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

I have mixed feelings as well. When my hemoglobin dropped to 8.7, I felt awful. My oncologist set my transfusion point at 8 since I was symptomatic. I started Revlamid at the same time and it's working. The goal is to avoid transfusion dependence but I know at some point I will be there. I would have welcomed a transfusion at 8.7.

My husband has the same form of MDS. He has been on Lucpatercept injections for over 2 years. He started Revlimed/lenalidomide in February. He also has periodic blood transfusions. The chemo schedule for now is 2 weeks on/2 off. He started out daily, then white cell count tanked. Then it was every other day. Now it’s the 2 & 2. He feels awful when it’s 2 weeks on. So fatigued & short of breath. The docs keep trying different dosing, but it hasn’t been easy. The upside is that his hemoglobin has remained fairly steady, 8.7-9.5. Do your research on all of the side effects & try to be very proactive in your care!! Best to you!

@abdweidner, such a journey of trial and figuring things out that work for your husband. That can't have been easy. Is the 2 weeks on followed by 2 weeks off of luspatercept working for your husband?

The luspatercept injections are every 3 weeks. Those do not work as well anymore, which we have been told is normal. So now he takes revlimed 2 weeks on/off to supplement the revlimed. Thanks for asking!

I also have MDS del 5q Currently my haemoglobin is sitting around 90. When I need transfusions I'm told I'll be started on Revlimid. Can I ask how you feel on this drug and what the side effects have been? I'm always fatigued, but still working. I wonder whether I'll be able to continue.

Sorry, just clarifying. I'm in Australia. Haemoglobin 90 here is same as 9 in US...

@nbadry - my side effects are relatively mild: occasional joint pain, initially some itching, and fatigue. Round 1 I was on 10mg and the fatigue was worse. The dose also had a negative affect on my platelets and WBC. I had to wait many weeks for platelets and WBC to come back up so I could start the 5mg dose, which I will be on for some undefined period of time. I am feeling great now. All my values are normal right now. The first few months can be a challenge. For me the side effects were not debilitating.

Thank you so much @janetlen. That's encouraging.