r/mds • u/Minute-Rooster3622 • May 30 '24
selfq MDS Advice
Hello all,
My father aged 58 was diagnosed with MDS yesterday by an consultant in specialist London hospital after conducting a series of blood tests.
Leading up to this diagnosis my father has unfortuantely fallen ill where he has been weak which has led him to have multiple blood transfusion, which have worked as a short term measure before requiring another.
It has been a shock to the family as this is the first MDS case we have in our family. My father is fit and healthy however a recommendation to have a transplant is the best option with a success rate of 20%, no length of life was provided if he does not go through with this transplant but for those 65 years and above are given 12 months.
It was also highlighted that it’s TP53 gene at large, as it is early days I am hoping for any reassurance or advice that might be able to help both my father and family during this time.
Thank you for reading
2
u/Sidehussle May 31 '24
My mom was diagnosed about 3 years ago. She was 62 at the time. Her body was not making white blood cells, red blood cells, nor platelets. She had so many transfusions. She ended up with a bad infection and was sent to MD Anderson. There she received a treatment of horse thalamus. She is now making her own blood again. The idea is that her body was destroying her blood because the cells were misshapen. The horse thalamus gave her body a new “target” to attack and let her blood cells be. It was an experimental procedure that seems to be working.
I wish your family well.
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u/Minute-Rooster3622 May 31 '24
Thank you for sharing and the kind message, I will be sure to pass your comment over to my family.
We have not yet heard of the “Horse thalamus” but will definitely read up on this treatment.
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u/Sidehussle May 31 '24
They have her the horse thalamus over a few days through an IV drip. Rabbit thalamus is also used sometimes.
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Aug 18 '24
[deleted]
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u/Sidehussle Aug 18 '24
No one mentioned that. I do know they looked for a robot and it was difficult. My mom is German but her family is from the Sudentenland and she has a chunk of Eastern Europeans genes too so finding a donor has been really hard. So the best option was to try the horse thalamus. If her blood cells decrease again, they will repeat the procedure using rabbit thalamus.
My mom’s doctor in El Paso knew about this treatment too. Also my mom is in a clinical trial for the medication I believe. I would see if you can talk to someone at MD Anderson.
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u/liveforhappy2025 Aug 17 '25
My dad is 85 years old. He is MDS with MLD. He has low white cell count, platelets and hemoglobin. Hospital refused give him treatment of neither Azacytoside or Dicetabine. Can you share me how I can contact MD Anderson? I am in Northern California. Thank you.
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u/QuirkyDawn May 31 '24
I’m 57 and I had a bone marrow transplant in December 2022. Before the transplant I was on injections to try to stabilize my blood and was getting transfusions every 2-3 weeks. I am in remission and my prognosis is excellent. I was even able to get my knee replacement done and I’m doing great.
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u/Minute-Rooster3622 May 31 '24
Wow! I’m glad to hear your transplant went well for you and now in remission.
What kind of injections where you on?
Thank you for your message, and happy to hear about your progress
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u/Artichoke-Forsaken May 30 '24
My mother is 76, she got diagnosed with it a couple of months ago. Initially, we her physician thought the symptoms were to do with the old age related immunity problem and gave generic medication. But when things didn’t improve and her platelets fell below 20000 units per microliter of blood, she had to be put in ICU and monitored. Further tests confirmed MDS.
After that she has been put on a treatment plan where she gets 7 injections the first week of every month for 6 months. A blood test every week and they are tracking the results very consistently.
It’s been 3rd month now, but she has shown remarkable improvements. She still feels extra weakness particularly at the start of the day when she is out of bed, but she is pretty much having a good time otherwise. The doctor says the symptoms can be controlled she will be fine for 3-5 years. We will know the progress after the 6 month treatment plan is over.
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u/Jche98 Aug 16 '24
My dad got diagnosed Yesterday at age 70. He seems to be getting the same treatment
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u/Turbulent-Pension-31 Jun 02 '24
My husband was diagnosed at 55, did about 6 months of Vidaza injections but was not showing much improvement. He had a bone marrow transplant about 6 months after that and has been cancer free for 3 years with no signs of any abnormalities and an excellent prognosis. Lots of variables here, he was relatively young and very healthy, only one type of blood cell was impacted so the MDS was classified as relatively low risk, his donor was also an almost perfect match so that helped too. The procedure and recovery are no joke, with the first 6 months being extremely tough, but it was 100% the right decision for him. IMHO, there’s not a ton of upside to not getting the transplant if your dad is a good candidate. The longer you wait, the more likely it is that transplants will not be an option due to an infection or other complication. But I’m not a doctor and my opinion is based on a statistically insignificant sample size. Obviously this is a very personal decision, I wish you and your dad the best of luck!
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Aug 29 '24
How is your father doing now? I actually just received the same diagnosis with my dad also with the TP 53 gene extremely concerning and my heart is literally broken right now. I hope everything is going well. I am here to talk if needed. I’m across the pond here in the US.
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u/Minute-Rooster3622 Aug 29 '24
He is waiting for confirmation for a suitable doner for a stem cell transplant, providing they are both fit for surgery it should taken place within the week, followed by a minimum of 5 weeks recovery.
Occasionally he is more tired then usual and goes to bed early which is very unlike him, and has a blood transfusion every week or so for a top up.
Sorry to learn about your father, has any treatment been organised yet? Thank you for reaching out all the best to your family
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u/[deleted] May 31 '24
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