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Dana, Volunteer Mentor (@danab)

Low Iron Levels and Weakness

Blood Cancers & Disorders | Last Active: Jul 8, 2021 | Replies (19)

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I, also had very low iron levels, 90 days after Auto SCT. My Bone Marrow Biopsy, at the time,, also said "no iron stores". I recieved 2 iron infusions, and my iron levels have been normal since then. I also developed hypo thyroidism, found after the iron was corrected, and am now on medication for that. My thyroid level is coming down, but I still have fatigue and weakness, which is a side effect of my high dose maintenance, Pomalyst. The chemo and then the SCT did a number on me. I nap when I feel like it. I was told last week, that I have reached Stringent Complete Response, so our prayers have been answered. I am a long way from my normal, but take one day at a time. I hope they find, and correct your wife's issues. Best wishes to you both!

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Replies to "I, also had very low iron levels, 90 days after Auto SCT. My Bone Marrow Biopsy,..."

@lisal64 You just had your 1st transplant birthday this month! That’s awesome! A hearty congratulations and a huge smile for reaching the Stringent Complete Response! That’s the ultimate goal of using your own stem cells for remission of multiple myeloma. I’m thrilled for you because I know this hasn’t been easy by any means but it’s a positive milestone in your ongoing journey of recovery. You must feel pretty energized mentally with that good news!

I am sorry you’re having the side effects of the medication your taking.
The fatigue and weakness from the Pomalsyst would be really frustrating to cope with. Especially now after hitting a secure remission point, you want to get on with life at full speed. Chemo and the transplant does take its toll on the body. Having an autologous SCT you were spared any graft vs host issues but it doesn’t come without its own share of recovery issues and collateral damage. The first year is the hardest so keep the faith! You’re doing amazingly well and your positivity will keep you propelled! ☺️

How long will you be on the Pomalyst? Is this a long term maintenance medication that can be reduced or eliminated over time?

Wishing you a steady recovery, Lisa! Lori

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