Low WBC, Low Platelets, Low RBC, Large cells - is it always Leukemia?

I also have 5q and I am on 5mg Revlimid for the last month.

I have felt zero improvement

My hemoglobin goes to mid 6.0 between monthly 2 unit blood transfusions.

The highest my hemoglobin has been is 9.0 a day after a 2 unit blood transfusion.

Have you with 5q seen any improvements in hemoglobin levels, what is your treatment and what is your hemoglobin number ?

I started out on 10mg Revlimid, but I had to go to the lesser dose (5mg) because the higher dose was too hard on my platelets and WBC. The Revlimid brought my RBC and HGB up from 8.7/9.0 to 10 and kept rising until 14-15 range. The Revlimid lasted roughly 15 months. My HGB and RBC are just below normal now which is similar to when I was first diagnosed. I took my first round of Inqouvi 2 weeks ago. My platelets(39) and neutrophils(.5) last week. The oncologist told me it can take a few months to see improvement. To date, I have not had transfusions, but I think those days are coming to an end. The treatments average about 2 yrs of success before we have to try something else. Have you tried anything else? Are you a candidate for a stem cell transplant?

Thank you so much for responding.

How long did it take in weeks or months at 10 mg to see a positive hemoglobin response ?

Jan 24 HGB suddenly dropped to 9.6.
Feb 29 9.1
Mar 5, 24 started 10 mg dose
Mar 7 HGB 9.7
Apr 4 11.3

I was diagnosed July/Aug 2023. I had about 6 mo of "wait and watch"

Wow.

You had a fantastic rapid response.

I am awaiting after 40 days at 5 mg “ any” positive response.

I am at about 7.0 on hemoglobin now after a 2 unit blood transfusion 35 days ago.

The highest I ever got immediately after a 2 unit blood test was 9.0

You are doing great !

I am sorry to hear you are not getting a great response. I know transfusions are not fun and I am not looking forward to them. I was doing great, but a few months ago things changed. Platelets and neutrophils kept getting lower. We tried one week on and a month off of Revlimid. Same results. A 5th BMB in July showed an additional 5 molecular changes now totaling 6 along with the genetic Del 5q and del12. By themselves the molecular changes are low risk. Combined, they are a problem. I am now Intermediate risk and pursuing Stem Cell Transplant. Have you discussed other options with your Hem/Onc?

What dose of Revlimid are you on ?

How long have you been on it ?

Revlimid is no longer affective. I was on it 15 months. Stated Inqouvi (decitabine) a few weeks ago.

You are blessed.

11.3 while low is a lot closer to normal than the majority of people on this web site.

When I was at 11 a few years ago I felt great and lifted heavy weights 6 days a week.

Now when I am between 6-9 on hemoglobin, and getting monthly blood transfusion I am constantly tired.

I hope just starting on daily 5 mg Revlimid I see some improvement.

Thanks for responding;

Thanks! The 11.3 after starting Revlimid was a blessing since I was at 8.7 two days after starting the medication. Like you, I started a quick downward spiral six months into the disease. Like you my HGB was near normal two years ago when I was first diagnosed. I have been at the low and I have been blessed to have a medication make my HGB normal. I believe all MDS patients experience the highs and lows. I wanted to avoid transfusions and still do, but I also know at some point I will not be able to avoid them. Nothing is worse to me than being dependent on another human being for my life! I can't live like that for very long.

I pray that you will have a positive response to Revlimid or some other medication and your HGB will return to normal.