MDS treatment options other than bone marrow transplant

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?

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

Howard, Inqovi is a relatively new drug on the market for a few years, targeted for MDS and AML. Breakthrough drugs are developing as more research is being done with blood cancers. So just because you’re not hearing much from others about it, doesn’t mean the medication isn’t the right treatment for you. Most people tend to comment with complaints or concerns. I’d take it as a positive that we’re not seeing indications of negative side effects. Stay the course and see if this works for you. 😊

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?

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.

Hi all finished my first cycle of Inqovi had another transfusion an feel around 75 % curious to see how next few weeks make me feel

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!

Good morning, Howard. Generally, chemo taken in cycles such as yours, follows a monthly pattern. About a week or so after your last dose, your blood numbers will have fallen significantly…white/red and platelets. That may leave you feeling pretty fatigued and possibly some nausea. Or you may not feel much at all. Everyone is different.

But that is the usual reaction to chemo because the goal of the drug is to stop the proliferation of the quickly dividing cancer cells. Unfortunately the chemo can’t discriminate with cells and so it will also deplete your entire blood count. The lowest point of this cycle is called a nadir period. (You can read about that online) At about week 3 your marrow will start increasing the production of cells again and your energy should return…just in time for your next session.

From experience, I have a few guidelines for you:
One thing to be aware of, this lowering of your white blood count can leave you more prone to illness and infection. Sometimes people on Chemo can develop what’s called a neutropenic fever because of the severe drop in the white cells. It’s important if you feel ‘off’ to take your temperature. If it reaches 100.4 for more than an hour, call your hematologist for instructions.

Try to avoid situations where you have exposure to sick people, wear a mask in public settings, wash hands frequently. Make sure you wash fresh fruit and veggies well, cook foods to proper temps, etc. Another thing to be mindful about is gardening. I don’t know if you’re a gardener or not but wearing a mask and gloves when working in soil is important right now to avoid fungal infections. I know, life just got a little more complicated but this is how I’ve lived for a few years now and it’s all doable. ☺️

Occasionally when taking chemo, platelets will drop to a very low level. If you notice nose bleeds or unusual bruising or prolonged bleeding from cuts that warrants a call to your hematologist. It’s not uncommon to need platelet infusions when taking chemo.
Will you have any followup bloodwork between cycles?