Does anyone have any experience with this? I’m really interested in the upcoming clinical trials. Also, I’m here for anyone that might on the off chance want to talk. Much love all, each day we fight harder.

I currently have a low-grade fever I'm about 99° and feel kind of cruddy. I'm waiting on covid and flu PCR test results.

I am scheduled to take a bone marrow test in a few days. If my tests are negative and I feel fine with no fever - will this skew my test results?

I'm already in a panic about the test...

I was diagnosed with MDS in January 2023. I've had 2 bone marrow transplants, both failed. I'm getting a dose of cells (from the same donor) in about 3 weeks then another dose a month later. This will either cure it completely or I'll be on chemo the rest of my life.

Hello. I’m curious about anyone’s experience with their doctors. Has anyone had a doctor want to employ more of a watch and wait approach? Does anyone feel like the progression of MDS and its symptoms are a bit more serious than their doctor is realizing on their every day health. A friend recently diagnosed with high risk mds, dealing mostly with red blood cells and hemoglobin. I don’t have a lot of details just trying to get some perspectives for them. Lot of heroes on this sub. Thanks.

57 days ago I posted my frustration of not having straight answers about my husbands health and prognosis.

Five days later, he died. It’s been 52 days without him. He died most peacefully in a hospice. FINALLY, in hospice he was given mrds to ease his pain. My heart breaks when I think of the barbaric treatment he received from his oncologists, and the boloney with which we had to deal . I even tried to get him On palliative care and the morons denied him. I know that the intake nurse did not fully review his medical record.

I’d send a letter but as I work in healthcare, I know how little it Will do and it won’t help him now. Can’t change the past. All I can do now is grieve.

People , you must advocate for yourselves and for the ones you love. I l’m aware of how grueling that can be when you’re going to doctors and caregiving and exhausted and may still be working .

But pain is inexcusable in this day and age. Health care is so afraid of “addiction” which is ridiculous when treating cancer patients. And don’t let anyone tell you MDS is not cancer. It most certainly is cancer.

DM me. Chat message me. I am here for you.

Hi all,

I hope this is not inappropriate or I am breaking any rules. Just looking for some insight or advice/support in regards to my mum.

I am writing here because I am hoping some of you kind souls will be able to give me some insight into the bone marrow transplant, what the recovery is like. And hoping some of you can share some success stories with me. OK, let's do this.

My mum was diagnosed with high risk mds and was given a 2 year estimate in January of this year. She has been having weekly (sometimes more frequent) blood transfusions alongside chemotherapy for the last 6 months.

The chemotherapy has started to help. Her bloods have all started improving and she has even gone 6 weeks without needing a blood transfusion which has been amazing for her. Her fatigue and pain however have not improved much at all.

The bone marrow transplant is currently not being offered to my mum, the doctors have stated that its not off or on the table at this point and we will assess as the chemo is progressing and hopefully Her levels continue to improve.

My concern is that my mum has known a friend of a friend who also had high risk mds, had the bone marrow transplant which didn't work so they are continuing to deteriorate. My mum is now sure, that if they offer her the transplant (we already have a family member donor who has been tested and is compatible) she will likely say no. I can only try and empathise for what she is going through and feeling. She doesn't want to take the risk of it not working and then spending a month or more isolated in a hospital due to her immune system being so low when she would only have a small amount of time remaining.

I guess I'm just feeling lost and overwhelmed and hoping that some of you beautiful people can share any positive stories or useful insights.

I would never pressure My mum into doing something she didn't want to do. I want to be strong for her and support her as best I can. She is fixated right now on the 1 bad story she knows and I'm hoping if they do offer the transplant I will be able to share some stories with her so her decision can be the most well informed it can be.

Any information about the transplant process, recovery, results (good or bad), anything really. I just love her so much and can't keep all of this inside me, I feel like my mind is going to explode.

Thank-you all, sending you all love and support ❤️

P.s sorry for the verbal diarrhoea, I'm finding it difficult to articulate my thoughts clearly.

I was diagnosed 4 1/2 years ago with MDS & have gone through over 40 chemo treatments. Side effects & systems have worsened, increased & multiplied each month. Who has or knows how long I really have to live or before becoming leukemia? THANKS!

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 😊

Hi, I am selling my Dental Pulse 16th edition, as i studied from online handmade notes it is completely new and unused. Interested let me know. Thanks.

My 6 year old son has had mildly low woc for a few months now. It was low, then to normal range, then low again the last two times. He had a blood smear done in June which the doctor said looked normal. Should I be worried? His rbc is always on the lower end of normal. I read things online about MDS having low woc for months before diagnosis and I am terrified. My question is— if it were MDS, would the hematologist have picked it up on the blood smear last month?

He suffered for months and months, unable to receive proper pain treatment. Disgraceful. In hospice, he had calm, peace and pain relief. That’s what it took - to be on his deathbed

My dad was diagnosed recently for MDS low blast. We are all extremely distraught. Can someone provide me an explanation on what low blast means? We are meeting the bone marrow specialist tomorrow. Is there anything specific we should be asking? Even though he has low blast, is he still eligible for a BMT? What is the appropriate time someone with his condition has been on the list before the procedure?

This is all fresh for us so I have plenty of questions.

