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@twitt1949 I have been on 400mg twice daily acyclovir ever since my release from the hospital in April 2024. Levaquin 500 mg each day for 7 days when my neutrophils fall below .500. The side effects from the Levaquin are overall worsening body aches. The metal taste was predominate when I was on intensive chemo the first 6 months of treatment. My AML is in deep remission however I am now being treated with INQOVI for MDS. This has resulted in me losing my hair like when I was first going through treatment. I must admit I am very upset as this “side effect” is not mentioned anywhere in their literature or website. My pharmacist contacted the Manufacturer and they confirmed hair loss was possible but not common. I am going to talk with my Hem/Onc on Wednesday and see if I can go back to Dacogen/Venetaclax (was on for AML) to treat the MDS. I do not want to lose any more hair. Keeping prayers for all of us on this roller coaster called cancer!

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Replies to "@twitt1949 I have been on 400mg twice daily acyclovir ever since my release from the hospital..."

@sonieaml my oncologist told me when you go from mds to aml ..it does never go back to mds..conflicting i know. I had mds that advanced to aml....in remission now. I wonder in lori to find out ...she great with getting information

@sonieaml Be very careful with Levaquin. I have known runners who were on that for whatever reason, and it snapped their Achillies tendon.
I was on it for a lung infection over a decade ago and after three or so days all my joints were popping. Went back to doc and told him about this so we took a different route and the popping subsided a few days later.
Horrible stuff for our tendons. Be careful.