Living with MDS

Hello. I was diagnosed with MDS (iso 5q deletion) 3 1/2 years years ago at age 50, and my blood results were a bit off for 3 years before that. I'm also on "watch and wait". Currently I'm moderately anemic and mildly neutropenic, but haven't needed treatment,and live a pretty "normal" lifestyle. I just get tired. The haematologist is not really able to give timeframes, but if my haemoglobin drops below about 80 she has said I'll be given blood transfusions as needed and started on lenolidamide to stabilise red cell count. I'll need an allogeneic SC transplant down the track. I understand that a number of different factors play into how quickly MDS progresses, and individuals are also different. Initially I was very anxious, but I've learned a lot about living one day at a time and being very thankful for each day. Any long term planning is quite difficult and seems a bit futile. Wishing you all the best.

Thank You for sharing I am just wanting to understand more of what to expect.
I too get tired and have Neutropenia and low wbc count. I also get irritation on my tongue and occasional rashes that cause no itching?
Can anyone relate?

Hi - One thing I learned early on is that there is no "normal" for MDS. I am 64 and I too am on watch and wait since 2020 (but 2nd and 3rd opinions said it's been since 2017). I am low in all 3 blood lines, and, thankfully, have no symptoms. I get checked every 3 months, unless something is lower than it usually is for me, in which case I will have a check after 2 months. I try not to dwell on the what-ifs, but will usually get a little anxious on my check-up days. I'm trying to exercise and eat healthy foods so I can be in the best health when/if my SCT comes along.

Treatment will vary depending on your symptoms, and on what numbers are off and by how much. Sometimes it's transfusions, sometimes medications to bring up cell counts. Again - there is no "normal". It's a crazy disease!!

I don't really understand MDS. I get awfully tired almost every day and fall asleep reading or crocheting. I can't walk myself out of it, so I stop what I am doing and lay down. My platelet count runs near 20,000. As you can see it's awfully low. This has only been going on since December 2020. So far can't get me stabilized. I will be on a new medicine this week for a test run to see how it works. Itchy skin, dark big bruises mostly on torso, legs and arms. Thats funny, what body part is left.

Hello @momz @nbadry @rrivory @honeymae. I know that you’ve all been diagnosed with a blood condition called MDS or myelodyplastic syndrome. Some of you are still in the ‘watch and wait’ period or a kinder term would be active surveillance, where you don’t require any treatment. But because the bone marrow isn’t functioning properly, you may already start feeling some of the symptoms of your bone marrow not turning out healthy blood cells. I thought it might be helpful to give you some articles to read which really help spell out the conditions of MDS in an attempt to answer some of your questions about why the wait for treatment and what treatments are available should you require them.
Because I’ve already had a very aggressive blood cancer (AML) and happy to say I’m now ‘fit as a fiddle’ and in a durable remission, I want to help you understand that even though your diagnosis can be scary, this doesn’t have to take over your life or define you going forward! @rrivory summed it up nicely, we can’t dwell on the “what ifs”…that just gives us too many opportunities for negative self talk.

So, the best attitude is to pick up where you are and face this head on. Knowledge is power so here are the articles I feel are good sources for your information.
https://www.healthline.com/health/cancer/mds-hematology#symptoms
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https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548#:~:text=Myelodysplastic%20syndromes%20%28MDS%29%20are%20a%20group%20of%20bone,how%20the%20bone%20marrow%20creates%20healthy%20blood%20cells.
I really do appreciate how frighting it is to read through these articles and worry that your diseases may progress. @rrivory, is already having discussions of having a bone marrow transplant which will give her a completely new immune system…for a second chance at life. It works! I had one 4 years ago and now feel amazing, like nothing every happened. I was 65 at the time…now 69 and feeling incredibly healthy and fit. A friend I met at the same time I had my transplant at Mayo-Rochester had MDS! She is also doing fabulous…no more blood cancer!

@rrivory, there are quite a few of us in the forum who had a SCT using donor cells (allogenic transplant) and we’ll help you along your journey so keep me posted with updates, ok?

Hi Lori,
Thank You for sharing it is very helpful to hear your journey. If you don’t mind me asking? What were your symptoms and diagnosis in the beginning? Did you get the diagnosis of MDS first?

Hi @momz I wasn’t diagnosed with MDS prior having AML. I’d had a complete physical including CBC, 7 months earlier and there was no indication of anything amiss.
In fact I really had no symptoms of my acute myeloid leukemia until about three weeks before I was gravely ill.

The day after my 65th birthday I developed a ‘tickle’ in my chest that caused a cough. For 3 weeks in a row I saw my doctor who insisted it was bronchitis though I’d not been ill previously. The cough, fatigue and sustained fever of 102 went on for those 3 weeks. No blood work was done…just dismissed to go home, telling me I’ll get better despite telling her how awful I felt…that this didn’t feel like bronchitis.

The last week I could barely function, the fatigue was debilitating. My skin looked lifeless, no color. Never in my life have I felt so horribly ill. My husband called my friend’s husband who is a doctor. He rushed over and took one look at me…could see I was seriously anemic and heard pneumonia in my chest. He told my husband what tests needed to be run. So the next morning my husband carried me into my doctor’s office. She still insisted I would be fine…my husband insisted on blood work…there was actually an argument. Finally my doctor relented and sent me to the lab…in a wheel chair because I could no longer walk.
Later that afternoon my doctor called me at home saying that I needed to pack an overnight bag and report to the hospital for a blood transfusion. I was so out of it but had the presence of mind to ask why someone with pneumonia needed a transfusion…to which she replied “Well, apparently you have leukemia.”
I was admitted that night and was in the hospital for 5 weeks the first time. Had my doctor bothered with blood work initially, it wouldn’t have changed the diagnosis but I would have gotten treatment much sooner. My chemo nurse said without the transfusion I wouldn’t have made it to the next morning.

My blood work, DNA test and bone marrow biopsy showed I had AML with 3 acquired mutations which put me in a high risk category for relapse without a bone marrow transplant. So I went through months of chemo first, then had the transplant. It’s been very successful and I am now back to being in the peak of health, walking 5-7 miles daily and 98% back to normal activities. If it wasn’t for the threat of Covid I’d be at 100%.

In retrospect I may have had some symptoms that I missed. I dropped 10 pounds in less than a month but I attributed that to eating less and getting a lot of exercise while we were in Florida. So I didn’t think anything of it except pleased to lose weight! 😅 And I had a small sore on my leg that didn’t heal very well.

Not every case of MDS will develop into AML. Some types of MDS have a higher risk levels than others. Are you working with a hematologist oncologist?

Wow how brave of your husband and such incredible strength you have to be where you are today!! Thank You so kindly for sharing. Yes I see a hemo/ono every 6 months. I had a routine physical and blood work done in 2017 that showed low wbc and it continued.
My MD sent me to hemo/ono I had ovarian cancer at 29 so just to be proactive. Ended up having a BMP in 2/2021 that showed rearranged Clonal T cells and I have been asking my hemo/ ono what it is and finally last month he said MDS but don’t worry and if it progresses I will need treatment. Now my head is spinning. I need some time to process and try to not dwell! I am hopeful and will get there.
Thank You again for sharing and being so caring.

Thanks Lori, I will! I am 64 now, so knowing that your SCT went well at 65 is encouraging! Thank you for taking time to help and encourage others!!

My symptoms are about the same as everyone else. Was sent to oncologist found out my mean blood cell are to large,was diagnosis with mds.gave vitamin b12 shots.now wait and watch