Living with MDS (Myelodyplastic Syndromes)

I just finished my 3rd round of Inqovi.

In my case the primary goal is to reduce blasts. However, that is being done to make my bone marrow able to produce more healthy blood cells of all types - similar to your husband's goal.

I have found Inqovi to be very mild in terms of side effects. The most pronounced effect of the drug is the temporary decrease in blood cell counts - these can be considerable and your physician should be monitoring very carefully - particularly that first round of treatment. I went twice a week for blood draws during my first round. My physisican adjusted the dosage for the following two rounds - reducing slightly from 5 days on to 4 days on.

My starting counts are relatively good so I don't feel anything when I'm on cycle with respect to low counts. I do get a bit of loose stool about two weeks after starting a cycle but that's really it. I think everyone responds a little different but in my case, platelets drop first, then begin to recover as neutrophils drop, which then begin to recover... rbc/hemoglobin drops slightly along with neutrophils but not to any extent that causes fatigue... its really the platelets and neutrophils that seem most affected by the drug in my case...

The first two cycles took about 6 weeks total before I was in a position to start the following cycles. My neutrophils stayed below the required 1000 level until about the 5th or 6th week after taking the first dose.

At about that 5th or 6th week, platelets, rbc, wbc all look pretty strong - back up in to normal territory so it does seem that the drug is working.

I have a followup biopsy in early May to see where my blast count is at and to determine the next steps - perhaps more rounds, perhaps watch and wait.

I'm also working with an intergrative oncologist to adjust diet, supplementation, etc - give myself whatever small edge I can in dealing with this. There are options out there that can help that are outside the current standard of treatment. No magic bullets of course but, like I said, anything that gives me an edge in battling this is worth it.

Question on Inqovi. My husband has been prescribed Inqovi chemo pills to increase his WBCs. Has anyone had experience taking Inqovi? Thanks!

Welcome to Connect, @questions2023. Inqovi is a type of chemotherapy to treat patients with MDS (and AML)

I found several other members who have made reference to Inqovi in treating their MDS. I’m hoping they pop into the conversation to share their experience with you.

I’m posting links to their comments about the medications first, followed by the discussion where the replies are posted.

@kva111 https://connect.mayoclinic.org/comment/1063768/

~Anyone dealing with MDS and how are you doing? https://connect.mayoclinic.org/discussion/anyone-dealing-mds-and-how-are-you-doing/

~~~~
@sherbs, https://connect.mayoclinic.org/comment/1218906/

~Does anyone else have AML with ddx41 genetic mutation?
https://connect.mayoclinic.org/discussion/aml-with-ddx41-mutation-anybody-else-in-the-same-boat/
~~~~~

@callahan
https://connect.mayoclinic.org/comment/1219841/
~Waldenstrom's: Should I take the new medication (rituximab)?
https://connect.mayoclinic.org/discussion/should-i-take-the-new-medication/
How long ago was your husband diagnosed with MDS? Has he taken any other medications for this?

Question on Inqovi. My husband has been prescribed Inqovi chemo pills to increase his WBCs. Has anyone had experience taking Inqovi? Thanks!

My husband was 69 at the time of his diagnosis for MDS and after his first round of chemo one doctor told him he wouldn’t be a candidate for the SCT but like your husband he has always worked out. Our hosp had just started a program where they have the patient do Physical therapy to regain their strength. He was one of the first ones and he did get strong enough for the transplant and is 2 yrs out. So even if he is tired and can ask the doctors for a physical therapy referral. In the beginning he was using a walker and hasn’t used a walker since transplant. One day at a time.

My husband, 73, was diagnosed with High Risk MDS 10/23, 8 months into retirement. He has had many BMBs, infusions of platelets and RBCs. Labs twice weekly. He has had 10 rounds of azacitidine shots. He has progressively gotten weaker. So weak he can hardly walk to mailbox. His counts are extremely low; so low sometimes his chemo is canceled. I feel he will roll over to AML soon. He is scared of SCT, but he’s been athletic all his life. It seems his only chance to live is SCT, and I am just waiting for him to decide. His doctor encouraged it when diagnosed, leavening the decision to him. His metabolic table is perfect. I grieve to see him so weak and unhappy.

Hi @girlmidget. My heart goes out to both you and your husband with this emotional MDS journey he’s going through. As his caregiver you’re no doubt feeling very overwhelmed and helpless. I watched my husband age before my eyes when I was going through my AML/transplant odyssey. This illness takes a toll on the patient and the loved ones.

The decision to have a SCT is very personal. The process itself can be challenging with chemo, medications and the lengthy recovery. There are also factors transplant doctors take into consideration before they clear a patient to go ahead. Your husband’s health has changed over the past year and a half since his doctor recommended a transplant at the time of diagnosis.

You and your husband might want to talk to his doctor to see if he is still a potential candidate for the procedure. If not, then that takes the stress off your husband having to make that decision. If he is a candidate, then the discussion might be valuable to give your husband more information where he may not be as fearful. What do you think, would that be helpful?