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

As a MDS person I feel compeled to mention what my Dr. (Oncologist) has tried for me- and it has worked great! Reblosal (sp?) My H&H have never been higher, even when I was young. I am also undergoing IvIg infusions for Sjogren's Nueropathy and it is a subcutenaneous shot given in my abdominal fat. I also have low platelets (not too bad at the moment) and high monocytes. White count is down somewhat but not bad enough to treat. Monocytes are doing extra work there it seems.

Thanks, suetex!

I looked up Reblozyl. It's Luspatercept, the drug Moffit Cancer Tampa, Dr. Rami Komrokji was involved in FDA approval. Apparently it's only for people without previous erythropoiesis treatment, and it may only be for Thalassemia type of MDS. I think it is also for conditions other than MDS. Can anyone corroborate this based upon experience or a doctor's advice?

From internet search:
"Anemia in MDS & Beta Thalassemia (BT) Treatment ...
REBLOZYL https://www.reblozyl.com
REBLOZYL® (luspatercept-aamt) is a prescription medicine used to treat anemia (low red blood cells) without previous erythropoiesis stimulating agent use (ESA- ...
‎Financial assistance · ‎About REBLOZYL for MDS... · ‎Staying with REBLOZYL"

Thanks!

Im new at this. Getting my 2nd Procrit shot tomorrow. I dont know whats next! Im at 8.2 in red blood cells!
BJW
Montana

Oh my goodness, Kathy. I’m so profoundly sorry for your loss and I’m struggling with what to say! What a devastating loss and I’m as dumbfounded as you are that your husband wasn’t given blood the same day his doctor found out his hemoglobin reading was down to 7. Anything below 8 is considered dangerously low and 7 and anything < 7 is critically low, which can lead to heart failure.

I want to thank you for sharing your husband’s story, Kathy. It’s a tragic loss for you, your family and friends. My heart goes out to you because it feels as though there is unfinished business. Sometimes it can be helpful to write what you’d want to say to your husband’s doctor, to get it out of your head. You can decide if you send the letter or not but moving those thoughts out onto paper instead of ruminating in your head will help relieve some of the underlying emotions that need to be released.

It may be too soon for you, but we do have a Loss & Grief support group in Connect with other members who have lost their loved ones. It can help to not feel so alone. https://connect.mayoclinic.org/group/loss-grief/

Kathy, do you have family members nearby to whom you can turn to for support?

Kathy, I am so sorry. Yes knowing he was 7 on Tues and not receiving blood til
Friday his poor body couldn’t handle it all. Not acceptable but that doesn’t help you now. Yes we all need to be better advocates. Please take care of yourself.

As a person who has MDS (and many other things) I want to thank you for being a caring supporter of your husband through his condition. I know you were very important to him. We do need the people around us and my heart goes out to anyone who finds themselves alone with one of these conditions. Thank you.

Thank you for your note. This wasn’t the first time he was made to wait for a transfusion but knowing what I know now, we definitely should have gone to the emergency room. He was robbed of his life too soon. But he was in pain his entire life and I believe he is in a better place now.

My husband was diagnosed with MDS not even 2 years ago and he passed away June 27. He had other issues than the MDS but he also had an extremely low level of red blood cells. He went in to get tested on that Tuesday and his level was 7. They couldn’t give him an appointment until Friday. He went into cardiac arrest during the transfusion and although he was revived 3 times, never woke up.

I’m pleading with anyone who has MDS to stay on top of your blood levels. Personally I partly blame his doctor for not following up on his condition. He went over 3 weeks without a transfusion and it was far too long.

God bless you all and best of luck

Kathy Thomas

Kathy I am so very sorry for your terrible loss. My husband was diagnosed with MDS in late November 2023. He was referred for a stem cell transplant at Mayo and began chemotherapy and transfusions with our local cancer center. We have had a wild ride with several hospitalizations, blood counts three times a week and many transfusions. At last a donor has been found and pretransplant testing scheduled. My heart goes out to you. This could easily happen to us. Be gentle with yourself in your grief.

I really appreciate your note. I've been having a terrible day. My prayers are with you and your husband with the stem cell transplant and treatments. It is a very hard disease to deal with. I'm aware the transplant process can be very difficult, but just think, he will be cured! Best of luck on your journey and I would love it if you could keep me posted on his progress.