MDS treatment options other than bone marrow transplant

Thanks for info will be starting Inqovi on Mon 20th

Good morning, Howard. I’ve only been able to find one reply with a member who had treatment with Inqovi. Here is a link to the conversation with @littlelindysue about her experience…it looks as though that wasn’t working for her so she went onto another treatment because of her type/classification of MDS.
https://connect.mayoclinic.org/comment/656252/
(The entire discussion on Myelodysplastic Syndrome (MDS): how to increase red blood cells?) is posted here:
https://connect.mayoclinic.org/discussion/mds/?pg=2#comment-656252
Because your other Inqovi questions have been buried in other conversations and maybe not being seen, I’m going to suggest that you start a new discussion about the treatment.
Then maybe more people would see that message when they search and can give you some insights.

Go to this page of the Blood Cancer Group
https://connect.mayoclinic.org/group/blood-cancers-disorders/
You’ll see a box that says, Start New Discussion.

You could put this in the heading: Inqovi for MDS. What’s your experience?
Then give a little description that says you have MDS and are starting Inqovi. You’d like to hear from others about their experience while on this treatment.

Let’s hope you get some members jumping in to give you some encouragement. It’s always a little scary starting a new medication. I was a walking pharmacy for a while so I can appreciate your anxiety. But the meds were a means for me to keep on living and enjoying life.
I’ll be thinking about you Monday. I looked up the medication and it looks like there is one pill per day for 5 days. Then you’re off for 3 weeks. It can possibly make you a little nauseated.
Did your doctor prescribe any anti nausea medication for you such as Zofran? (I used the Zofran sublingual tabs. They melt quickly).

Thanks for your info an yes since I’m starting Inqovi now I’d like to hear other people’s experiences with it thanks

I have CLL that was treated in 2016, 2017-2019. Hemaglobin rose to 15 million in 2020, which was long ago my baseline. But hemaglobin gradually dropped to less than 13 million by 2022. Baseline neutrophil and platelet counts also declined, Abnormal neutrophils seen under microscope, eg hypogranular neutrophils was a strong enough clue to order a Bone Marrow Biopsy with a MDS panel and some other tests. 2 of 20 cells at metaphase had genetic changes associated with a poor prognosis, Additional genetic testing was ordered, but could not be completed due to inadequate tissue / aspirant samples. The plan was to repeat the BMB in 3 months. However, I also had experienced heavy night sweats and worsening symptoms associated with spleen ischemia, for which there was no explanation, no diagnosis. I tried ivermectin for symptoms of a viral infection, possibly covid in June 2020, with fever and malaise resolved in an hour. Night sweats also ceased until I cut the dose to 12 mg daily, and stopped again with a 24 mg dose. No effect on hemaglobin and spleen pain. Given that doctors at Mayo and elsewhere offered no treatment options, I searched Pubmed for clinical trials and in vitro studies for CLL and MDS. I found that both Ivermectin and Hydroxychloroquine showed promise in combination with other drugs, but I could not find any report of IVM and HCQ being used together. Each have mechanisms of actions which might have additive or synergistic effects. So I continued with the Ivermectin and added a daily dose of 200 mg of hydroxychloroquine on August 1, 2022. Within 4 days the spleen pain went away and within weeks the sense of fullness in the upper left abdominal quadrants was history. By mid September my hemaglobin was 13.4 and slowly trending upward since then. Peripheral blood tests suggest that the MDS is not progressing, and dare I say heading in the opposite direction. I decided to not get the follow up BMB until I see signs that the MDS is progressing, The MDS specialist also ordered an Minimum Residual Disease test of peripheral blood, with the CLL count having decreased by 50% compared to 9 months earlier. My CLL specialist ordered me to stop using IVM and HCQ and refused to do any further diagnostic testing until I consent to have a BMB to further evaluate the MDS, I asked the hematology dept to assign a different CLL specialist for cause some months ago, but haven't heard back.

I had covid in March 2020 and possibly June 2022. In my comment I wrote June 2020 in error. I treated suspected covid in June 2022 with IVM

Hi Howard…thinking about you this morning as you start your new treatment! I know how scary it is taking that first pill…but it’s a means to getting your MDS under control!
So, bottom’s up…that sounds odd now that I see it typed out. My dad used to say Bottoms Up all the time when I was a kid such as when he drank a toast or if I had to take medicine, finish my milk, etc. hahah I digressed…sorry. Anyway, I just wanted you to know I’m here for you if you need to talk about your meds, how you’re feeling. Keep me posted ok? ☺️

Researchers are studying Ivermectin to see if it may be used as an anti-cancer drug and early studies show promise. Please note that this research is in the early stages (mice studies) and has not yet been tested in human trials. Ivermectin is not a proven standard treatment for blood cancers.

Ivermectin combined with other chemotherapy drugs or targeted drugs is being studied in early clinical trials and shows promise in patients for whom conventional chemotherapy has not worked in some cancer types. It may be effective against drug-resistant cancer cells.

IMPORTANT
It is not safe to take ivermectin that is commercially available. Please talk to your doctor before taking any over-the-counter medications or supplements that claim to fight or cure cancer.

Note Mayo Clinic Disclaimer (https://connect.mayoclinic.org/blog/about-connect/tab/disclaimer/)
- All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

Thanks for kind words an yes time to push thru gona golf Tomm an continue on best I can😎👍

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?

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?