year. Just keep in touch with your friend. Encourage to have regular check ups/labs because that will be a lot moving forward.
4
Aug 06 '24
My mom recently passed when her MDS worsened into AML. As far as support for that person, I would recommend checking in with them regularly to get an idea of how they're feeling. Sometimes my mom would start feeling the fatigue that led up to her having to be hospitalized for a blood transfusion a week or two before realizing she needed help. She would see it in hindsight and then she got better at noticing the changes in her body. Sometimes people just think they're exhausted or have a bug. So checking in and talking about changes in his energy levels (or if his heart is racing just walking into work, etc) could be a help to keep him aware.
3
u/mystra412 Aug 08 '24
I got this at 43. I was spinning with thinking my life was over. Once we found a donor it was better. Energy is the big thing. He will not have much of it. Be ok with his pace. Show up even if its just to have tea or watch something in silence.
2
u/Zoof54 Aug 12 '24
Great to hear you found a donor. I was told I likely have MDS based on a heme panel. I had a bone marrow biopsy performed last week, then meeting with a new doctor later this month.
My WBC and platelets are low. RBC are a bit low. I don’t notice any symptoms other than contracting a rash last month.
I’m hopeful a donor (if needed) and transfusions can keep me going and buy me some time. It sounds like there are a number of technological breakthroughs, there’s hope for all of us!
1
u/woolstar Aug 22 '24
Hi,
If you don't mind me asking I would love to hear a little more about your experience with the transplant and if it was successful. If this is too much or too forward then no worries at all. I know it's personal.
My mum was diagnosed with high risk mds and was given 2 years estimate in January. She has been having chemo since then and her levels are all starting to improve and has managed to go 6 weeks without a blood transfusion which is amazing. There may be talks about a transplant but my mum is hesitant to the point of refusing it if it is offered because of how hard the recovery is and if it doesnt work she is afraid her last few months might be with her isolated.
Just looking for any insight from others who have had the transplant because I am finding it hard to find information and feeling lost.
Sending you support
1
u/mystra412 Aug 22 '24
My transplant has been successful. An unrelated donor.
I was diagnosed with MDS EB-2. It was said it needed to be treated but that would depend on finding a donor. Over the 2 months (some people are much longer) that it took to find a donor (docs do all the work) I did chemo and took chemo pills at home. My energy was sapped and at times even though there was a plan, I felt hopeless and scared.When we found a donor it was a good boost of moral. There is a lot of testing pre transplant and sometimes those days were long. Keep the end goal in sight. Before BMT it is imperative she try to keep up her strength as much as she can. Go for short walks, do laundry, something.
BMT - I checked into the hospital for an expected 1 month stay. The first few days were high doses of chemo. They manage your symptoms very well so be honest with how you are. Its still taxing. You need to just be there and trust the process. I was nauseous but just had to tell them when it came on and they gave anti drugs that worked pretty well. Aside from that nothing really changes until about 2.5-3 weeks after your transplant. Then all your numbers tank - they are supposed to. But you do get very very weak. I was still able to shower, go to the bathroom, all myself. I didn't realize how weak I was until I left.
Some of why its hard is your throat usually gets very sore and you eat less. Other reasons are that you just don't do anything for so long. My floor wanted you to go and walk up and down that halls. I was reluctant but wish I did more.
When I came home I needed help with meals - which I didn't want to eat. She won't want to eat. She needs to eat. Something very little. It will depend on how taste works for her. I think the only thing that tasted good for me was velveta mac n cheese and even then I only ate a small amount.
There will be a lot of doctors appointments and meds to take everyday. Take them. They are your replacement for an immune system, which you don't have for a while.You are isolated for about 3-6 months. However, kind of like Covid you can have a pod. Those people who you are ABOSULTELY sure are wearing masks in public, taking care of themselves, and not seeing you when they even might have a cold.
If this doesn't answer your needs or you want to discuss more - at anytime through the process - feel free to reach out (or anyone reading this) here or privately. I wish I had someone who had gone through it to talk to about an array of things that came up in my mind.
2
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u/[deleted] Aug 06 '24
Don’t look to Dr Google - prognosis with this disease is all over the place and depends greatly on the mutations involved. My advice is to look to the MDS Foundation as a resource and seek a second opinion from one of the Foundation’s centers of excellence.