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.

Yes, I have MDS5q- and I did not want to have a bone marrow transplant, etc. I was diagnosed in December of 2023 and it didn’t become aggressive until early summer of 2024. I’m now dependent on blood transfusions every two weeks or so when hemo is in lower 7s. Finally, I’ll get to my question! I am a 77 yr old woman.and in Pallative care. I have had 7 blood transfusions which make me feel great. My oncologist tells me that the transfusions will stop working at
15 to 20 times as my body will recognize its foreign, etc. I cannot find any info stating that. Is anyone heard this? Thank you so very much for your time and care. Linda

My husband was diagnosed with MDS 5q deletion in 2018. He is age 83 now and also under Pallitave care with Hospice Transitions. We have been told the common reason transfusions become problematic is because of iron overload, requiring intervention to reduce iron. And we’re told this is a different timeline for each individual - it could be only a few transfusions over several month’s time; some people gan get transfusions for a greater period of time before overload.

If you have learned of other reasons for transfusion failure, can you share what you’ve learned?

Everybody’s system is different, but here’s our experience:
My husband was treated with weekly Procrit injections which failed after about 2 years. Then Vidaza infusions that failed after about 2 years. Then Revlimid which was was stopped after about 2 years because it contributed to kidney failure. He now has Retacrit (Procrit) injections once a week, along with Nivestym (Filgrastim) for helping to increase white blood cell counts.

After each failure he had transfusions of packed red blood cells to keep Hgb at a level allowing him to have enough energy to get out of bed.

He now sleeps at least 8-10 hours each night, and sleeps 3-5 hours during the day. He is always tired, always fatigued, slow thinking, gets no exercise, has little enthusiasm for anything; but is able to get up and dressed most days. I do almost everything for him other than showering and dressing. We are both exhausted.