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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
Hi @deemcrae Welcome to Connect. You’re doing everything just right and in the perfect support group to help you find answers about your MDS and treatment.
The medications you’re currently taking are the go-to treatments for MDS. They will help keep the proliferation of the blast cells under control. Blasts are immature blood cells which are not usually present outside of the bone marrow. If they multiply out of control, they eventually out balance the red blood cells and platelets. So the goal is to prevent that from happening.
I’ve only found one other person in previous conversations who has tried Inqovi. That was a few years ago and the drug wasn’t effective for them. They had an unusual diagnosis and required a different treatment.
However @tyson1221 (Howard) recently joined our support group in MDS, has a similar diagnosis with you and also isn’t able to receive a bone marrow transplant. Howard just started his first treatment of Inqovi yesterday and has been trying to speak with other members who have taken that particular medication.
Hopefully this conversation will bring other members into the mix with their experiences. Don’t hestitate to pop into any conversation and if you want to tag a specific person, you can do so by clicking the blue Reply button and typing in the little box that opens. That way the person will get a notification and their @name will be used.
I know it’s not easy getting that much water down daily. I struggled with that too. It was made easier by drinking room temperature water. I still drink at least 70 ounces daily to keep my body flushed. Do you find your electrolytes are ok? That’s one thing to keep an eye on. Sometimes that much flushing also removes essential minerals.
As with any chemotherapy meds, your blood numbers will fluxuate up and down during the month. Are the infusions and pills alternated during the month with breaks in between?
Regarding Invoq vs Azacitidine and Enasidenib, each med has its merit in treating the disease. It can be dependent on the particulars of the blood cancer’s finer points.
Have you spoken to your oncologist about your treatment plan and if it’s working for you to see if Inqov would be a better alternative?
Replies to "Hi @deemcrae Welcome to Connect. You’re doing everything just right and in the perfect support group..."
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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Thanks for your info Inqovi was the drug she thinks is best for me so I’m gona give it a few cycles an see how I do I am surprised more people are not on it which makes me wana get 2 nd opinion I don’t feel that bad an I just don’t want a treatment to make me worse but this is the bad position we are all in we hope an trust these docs know wat they’re doin