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MDS treatment options other than bone marrow transplant

Blood Cancers & Disorders | Last Active: Mar 31, 2023 | Replies (60)
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@deemcrae

Hello--I am new to this, so not sure about how everything works; if I'm getting it wrong, please steer me in the right direction.
I have MDS with excess blasts3. At 83, obviously not a candidate for a transplant. My white count is critical--.78--platelet count is high--493--HGB (don't know what this is hemoglobin?) is low--8.8--and HCT (hematocrit?) is low 26.3%. Getting Azacitidine infusions and taking Enasidenib. There have been interruptions because of concerns for my kidneys, and I am taking Allopurinol. Trying to drink three quarts of water a day, which is not easy I find. I'm wondering about the difference between Azacitidine and Inqov. Is Inqovi better for slightly different type of MDS, or it it just a question of what one's oncologist feels is best for any individual patient?

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Replies to "Hello--I am new to this, so not sure about how everything works; if I'm getting it..."
Lori, Volunteer Mentor | @loribmt | Mar 21, 2023

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?

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