1. < Blood Cancers & Disorders

MDS (myelodysplastic syndrome): When to start treatment?

Posted by tinytwiggy @tinytwiggy, Dec 1, 2024

My husband has lower risk MDS (SF3B1 mutation) MPN RS T . He has had chronic anemia that has been monitored for over a couple years. He also has a strong history of heart disease; had 3 stents placed in his heart on 3/12/24. He will have a femoral endarterectomy /angioplasty on Dec. 13th to help clean out his blocked arteries. (This was postponed from 12/3).
Dave has great hematologists who have recommended he start shots mid-December, to help boost his RBC/Hgb. They feel this will also help with his other medical conditions. Drugs mentioned were Aranesp, or Darbepoetin. There are other options like epoetin, Epogen, Procrit, but these were not mentioned in his plan of treatment. Just trying to sort everything out.
Can anyone share personal experiences on these meds and if they helped you, had any side effects, etc. He is a little fearful of starting. He is worried about side effects reported on some of the meds (especially heart attack and stroke). He also wonders once he starts, will it lead to needing more and more? Will it advance his condition quicker? Should he stay on the wait and watch plan longer?? He has been tired for a couple years now, so he has learned to deal with that the best he can. He wonders though, is this better than other side effects, or complications that could arise?
We know he has to do something at some point. Hgb. was 9 on 10/24 and up to 10.1 at his highest over the last year, or more. The anxiety of the unknown is a big part of the fear he is facing. He was just diagnosed on 4/15 so lots to learn yet. Any shared experiences and thoughts are welcome. Thank you so much!

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girlmidget | @girlmidget | 5 days ago
In reply to @loribmt "Good morning, @girlmidget. You’ve been on my mind the past few days…just wondering how you and..." + (show)
@loribmt

Good morning, @girlmidget. You’ve been on my mind the past few days…just wondering how you and your husband are doing. Has there been any improvements for him?
Sending a hug…

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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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Lori, Volunteer Mentor | @loribmt | 5 days ago
In reply to @girlmidget "Thank you for sending me your greeting. I was just thinking of everyone here, trying to..." + (show)
@girlmidget

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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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?

REPLY
tinytwiggy | @tinytwiggy | 3 days ago
In reply to @girlmidget "Thank you for sending me your greeting. I was just thinking of everyone here, trying to..." + (show)
@girlmidget

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.

Jump to this post

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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