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MDS treatment options other than bone marrow transplant
Blood Cancers & Disorders | Last Active: Mar 31, 2023 | Replies (60)Comment receiving replies
Thank you for this. There have been a number of permutations. At the moment I am taking the Enasidenib and the Alopurinel (not sure that's spelled correctly) every day, infusions for five days, then a twenty-eight day break. Monday--March 27--I begin another round of infusions. Mostly the side effects haven't been awful--headaches, generally feeling below par, and fluid retention, which is very troublesome, causing discomfort, and some pain, in my legs and ankles. There have been some that came and went--red, itchy blotches on my my hands and numbness in my fingers, for example. The doctor who has been director of the infusion center here is retiring this week, and I am curious to see who the next one will be. The center is a satellite of the Lombardi Center at Georgetown, and I often wish I had returned to DC when my husband died, but here I am in Southern Maryland. I do have friends here, which is a help, but sometimes I feel a bit far from civilization.
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Feeling below par is not unusual when we’re going through chemotherapy treatments and have a blood cancer in general.
The fluid retention can feel petty miserable too. I wore some mild compression socks during those days. Not the super tight TED stockings (unless directed by my doctor). Most of the time the lighter compression socks or calf sleeves were perfect. Just enough pressure to reduce the discomfort and keep my feet and ankles from being puffy. They really look like cute knee socks but graduate in compression from the ankles to the calves. They’re not super tight around the top of the calve to cut off circulation.
Of course, the standard treatment of elevating your legs when you’re sitting is important and walking…to keep your blood circulating.
This must be more difficult to go through alone so it’s a relief to have friends nearby. You’ve picked up a whole new family on Connect and we’re here for you anytime. ☺️
I hope you’re having some lovely spring weather!