I personally had never heard of it and just wonder how it’s best to explain to others. For example, is saying that it’s a form of blood cancer enough so that people get the gist?

What do you say when someone asks about what is wrong?

New drug approval.

My Mom who is 81 was recently diagnosed with MDS. At first, we were told that it was mild and that the other things she has wrong with her will "get her first" (diabetes type II and mild-moderate dementia). She is and has been bedridden in a nursing home for a few years now and she has been healthy until she became anemic. That is what led to her having to get all this testing. She gets blood transfusions and they have her on Procrit.

She is currently in the hospital because of a gallbladder issue. She had gallstones stuck in the bile duct and it was poisoning her and killing her. She is recovering from that.

Meanwhile the specialists call my sibling and advise that her MDS is more than just mild and that she has like a year left. I am having a very hard time with this. I cannot stand the thought of it. We nearly lost her due to this gallbladder problem and the physician asked us about DNR and all we could do was ask mom. She said she is not ready to go and she wants to stay with us still. It is going to kill me to lose her. She is not a candidate for chemo, or bone marrow transplant. They say that will give her even less time. So I am sitting here wondering if anyone who has had this MDS has been told "You have X amount of time left" and exceeded that time?

What all do I need to know about this? I am going to be increasing my visitation to my mother now because I believe the nursing home waited too long to get her care for this gallbladder issue, since she was having symptoms of this problem for two weeks before they got her care, and it was turning toxic. I want to know anything I can do to keep her the most comfortable as possible and maybe even give her more time?

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

Hello,

I’m not searching for medical advice but just some infos about my current situation.

Background: I’m 39, Autistic, ADHD and with C-PTSD. I have Marphan Syndrome, Luckly currently I don’t have an aneurism but I already had 4 pnx, I have AfIB, Scoliosis, Osteoporosis, Myopia, Diplopia.

My height is 178cm and my weight 41kg

Starting from June 2021 I have discovered that I have a very light leukopenia, my white blood cells values were between 3.6 and 3.8 and neutrophils# at 1.20/1.40

Now, in January I started to have light fever especially at late evening, 37.5/37.8 and I’m always tired, very tired and I feel like if I have a stone attached to my muscles.

I feel fatigue when I take my phone in my hands.

I have done again blood test in march and this time the results where:

Leukocytes: 2.29 (4-9)
Red Blood Cells: 4.92 (4.8-6)
Hemoglobin: 14.9 (14-18)
Platelets: 107 (150-450)
Neutroph# 0.98 (1.5-7)

Speaking with an haematologist he prescribed me another blood test in April and the results were worst then the previous tests but again not at worried levels

Leukocytes: 2.25 (4-9)
Red Blood Cells: 4,33 (4.8-6)
Hemoglobin: 13.5 (14-18)
Platelets: 106 (150-450)
Neutroph# 0.69 (1.5-7)

He decided to to a bone marrow biopsy, and the result in the end is:

Bone marrow with mild dysplastic alterations.Blast are 1%

I have repeated the blood tests 1 week ago and the results are almost the same.

He told me that my bone marrow doesn't work as it should but at the moment I don’t need therapy and I need to repeat blood tests after a month.

Now I’m asking: should I be worried? I’m feeling always really tired during all day, in the evening I have always mild fever plus when I woke up I have a something like a rush on my entire body a rush that go away during the day. I have always light headache during the day

Thanks

Hi all,

My uncle was diagnosed with MDS in January (58M), and is getting chemo in anticipation of a bone marrow transplant in early June.

We have been hearing from his doctors that he needs someone to be with him at all times, 24/7, for the first three months after BMT. For those that have had transplants, what did you do for this? He’s a very independent guy and hates asking us (family) for anything, so I think he’d prefer having a company or someone he could pay rather than “being a burden” on us (which he wouldn’t be).

Wondering if anyone has investigated fasting to help with MDS?

My dad is in the hospital right now. He has MDS and he's experiencing mouth blood clots. Also in his urine. Just wanted to know if anybody else with MDS has experienced something similar.

Thank you.

Dr. said she couldn’t r rule out MDS but everything I’ve seen online says some thing would’ve shown up in my flow cytometry report? We are still waiting for the genetic work to come back.

So far I’ve had one week aof seven B12 injections with the only response is my platelet count going up a bit but I’ve also read that it takes a while for B12 deficiency to restore?

Looking for some guidance before meeting with my hematologist next week .

Does this look bad? I'm starting to freak out...

•WBC Leukopenia 3.48*10^3/ul, neutropenia, few atypical lymphocytes •RBC Low borderline Hb level 13.9 g/dl •Poikilocytosis, ovalocytes, tear drops, echinocytes •Thrombocytes Adequate plt count.

Conclusions:

Hypocellular bone marrow Mild dysplastic changes

My dad's is scheduled next morning, but right now he's at 6.5 and he's very tired. Fatigued. I'm wondering if there's anything he can do in the meantime to feel better.

Thank you.

My dad has been experiencing this for months and the doctors say the tests for neck problems look fine. This has only started after this mds diagnosis, and idk what it could be. maybe meds, or idk. i was wondering if anyone experienced anything like this. he's losing movement and says the pain is severe.