Living with MDS (Myelodyplastic Syndromes)

Posted by momz @momz, Sep 4, 2023

I finally got my answer to what I have and trying to wrap my mind around it.
I am an ovarian cancer survivor of 20 years and have MDS for the last 7
Currently on watch and hate to even say wait!! What is the longest someone has had with no treatments? And what was the reason for treatment when it was needed?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Sep 11, 2023

In reply to @tjakusz "I was very fortunate. I was diagnosed with MDS in 2019 and only needed one transfusion..." + (show)

Welcome to Connect, @tjakusz I’m sorry to hear you developed AML. There are several of us in the blood cancer support group who have had AML, received bone marrow transplants and we’re doing great.
I just celebrated my 4th rebirth day the end of June, @alive is in her 7th year post transplant, @edg1123 at 3 years and @kt2013 with a milestone of 10 years! So there is hope beyond all the hoopla your going through with the AML treatments, reaching and keeping a level of remission until Transplant.

So if you have any questions at all don’t hesitate to pop into our discussions or ask us anything! We’re here to offer support! ☺️

~Acute myeloid leukemia (AML): What can I expect?
https://connect.mayoclinic.org/discussion/can-someone-address-acute-myeloidal-leukemia/
~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
What treatments are you going through for the AML? Do you have any pesky mutations?

tjakusz | @tjakusz | Sep 11, 2023

I was very fortunate. I was diagnosed with MDS in 2019 and only needed one transfusion up diagnosis. For the next 3 1/2 years, I needed occasional arensp injections to raise HGB which worked great. All my other counts were normal Then last June, I got covid and it all changed. My WBC count skyrocketed and never returned to normal. A bone marrow biopsy showed I had flipped to AML and have been in treatment since. Hoping for bone marrow transplant soon. I wish you well!!!!

snakebite | @snakebite | Sep 10, 2023

I am a 76 yr old Man with both MDS and MF. It started out as ET 16 yrs ago and progressed it's downhill run over the years. I am Anemic and for the past 5 yrs have had a very low energy level, and naps became a normal part of my day. I struggled to keep my Hgb above 8. I received Aranesp injections every two weeks to help with the Hgb, later Reblozal injections were added every three weeks. These both helped to keep things above 8, but eventually I had to add Transfusions to keep things above 8. At first about once a month, finally every two weeks to keep it between 8-9. WBC was low most of the time and my Immune system was very low so I was extra careful about who I was in contact with. As time went by my spleen became huge. As a last minute effort before Radiation to decrease it's size, my Hematologist/Oncologist put me on VONJO. Four 100 mg pills a day. My spleen started shrinking right away and for the past several months has no longer been an issue. The need for Transfusions however continued. A year ago he added Dacogen infusions for five days every 4 weeks. They told me that the Dacogen would make me loose ground, but the hope was that it would attack the Cancer cells more than the Good cells. My Hgb and WBC always dropped after the Dacogen treatments and I always needed a Blood transfusion at the end. It finally reached the point that the WBC count was just about to nothing, and they stopped the Dacogen. That was about 3 months ago. It looks like the treatments did their job because my WBC started going up, by Hgb started going up, good RBC increased and I feel better than I have in years. I can do a swift walk of a couple miles every morning with no out of breath problems. I haven't needed a transfusion since they stopped the Dacogen treatments and my Hgb has been holding between 11-12. At this point I am still taking the Aranesp, Reblozyl and VONJO. I have a blood count every week to monitor the situation, however if things continue I expect that will move to every other week or maybe even once a month. If things start falling, I'm sure that I would be able to tell and would go in for a test. I don't know how long this good situation will last but for now I am enjoying it. For the first time in years we have scheduled some travel time. There is no doubt in my mind that God has played a part of this good news. Bottom line.... stay as upbeat as you can and never give up because you never know what is coming around the next corner. Advancements in this area are coming very quickly now days. I have been waiting for the release of a new drug that is suppose to do everything that the Dacogen did without the negative side effects.

momz | @momz | Sep 9, 2023

In reply to @jps01 "I am a 76 year old male who is now living with Myelodysplastic syndrome, ringed sidero..." + (show)

Thank You for saying it’s embarrassing to need to take naps. I can relate, I need them also but have been ignoring my body. I feel lazy and bad because my husband is at work doing roofing and I work from home and I am 49.
I know it will be good to do so and probably help me from being grumpy.
I have found myself with many emotions since finding out and am experiencing more hard days than easy. I want to not only be grateful and kind but really feel JOYFUL 🙏🏻

julie212 | @julie212 | Sep 9, 2023

In reply to @lorieafoote "My symptoms are about the same as everyone else. Was sent to oncologist found out my..." + (show)

Hi. My husband was just diagnosed with MDS (and POEMS syndrome simultaneously - which is very rare) just 6 weeks ago. Luckily it was diagnosed early. He is on weekly Darzalex infusions (Monoclonal antibodies) and starting lenalidomide this week. I'm trying to learn everything about managing, coping and daily living with these conditions....... did the B12 shots help?

jps01 | @jps01 | Sep 9, 2023

I am a 76 year old male who is now living with Myelodysplastic syndrome, ringed sidero blasts, multilineage dysplasia (MDS-RS-MLD). Lot's of words...
Although at this point, I am classified as “low risk, but the consequences are that I am anemic as well as immunocompromised.
Currently, I am monitored through monthly blood tests by an excellent hands-on hematologist.
Yet, having been very healthy and quite active all of my life, I am finding this to be quite difficult to live with , and to “wait”. Am told that best treatment is stem cell transplant, but due to my age and beeing immunocompromised, risk of infection makes transpant unfeasable.
Same with blood transfusion, i.e. too risky.
If no infection, I can last for a number of years. But over the last year, I have had three events where infections occured, and required antibiotics.
Thus all is well for me, if I can escape serious infections.
Need to take naps, which I find embarassing. 🙂
I realize that all of us seem to be living with subtle differences within the MDS family, but would there be any suggestions as to what I might be able to do to possibly modify the current situation?
I am ready to go on living with how I stand, but am getting preassure from family to get a second opinion.

bonnieshaffer | @bonnieshaffer | Sep 9, 2023

@momz

I was diagnosed with MDS with Refractory Anemia and multi lineage dysplasia in February 2021. I did not require treatment until March of 2023. Although my MDS was still fine, I had developed a JAK2 mutation which sent my platelets over 1.2 million. My doctors were pretty shocked. I am taking 500 mg Hydroxyurea daily to bring down my platelets. The drug is working very well. It has brought my platelets way down and has not dragged my red or white blood cells down.

I am eventually headed to a Bone Marrow Transplant, probably within the next 5 years according to my Dr. But for now, I'm good.

lorieafoote | @lorieafoote | Sep 8, 2023

In reply to @momz "Hi Lori, Thank You for sharing it is very helpful to hear your journey. If you..." + (show)

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

rrivory | @rrivory | Sep 8, 2023

In reply to @loribmt "Hello @momz @nbadry @rrivory @honeymae. I know that you’ve all been diagnosed with a blood condition..." + (show)

@loribmt

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
~~~~~
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?

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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!!

momz | @momz | Sep 7, 2023

In reply to @loribmt "Hi @momz I wasn’t diagnosed with MDS prior having AML. I’d had a complete physical including..." + (show)

@loribmt

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?

Jump to this post

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.

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