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

I’m not really able to give you much guidance as to your type of MDS and statistics. I do know that MPN-UC isn’t common and it can make treating the disease more complicated. From what I’ve read though it can respond to the generally prescribed treatments for MDS and AML. But just as with some cases of AML (depending on the driving factors behind it) a bone marrow transplant remains the only potential cure at this time.

Since it’s been determined that a bmt isn’t a viable option for you, then this becomes a matter of personal choice as whether you continue with treatment or not. The goal of treatment for you is to keep the disease from progressing.

This may buy you precious time. If you do nothing then it’s basically throwing in the towel early. If you’re more miserable on the treatment than not, then you may wish to discontinue. And it will also depend on whether the Vidaza is having an impact on your disease or not. If it is, then you may want to stick with the treatments to see if it’s making a difference. You asked for my opinion and basically that’s what I would do. I’d want to do anything I could to hang in there a while longer. However, like you, if I started feeling the side effects weren’t worth it then I’d say enough is enough. There is definitely merit to having quality of life remaining.
I think you’ll know when it’s the right time to say ‘no more’ .

My other honest opinion for you would be to stop researching calculated endpoints or the prognosis for MDS or AML. No one can predict your personal endpoint and it won’t change the inevitable. But it is robbing you of the precious time remaining.
Think about what you’ve accomplished in the past 1.5 years or 1.7 years or 2 years!! There are many wonderful days ahead of you to not be worrying about that end date. Heck, any one of us could get hit by a bus tomorrow! So don’t waste a moment!
Enjoy your days with friends & family, do the things that bring you joy, have meaningful conversations with people who matter. Having been there myself, I found I didn’t fit into any of the statistical tables. I defied them all! 😅

I’m sure your doctor has you coming in for followup blood work. Is there any indication that the 3 months of treatments have had an impact on the disease? Have they mentioned seeing blasts in your peripheral blood? Did you have a bone marrow biopsy?

Hello @kmak1939stuart. I wanted to drop by to see how you’re doing. Last time we spoke you were about to start your 4th round of chemo for MDS but had reservations regarding continuing treatment. I know this is a personal decision and a difficult one to make, for sure. If you ever want to talk, I’m here for you. How are you feeling?

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

Hi @barbwsm We’re all new at this at some point. I see you’ve been a member for several years and it’s your first time writing in so I’d like to officially welcome you to Connect.
If I’m understanding correctly you’ve bene diagnosed with MDS. Myelodysplastic syndromes (MDS) are conditions that can occur when the blood-forming cells in the bone marrow become abnormal. This leads to low numbers of one or more types of blood cells. In your case it appears the production of red blood cells are affected.

Procrit is a medication that can help increase the production of red blood cells which should help get your level back a little higher. At 8.2 I’m guess you’re feeling pretty exhausted and maybe get winded fairly easily. Having more red blood cells will help with those symptoms.

There are several different types of MDS, based on which or how many types of blood cells are affected and other factors. Has your doctor told you anything about the specifics of you diagnosis or offered treatment options?

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

Hello @barbwsm! I imagine you are not feeling great. You do not mention whether your physician is a oncologist/Hematologist? I have MDS too. My Dr's prescribed the current treatment I am on based upon the type of MDS I have. I am responding well to treatment. Since I was symptomatic when I was at 8.7 Hemoglobin, I would have had a transfusion when the value dropped to an 8. What point do they plan to give you transfusions?

Fellow Westerner Janet in Colorado.

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.

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.