Living with MDS (Myelodyplastic Syndromes)

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?

Thank you Lori. I will do my blood work next week to see if the white cells have come down. I will talk to my oncologist about my itching. I did a bone marrow biopsy so will get the results. I hope the CMML isn’t progressing. I also
Started a new medication my oncologist put me on for my kidneys. It’s called allopurinol. It could be that too that is giving me the hives.

Oh gosh, Jacklyn. I hope the itching will get better for you. I ran your meds through an online med checker for interactions and didn’t see indications that the loratadine would interfere with your other two meds. But you should call your pharmacy to make sure.
Loratadine is an antihistamine and that may really work well for the itching! It would be worth taking to see if it brings you relief.
I know this all feels insurmountable right now with the back pain and depression. The itching alone can be incredibly intrusive on the quality of life! So I truly hope the antihistamine does the trick! Of course I’ll pray for you and will also add a huge, but gentle hug. Please let me know if the Loratadine helps you, ok?

It started before I started the hydroxy. They say it’s exama. I do have some pimples here and there but it’s at night that I feel
It worse. My pharmacist gave me loratadine but I am
Afraid it will
Interact with my venlaflacine and clonaplazine. I fell
Last November and fractured my L1and L5 vertebrae. The worst pain imdbervwdnt through. Ended up on morphine and went to thevER three times in pain. Went through a break through depression which was the worst. Then they found water around my heart so that had to be drained. I am
Hoping the hydroxy will shrink my spleen and lower my white cells snd the itching will
Go away. Pray for me. Please. .

Good morning, @jacklyn. Itching…I swear that can be worse than pain. Unfortunately it’s a lovely side benefit of some blood diseases…sarcasm duly noted. I had AML and got to the point where I could barely tolerate showers…before and during treatment. So you have my deepest empathy.

You’re not alone in this…though I know ‘misery loves company’ it doesn’t cure the itch! I found this discussion for you posted by @madhornet, who also has CMML and dealing with itching!
MDS-CMML-1: Anyone dealing with pruritus (itching)? https://connect.mayoclinic.org/discussion/mds-cmml-1-information/

Hopefully you’ll find some helpful information in the conversation. Did your itching become worse when your HU dosage was increased?

@jeffreykassover1 Jeff good to hear that you are having better results with the Vidaza. I hope you have a 3 yr success like @miketllc3. My 16mo success with Revlimid may be changing to pill form of a hypomethylating agent, decitabine. I am having a 5th BMB on July 5. I am hopeful the blasts have not increased.

I have been diagnosed with MDS 2016. Now I have been diagnosed with CMML. 3 yrs ago. I have taken hydroxyurea for an increase in my white cell count. They were up to 70. And the hydyoxyurea brought them
Down to normal. Last week I had another bone marrow byopsy last week because my white cell count went up
Again to 75. Also my spleen is very enlarged so
I have had nausea. I am 77 and have problems with digesting. My worry is recently l have had itching. It started with a few hives but now it’s like I itch all over especially at night. I read it could be Puritis and there is no cure for that. I am hoping the hydroxurea will shrink my spleen and lower my white cell count and take away the itching. I take 1000mg if hydroxy a day Monday to Friday and 500mg on the weekend. On my second week where she upted the dosage. Is there anyone else who
Has suffered with this itching.

Thank you! I'm on my 5th round of Vidaza, with some positive results and some mixed results, which the doctor attributes to normal fluctuations. I hope so. Your three years on Vidaza help my thinking and made me hopeful. Thank you. Maybe the Vidaza finally kicked in.

Thank you! I'm on my 5th round of Vidaza, with some positive results and some mixed results, which the doctor attributes to normal fluctuations. I hope so. Your three years on Vidaza help my thinking and made me hopeful. Thank you. Maybe the Vidaza finally kicked in.