Myelodysplastic Syndrome (MDS): how to increase red blood cells?

I have been doing very well with Procrit shots every 4-5 months, in a series of 4 or 5 weekly injections. Then when my red count goes down I start the injections again. I was once told by a good dermatologist that my all-over itchy skin is part of my myelodysplastic syndrome. It's very disturbing trying to control the itching. Anyone out there have this condition?? @

Aw, Howard, you’ve been through the wringer with this! It’s a miserable feeling when you’re neutropenic and so weak. I’m happy to hear you’re back home but take it easy for a while. No basketball in the driveway. ☺️ Joking aside, it’s a relief to learn your numbers have stabilized for now. Hopefully you’ll see an increase soon. After 17 days in a hospital bed and their food, I’m sure if feels amazing to be back home again. I hope the sun is shining where you are today. Maybe a little fresh air outside for a while will help clear the cobwebs. You have a strong spirit of endurance, my friend. Sending you a hug.

Hello @jaylevel1, welcome to Connect. It is my understanding, and I am not a medical professional, that Vidaza is a medication that is supposed to help red blood cells mature. If you don't mind sharing, has your provider discussed taking any other medications that are prescribed for MDS that are meant to stimulate growth of red blood cells [epoetin alfa (Epogen, Procrit) or darbepoetin alfa (Aranesp)]? Here is a little more information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980. I'd like to invite @reibur1951 to this discussion as they have discussed MDS in-depth and may have some insight on the disease to share. You can also read some of rebur1951's posts here, https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/.

@jaylevel1, how are you feeling with this disease? Many people talk a bout experiencing fatigue, are you finding this to be true?

Like u I been on vidaza an 50 mgs of the other drug for 14 days to lower my blast cells an now off for 2 weeks waiting to see if my counts go up I suffer low rbc hgb platelets an wbc an get transfusions on almost weekly basis with hgb goin fr 6.6 to 8.4 wat else should I be doing my oncologist is saying if my blast cells go real down she wants me to have BMT wat to do is my question tuff decisions

Hi hope your doing better an yes I’m starting Inqovi soon an was wondering how yours an any other’s experience was with that drug

I have been doing very well with Procrit shots every 4-5 months, in a series of 4 or 5 weekly injections. Then when my red count goes down I start the injections again. I was once told by a good dermatologist that my all-over itchy skin is part of my myelodysplastic syndrome. It's very disturbing trying to control the itching. Anyone out there have this condition?? @

I was diagnosed with MDS in Feb, 2024 with an IPSS-R (International prognostic scoring system) risk category of intermediate, and overall score of equal to or less than 4.5. I started Vidaza infusion treatments on March 25 with alternate diarrhea and constipation following. Cycle #4 of estimated six will start June 17. My CBC numbers range from 1.9 to 4.9 (WBC), 2.34 to 3.80 (RBC), 7.9 to 12.9 (HGB) and 70 to 183 (PLT) over the past three months. I have also had three transfusions since Jan. 24. I feel weak and tired most days and appetite is poor, but am surviving with some depression. Estimated survival of 1 to 1.5 years with continued treatment. The aforementioned constipation arrives with rather uncomfortable stomach cramps and mucous like discharge; little to no stool. According to my Oncologist, I am not a candidate for BMT (age 85) and other health considerations so, I am quite curious about the usual physical effects toward End Stage.

I have developed a rash on one hand that dermatologist thinks is a fungus; not sure I agree, and it is not reacting to topical plus oral medication. It was very itchy initially, with blisters or bumps. Still working the solution.

Welcome to Connect @kmak1939stuart. I am sorry to hear about your diagnosis of MDS and the side effects you’re having with the treatments. There seems to be no dignity with some of these diseases and their remedies. I had MDS’s ugly step-sister, AML which can be very aggressive. Higher risk types of MDS can have it morphing into AML with the proliferation of the immature, ineffective white blood cells called blasts. At some point, if the blasts start outnumbering the red blood cells, ultimately it leads to the final curtain, so to speak.

Exhaustion and fatigue can be the nature of the beast and generally the worst of symptoms as it progresses. This happens as your blood numbers, especially your red blood counts dip to below normal. The lack of oxygen robs you of any strength. As long as you don’t get ill from any other causes the end can be quite calm. But having an immune system this compromised it can set the stage for rapid infections.

You’re wondering about the final stages of the disease. I came perilously close to my end (less than 24 hours) and I have to admit, if one has to get cancer this was the way to go. There was no pain, just a rapid daily decline over 3 weeks of no energy and dimming like my light was being snuffed out. I frankly could have just gone to sleep without waking. It was that easy.
My disease progressed that far because for 3 weeks in a row, my primary doctor would look at me, tell me I was fine and to go home and rest. In spite of me telling her, at 65, I’ve never felt this sick in my life. Finally the 3rd visit my husband carried me into her office because I physically couldn’t do it and demanded blood work. It came back hours later that I had leukemia and needed an immediate transfusion or I wouldn’t have made it til the next morning. That’s how important those transfusions are!

Last year about this time, there was another member who developed AML at the age of 92 @crhilston. He wasn’t able to have a transplant. For some reason his doctors didn’t feel he could have any treatments either, which was sad. He seemed in good health otherwise so I thought there might be some abrogating meds for him. Anyway, he ultimately went into hospice. He and I had some very deep but pragmatic end of life discussions. Maybe you’d be interested in reading them.
Here is the link where we picked up most of our chats…between @crhilston and @loribmt
https://connect.mayoclinic.org/comment/871617/

What helped me with some of my side effects from treatment is having a cup of Activia yogurt daily with a teaspoon of ground flax. Also it helps if you can get at least 64 ounces of water down daily. These chemo meds can really mess up our inner plumbing so trying to keep things calm can help.
I promise you’re not alone here so please, if I can help you out with anything just talk to me. Do you have friends and family around you for support?