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MDS (myelodysplastic syndrome): When to start treatment?
Blood Cancers & Disorders | Last Active: Apr 21 10:28am | Replies (43)Comment receiving replies
Thank you for sending me your greeting. I was just thinking of everyone here, trying to remain prayerful for all. My husband is going to have to see a nephrologist due to his kidneys not filtering properly. His BUN and Creatinine levels are too high, and his eGFR is not good. We think it may be from the Tibsovo targeted therapy for the IDH1 gene mutation. His platelets have increased a bit to almost 100; they have been at 40-50 for a long time. His reds are very low, and his whites are almost in a safe zone. But as soon as he is able to receive the Azacytidine shots, they will no doubt decrease. Many of his chemo treatments have had to have been postponed due to too low blood counts. He is extremely weak and has lost more weight. It is very sad around our home. We are doing our best to remain hopeful, but it seems as soon as numbers increase, he is back on chemo getting worn down again.
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So sorry to hear you're husband isn't doing as well. It's such a hard thing to deal with. Hopefully the doctors can figure out a treatment plan that can bring him relief and comfort. Know you have a lot of prayers coming your way. Take care of yourself too. Stay strong and hang in there. Hopefully there are brighter days ahead. 🙏🙏🙏
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Hi @girlmidget. There are moments I really wish I could just reach through the computer to give someone a hug…because I simply can’t find the right words for comfort. I’m very sorry that there is so much sadness around your house right now. I know it’s challenging with all the rounds of chemo and that viscous cycle of ups and downs with numbers, energy and coping. You have my deepest empathy. Being the caregiver can be one of the most difficult labors of love imaginable when you feel so helpless in easing the discomfort of your loved one.
Reading back through some of your earlier replies it looks like your husband has been in treatment since late 2023? I don’t know if it’s appropriate for your husband but I’ve known of other long term chemo patients whose doctors have given them periodic breaks from chemo to let their bone marrow recover for a couple months or so. Has that been discussed at all?