Anyone have or heard of MDS with 5q-syndrome?

Hi too am in Australia. Do you live in Sydney? My haemoglobin was 90 last blood test a week ago although has gone lower at other times. Blood transfusions every 4 weeks. Would love to speak to you.

@lindamarf, I hope you saw the helpful reply from @marco88 (Lee) about transfusion and risk of iron overload, sometimes referred to as secondary hemochromatosis. Here's some information that helps to explain:

- What to Know About Iron Overload If You Have Myelodysplastic Syndromes https://www.healthline.com/health/mds-and-iron-overload

Is this what your doctor was talking about?

Yes and reply has been very helpful. Thank you.

Hi I have MDS with 5Q and started taking Lenalidomide about 2 1/2 weeks ago. I was just tested and the results were unchanged. How long does it take before I mights see some positive results?

Hi Jeff, Welcome to Connect. I know from experience that we’d like our meds to work immediately! It’s not always the case with blood cancers. Unless it’s a strong chemotherapy, some of the treatments can take more time to slowly change blood chemistry.

There’s a current discussion where I think you might find more members sharing their experience with taking Revlimid (Lenalidomide) for their MDS as well as MM.
Here’s the link to:

What are your experiences with lenalidomide (Revlimid) for MDS?
https://connect.mayoclinic.org/discussion/what-are-your-experiences-with-lenalidomide-for-mds/
Please feel free to jump right into the discussion where you’ll meet @gingerw @darlaburley @janetlen @5qdeletion and others.

How long ago were you diagnosed with MDS? Where you having symptoms that led to the discovery?

@jeffreykassover1
Jeffrey: We are all a little different, but about a month into treatment my RBC and Hemoglobin rose to near normal. That was great news for me because it was low before treatment and I was not looking forward to transfusions. Plus,I felt terrible. Now levels are normal for RBC and HG. The Revlimid does affect my platelets and neutrophils which were very low on the initial 10mg dose. I had to wait about 6 weeks for the values to come back up. Then I started round 2 at 5mg. The 5mg dose is starting to impact platelets and neutrophils again. Now we are trying a two week break versus a 1 week break. I have been on the med about a year. I feel fortunate that there is a drug that works so well for del 5Q.
Janet

Hi Lori and thank you for your response. I was diagnosed with MDS about 3 months ago, and initially I was given injections of something, that had no effect. Now I've started with Remlivid and am hopeful that I will see better results.

I really had no obvious symptoms other that Anemia, which was low for quite a few months. I had colon surgery this past summer, and needed a transfusion before surgery (which went well)
Then my Internist suggested I see a Hematologist who told me I had MDS.

I have tolerated all my medications well, and have other serious issues. Of course I was disappointed and depressed when I heard the initial results, however now, with some of the comments, I feel much more comfortable about waiting for the medication to work.
Thank you so very much for your support, and I look forward to having further discussions with this group. Jeff

I started taking Lenalidomide almost 2 weeks ago. I will see the doctor when 4 weeks are up. Hoping for good results. Thank you for sharing.

I know how you feel - I was diagnosed with this on 4/05.2024 - I already had a stroke at the end of September 2024, due to too many injections and Revlimed. I have had four (4) blood transfusions since June 7, 2024.
I do not have any heart issues, as my PCP had me on a heart monitor for 28 days in October to November 16, 2024. Heart issues all in the normal range.
Now, because I was going every other week, it was not enough for me! I am going back every week for labs and only twice for injections. I told my oncologist if I end up in the hospital again, I won’t make it out!
I am seriously thinking about getting the bone marrow transplant if I can go to Mayo Clinic in Jacksonville Florida, as my only son lives about 20 minutes away. I still work a full time job and they are not messing with me because I am doing my job to the best of my abilities.

Good morning, @usmcmom. I’ve been reading through several of your posts about your diagnosis with MDS almost a year ago. What’s troubling me is that you’ve mentioned a couple of times that you’re asymptomatic…that means without symptoms. Which surprises me because with requiring weekly blood labs, frequent transfusions, taking meds to increase your red blood cells and your white blood cells, from personal experience with AML, those are definitely symptoms of your diagnosis.

If you’re thinking about having a BMT at Mayo-Jacksonville, here’s a link to get you started with initiating a request for an appointment. You don’t need a referral but it can help to have one from your oncologist. http://mayocl.in/1mtmR63

Do any of your blood tests show the presence of blast cells?