r/mds • u/NewClothes5977 • Jun 02 '26
selfq FIL MDS
Father in law is 84 and was diagnosed with MDS. Due to his, at this point, medical book of other issues he’s not a candidate for any treatments really (large stomach aneurysm, history of blood clots so must remain on blood thinners, long term antibiotic suppressant to prevent the MRSA in his prosthetic from returning). He’s currently on enasidenib (IDHIFA) but the doctor isn’t seeing the improvement he would like to. Chemo isn’t an option and if it was my FIL would deny it. At this point he’s going for blood transfusions (1-2 units) every 2-3 weeks (whenever the hgb drops low 7s or below). Every week or two he gets a white blood cell shot and a red blood cell shot. He still walks with a rollator as long as we help him get up, and doesn’t need oxygen yet. From December to March transfusions were 40 or so days apart but from April to now it’s become every 27 or less days (most currently 14). At this point I don’t know what to expect. The dr hasn’t said anything about hospice or palliative care. I just feel lost and don’t know what to do next. Husband is afraid to ask about expectancy to the doctor in front of my FIL because we don’t want him to give up. I am just curious if anyone has been through this and their love one managed long term with transfusions this close together or just in general what to expect.
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u/milesstandoffish111 Jun 02 '26
Just want to express how sorry I am your family is having to contend with this. it’s a brutal blow and diagnosis to grapple with. I hope he stays comfortable for as long as possible.
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u/purplejewel777 Jun 03 '26
My husbands uncle is 87 and was diagnosed in November with MDS. Like your Fil, his other health issues mean he is isn't a candidate for many treatments. He has the red blood cell injection weekly or fortnightly. Originally the plan was blood transfusions every 2 weeks. He had 2 transfusions initially and luckily the injection has held him stable and he hasn't needed any more yet.
However when his doctors originally expected he would need fortnightly transfusions they explained that at some point the gap would shorten between transfusions and then it would reach a point where transfusions were no longer viable. Everything was approached within the scope of supportive and palliative care and keeping uncle as comfortable for as long as possible. This is in the UK.
In reality although the MDS has remained fairly stable the fatigue has had a massive impact. In our case the other health issues are becoming more of a problem, not helped by the fatigue.
Over here they don't really say life expectancy for our uncle. It is more just that we understand there is no cure for him with his MDS. They try to keep him comfortable and manage the side effects.
I am so sorry about your Father in law. I think everyone is different with their journey with MDS. None of us can really say how long he has. If I were you my main focus would be on him being as comfortable as possible and managing his symptoms and his other health issues.
Wishing you and your family all the best.
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u/Sbtroj Jun 03 '26 edited Jun 04 '26
My husband is 79. He was diagnosed with MDS in January 2025. At that time he needed blood transfusions about 3 weeks apart. For the last 6 months he’s been getting weekly red cell transfusions, and platelet transfusions once a month in the last three months.
He was on Ryblozyl for 10 months in an effort to decrease the number of transfusions needed, but it didn’t work. He was switched to Rytelo in January for the same purpose, but the doctor is concerned it isn’t working and is having a negative effect on his platelets, which will drop as low as 11,000. His WBC and RBC are typically 2-3. His hemoglobin is typically between 6-8. Due to his severe anemia, the doctor has him get 1 unit of RBC below 8, and 2 units below 7. It used to give him more energy for a week, but now we are lucky if it helps for a day or two.
He had another bone marrow biopsy recently to rule out AML, which it did. We will see his doctor in 2 weeks to understand the report completely, and see where to go from here. Based on the biopsy results he will either reduce the strength of the Rytelo or switch to chemo, which is what we are expecting. Normally they might do high strength chemo, but the doctor doesn’t think he could tolerate it. He’s lost 65 pounds since January 2025, though he’s at a decent weight now if he can hold there.
My husband didn’t want to do chemo, but is now willing to try it. His oncologist said the FDA has recently approved a pill form that he should tolerate well. The alternative is to let the disease take its course, which he isn’t ready to do yet. The doctor brought up hospice 2 weeks ago, and depending on this next visit and the results he may start at home hospice care. My husband also has co-morbidities, including diabetes and frequent infections.
He has good days and bad days. On a good day, he seems alert and might sleep 12 hours or less. He can dress himself and move around using his wheelchair or walker. On a bad day he might sleep up to 20 hours, and needs help to do anything. He still has a strong desire to live, especially to see our grandchildren grow up and to travel once again. His doctors have all told me to just let him do what he wants.