Living with MDS

@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.

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.

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?

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 🙏🏻

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.

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!!!!

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?

Thank you to all of you for your comments, suggestions (especially regarding attitude), and explanations. Although I am, along with Snakebite one of the oldest people on this thread, I feel that I am the most fortunate in light of the fact that I am just relatively recently anointed with MDs.
I live in Canada, and cannot compare my blood measurements to the US, sincewe are in Celsius (and I can’t figure it out). But my white and red cells are off. And because of my age, the hematologist has informed me that I should be able to live on for a quite a while, as long as I stay away from a major infection. If not, all bets are off.
Being anemic and neutropenic is an issue, but there is no pain. And I can take a nap, be careful, wear masks in indoor public spaces (Covid is still with us), and enjoy life.
As I had mentioned earlier, I am ready to go on living with how I stand, but am getting pressure from family to get a second opinion.
But the literature on MDS, in some respect, does not give many alternatives for treatment…
Yet who knows, maybe I will also be able to walk two swift “kilometres” soon. 😊

Hi @jps01, from my experience with leukemia and hundreds of blood tests over the past 4 years, all of my tests results are presented in the metric system. It’s a universally accepted standard for healthcare world wide. So your numbers from Canada should parallel those in the US, if that helps you out.

I’m happy to hear you’re in the low risk MDS group for progression. Deciding to take a treatment at this point is a personal decision. The watch-and-wait (or active surveillance) approach lets you avoid therapy's side effects until you need treatment. Treating MDS during this early stage hasn’t proved helpful according the the Leukemia & lymphoma society;
https://www.lls.org/myelodysplastic-syndromes/treatment/watch-and-wait

I did find a list of potential treatments for MDS should you be interested in the future:
Less aggressive treatments are:
Azacitidine (Vidaza)
Decitabine (Dacogen)
Decitabine and cedazuridine (Inqovi)
~~~
Vidaza
https://news.cancerconnect.com/myelodysplastic-syndrome/vidaza-improves-survival-in-myelodysplastic-syndromes#:~:text=Vidaza%20was%20the%20first%20agent%20approved%20for%20the,effects%20on%20survival%20have%20not%20been%20clearly%20established.
~~~~~
INQOVI https://www.inqovi.com/?msclkid=782b208c32841e96dd324473bf27d947&utm_source=bing&utm_medium=cpc&utm_campaign=Patient%20-%20Unbranded%20-%20Treatment&utm_term=how%20to%20treat%20myelodysplastic%20syndrome&utm_content=Treatment%20-%20Myelo

~~~~~
This article explains MDS and lists a number of potential treatments
https://www.cancer.net/cancer-types/myelodysplastic-syndromes-mds/types-treatment
~~~~
Reblozyl to treat anemia in MDS https://www.curetoday.com/view/fda-approves-reblozyl-to-treat-anemia-in-mds-subset

I love your attitude and honestly that’s the best way to live life! Enjoy every day while still taking those much needed precautions to avoid illness. I’m right there with you but I don’t let a compromised immune system stop me from enjoying my second chance with life. ☺️

Lori, your response is wonderful! I think it will take me weeks to read and research these additional articles you suggested. 😊 I am grateful, and I will.
Re the blood measurements: My WBCs are 1.7L, and the RBCs are 2.52L. I would lie to be able to better relate to such comments as “Hgb above 8”, compared to my HGB being 97L.
I am under the impression that treatments for my condition are limited due to being informed that HEPO, for instance, with high HGB could lead to a stroke, or that blood transfusions could accelerate the leukemia cells, whereas a stem cell transplant is too risky due to the risk of infection and my age.
In any event, you have already provided with lots of information, and I am grateful. BTW, I just got up from a nap. Your turn. 😊 Merci.