Hello ,

[Doremefasol]

I was preparing for the CarT study to be continued. I had my apheresis a few days ago, but I just learned by phone from the lead doctor that they are canceling my participation because they discovered that I also have a MYLO DISPLASTIC SYNDROME. I AM DEVASTATED AND IN SHOCK. Is there anybody who has heard about that?

[CLLerinOz Administrator]

I’m so sorry to read your news. It’s hard enough gearing yourself up for a treatment like CAR-T without having the rug pulled out from under you at the last minute like this.

Earlier this year, another member, DaveCll , asked if any others had faced a diagnosis of CLL and a myelodysplastic syndrome (MDS) and that post includes a reply that provides a link to a list of other relevant posts: healthunlocked.com/cllsuppo...

A 2022 article that explored the incidence of MDS in CLL in the era of modern, targeted therapies noted that the incidence of MDS in those with CLL is relatively rare, as high as 3.5% and “chemoimmunotherapy (CIT) treatment for CLL likely contributes to the occurrence of MDS”.

“There is little published data on the characteristics of patients (pts) who develop sMDS with antecedent/concurrent CLL, particularly in the era where kinase inhibitor therapy has displaced CIT. Therefore, we sought to characterize a cohort of CLL pts who develop sMDS in the era of modern treatments.” ashpublications.org/blood/a...

It’s an awful time of year to receive news like this but I hope it won’t be too long before you get a chance to meet with your medical team to discuss what this means for you so you can get a sense of your way forward now.

CLLerinOz

[Doremefasol in reply to CLLerinOz]

Thank you. For now, I am just trying to make sense of everything.

[Spark_Plug]

No doubt that you're bowled over, but prompt discovery is better than ineffective treatment. I found this:

Living with CMML

"Many patients with chronic myelomonocytic leukemia (CMML) continue to live full lives after their diagnosis and are minimally affected by their disease".

Patients with more advanced types of CMML frequently have more symptoms, and may experience side effects related to their treatment. However, even with more advanced forms of CMML, patients are living longer lives because of better diagnosis, new therapies, and cancer research. [ pennmedicine.org/cancer/typ...]

As yours has not been diagnosed chronic myelomonocytic leukemia, it could go different ways. Myelodysplastic Syndrome [same source] "There are several types of myeloproliferative disorders, and each require their own type of unique treatment". The key is TREATMENT, there are steps that can be taken, so stay hopeful.

Addendum:

My point, even if it is eventually diagnosed as CMML, is that you're not without hope. Further, there are some Myelodysplastic Syndrome variants that do not progress.

[Doremefasol in reply to Spark_Plug]

Thank you for your kind word

[Jm954 Administrator]

I'm so sorry to hear that you now have this to cope with.

There are several types of MDS which vary in degree of severity and prognosis depending on the cell line affected, if it's multiple and the genetics.

MDS is very different to CMML. You will need to wait to see your doctor to discuss what your particular diagnosis means for you.

Jackie

[Doremefasol in reply to Jm954]

Thank you. I am in the stage where I still think this is only a bad dream. I am going to try to find some literature whenever I can put my brain together. I realized that MDS is much different than CMML. I am waiting; after New Year, they will have a genetic study done. This, of course, is another big worry because of my child and the grandchildren.

Thank you very much CLLerinOz, Spark ,and Jm954

[thompsonellen2]

I'm very sorry to hear about that. I just went through apheresis and if someone told me CAR-T was off I'd be freaking out. Have they discussed a new treatment plan? I am thinking of you.