Living with MDS (Myelodyplastic Syndromes)

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.

That’s wonderful for you and your husband. My husband, I don’t think, could handle physical therapy. But maybe he will ask about it. I’m just hoping he can feel safe with the possibility of SCT.

I have been diagnosed for 1 /2 years but had symptoms for well over 2 years. We are going to try injections to improve my quality of life. My only issue is fatigue.

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?

He was diagnosed 4 months ago. He has received 6 injections of Anaresp for anemia, which had "mixed" results.

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.

Thanks so much for the details that answer a lot of questions!

Hi! My husband was just dx Today with MDS.The ref matl we received is scary. It’s a neoplasm according to the sheets but his doc said it is pre leukemia. He is being referred to Mayo Clinic for registering for transplant if the chemo he will start on Monday doesn’t work. My husband thinks it isn’t chemo or cancer but all the literature we got says chemo and MDs is a neoplasm. So confused and scared. Any good news will be appreciated ty

cindyborch,
Tomorrow for sure you will have great informative posts to ease your mind. Many of us here had MDS. I will say rarely do we have the same diagnosis, but treatments, feelings, and living through it is a lot alike. I just hit one year past transplant. MDS is not as scary, as it has not progressed to leukemia. More details will tell the story on his blood. As he had a Bone marrow biopsy? Mayo clinic would be a good place to connect to. As I said, many will post some possible stops to take at Mayo and above all else, know caregivers are supported here too.