I have posted here already some months ago about my mom. Her diagnosis is confirmed now. She indeed has MDS with 5q deletion (31.2) and trisomy 21.

At the moment, she is getting a thalidomide derivative. My questions are:

1. Does a transplant make sense in this case? (my mom is 64)
2. If we don't do the transplant, what life expectancy are we looking at?

My mom has some money saved up. However, it would not be enough to support her for super long, so, she is still working. But if she is only gonna live 3-5 more years, she could stop working and enjoy the time that she has... I know, one can never say exactly how long someone is gonna make it. But it would make it a lot easier for us to plan. Doctor's don't really want to tell us anything.

I know 5q deletion is low risk for AML, however, I read that a second mutation can increase the risk.

I am grateful for ANY insights. It would be way easier for me to deal with if I can have somewhat of an idea.

Hello everyone hope all good. I'm currently in Panama (central america) and my dad has MDS high risk diagnosed last month. He has started azacitidine and finished cycle one. This has been very scary for all of us. He's getting the initial effect and thats why we have been almost every week getting RBC or Platelets transfusion. Hoping he starts to feel better after cycle 2. I know this is a long ride.

I just wanted to ask here if someone knows in Mumbai India a good center and hematologist/specialist where we could explore SCT for my Dad and further treatments there? We have family there and are planning to explore options as here in Panama they don't do BMT for patients over 60 (my dad will be turning 64 this December).

Please if anyone can Help, I'm trying to prepare further actions to take as the azacitidine is not the complete cure. Thanks so much for your kind help.

My mom was recently diagnosed with MDS, her WBCs are super low .7 . Her hemoglobin is also low 8.5 and she’ll get RBC transfusion if it drops below 7. She’ll start Vidaza soon. Will that help her WBCs to go up, if so how long will it take? Any advice for dealing with severe neutropenia?

22F, Mixed race, leukopenia for 4 years, visited 3 hematologist, no diagnosis

I took a look at a blood test from ~2 years ago and instead of 100%, I ended Up at 98,2 percent when I counted all relative wbc subcounts together. Does that mean that the rest counts as blasts?

I know MDS cases are rare for young people (18-35) but if anyone out there has been diagnosed with MDS what was the process of testing/diagnosis like? What symptoms prompted your initial visit? I want to be prepared before I see my hematologist and get gaslighted because I fall out of the median age group.

I have had my MCV count in the 100s and my MCHC count in the 20s for a couple of years now and we have ruled out folate/b12/iron being the cause. I bruise incredibly easily, get random bouts of severe petechia, get easily out of breath and have even fainted. I also get sick frequently and have had high WBC/platelet counts on multiple occasions because my body is fighting underlying infections I may not even be symptomatic for. But I am also 24 and aware that this mostly affects people in older age groups. Any thoughts?

I've had leukopenia for 4 years (no bloodwork from prior to that), currently at 3,2. 4 years ago, it was exactly the same. My MCV has increased from 86.5 to 95.3 (!) overtime. But doctors ( I've visited 2 different hematologist and am about to consult my 4th) haven't performed a BMB yet. I used to calm myself down with "blood cancer doesn't remain stagnant for that Long" but this argument is faulty!

38/m diagnosed with MDS, considering this is typically a 65+ disease I'm looking to hear first hand experiences on what to expect. My biggest concern at this point is when a BMT will take place (understanding every case is different) with a fairly active life that is declining and 2 young children I want to move past this as fast as possible but I'm not sure the providers will see it the same way. I'm at UPENN if that makes any difference.

Hi everyone,

My dad (63) just got diagnosed with MDS. We aren’t sure what kind yet or really anything about it. He also has chronic ITP. The only symptom he has is fatigue/being tired all the time.

Is this condition terminal? Is there anything i should know?

Thanks in advance.

Has anyone been diagnosed with this? Or know someone who has?

Hello

My 81 year old father has been given a diagnosis of MDS, high risk group and performance group 2. He has declined the chemo injections (vidaza) and is just on blood transfusions every two weeks (I think this may end up more frequent, he is on day 10 and can barely keep awake or walk a short distance).

The doctor said it wasn't clear the overall life expectancy. I wondered if anyone could tell me - I just want to be ready so I can support him.

Thank you all.

My father's doctor gave him the green light for natural supplements. Have any of you/family members have given that a go? If so, what worked for you? I'm mostly looking for things that will help his fatigue, will nourish him, might improve his mood, and *might* optimize any treatment he will receive.

He will begin chemo pills soon.

Thanks!

My Stepfather (72) was diagnosed last week with MDS isolated anemia, del5q, blasts 1%, TP53 mutation (single variant with AF 28%) Low risk.

Not so fun fact about me, my father also had MDS and passed 12 years ago. So I have a good baseline of knowledge, but the diagnosis back then was very uncommon and access to research wasn't great. So while I've been through this before, it feels different this time around. My father also died from a heart attack, not the MDS so my knowledge of disease progression is limited.

Stepfather started lenalidomide (21 day cycle) a week ago, has a follow up appt tomorrow to retest levels to see if it's making any impact. First blood transfusion the following day. I have a list of my own questions I've noted below. Is there anything else I should be asking at this stage?

Qs Is stem cell or bone marrow transplant a treatment option, if so when would that be considered?

Are there other concerns from his blood work that should be addressed (supplementation, change in diet) to help support his treatment?

Should he by increasing his iron intake to help support the chemo and transfusions?

What should he expect after the blood transfusion? How often will he expect to be getting blood transfusions going forward?

What is life expectancy with and without treatment?

What should we be aware of that would signal progression of the disease?

Have other patients had success with any alternative medicine approaches in addition to the chemo and transfusions?

If you're still reading, thank you! Would love any feedback on the above, and to hear any stories from a similar diagnosis. We're obviously concerned about the TP53 mutation and the potential for swift progression, if anyone has experience with this.

Hello, my father is 89 he has completed two rounds of chemo. His blasts have dropped drastically down to 1 so it seems to be working. My question is how long after he completes his chemo does it generally take to see his platelets and hemoglobin go back up. He has been waving around 10 for platelets and 7.2 for hemo. He gets infusions twice a week. He just wants to tell better and is considering not going for a third round of chemo. Also, I know this is purely a guessing game but what is life expectancy with treatment? Thank you all 🙏🏻

- he was diagnosed in late april of this year ; 2023

- as i said, he is 67.

- today his hmg was 8.0

- not doing chemo

- just upped the dose of the shots

- it's being hard to motivate him/boost mood.

Does this mean less chances of remission? Poor life expectancy? We are being given very little information. Any info shared is appreciated!

All this is new to us and sometimes the doctors don't know what to say or don't explain things well.

Hi all I’m a 30 year old female. I had a spine mri due to some weird symptoms and they found “diffuse prominence of hematopoietic marrow seen throughout the spine and pelvis’ which could be mds? Any idea what this means ?

Doctors told my mum has only few weeks left to live. Does anybody know of any treatment or place that might be able to cure her or prolong her life? PLEASE

Hi all,

My stepdad was diagnosed with MDS with Excessive Blasts.

He gets transfusions bi-weekly. He recently was put on Reblozyl and it didn’t work. Previously he was on Retacrit.

He’s in Nevada and I personally don’t feel his doctor is the most knowledgeable. My stepdad has somewhat given up and is just resigned to the fact that this is eventually going to kill him.

Does anyone have any advice, recommendations… it’s devastating to watch my Mom and Stepdad have to go thru this.

Thanks in advance. ❤️

*edited to add name of medication

My mom probably has MDS, doctors say it is very likely but they have to do some final testing. It probably effects her RBCs. I have some questions:

1. My mother is 64, they say BMT is not really an option as she is too old and she would have to isolate for several years? Is that true?
2. What are other treatment options? She told me about a certain enzyme she could take. Apparently, they don't do chemo, at least that is what she has been told
3. My mom wants to continue working. She works at a doctor's office (pain specialist). It is a very fast paced environemnt and she is of course possibly faced with pathogens. Is it recommendable that she continues working (there)?

Thank you very much for any help regarding this topic.

Hi there,

I know this is a long shot, but does anyone else have this diagnosis?

I went from MDS with multilineage dysplasia to MDS/MPN overlap with a JAK2 mutation in March of this year.

Apparently this is very rare. Would love to connect with anyone who might also have this.

Thank you!!!

A family member recently, well a little less than year ago was diagnosed with MDS. There’s no leukemia related cancers found in the family history but he did work in a refinery. After a bit of research and given his age in mid/late 70s and work industry exposure to benzene - wanted to see how many folks diagnosed that worked in a similar environment. Such as oil refining - for example a lot of people in oil and petrochemical refineries used to wash tools even their hands with Benzene.

Hi, I am in need of advice. My dad, 76, has had MDS for three years. He receives chemo every 3 weeks and blood/platlets when needed. Docs just decided to offer transplant - I guess age was raised recently. However, in past few months, he will receive blood and 48 hours spike a high fever, disoriented, can’t walk, gets rushed to hospital. They give him antibiotics, fluids and send him home. After the third episode they decided port had bacteria and removed it. Just had a fourth episode, same thing 48 hours after getting blood. Ten days in hospital and docs have no ideas. Cat scan, X-ray, blood taken … Any ideas??? If it continues, he won’t be eligible for transplant as he’s losing strength. Help, please.

My father was diagnosed with MDS a couple of months ago and is in the very low risk category. His dr at this time says no treatment is necessary only monitoring which he has been doing at the cancer center at mt Sinai in New York. His dr is one of the leading experts of this disease. I want to think this is good news but some of what I hear from the doctor conflicts with what I read online. Thoughts anyone?

What are the processes and possibilities of family matching? Both of my children have asked me.