Living with MDS (Myelodyplastic Syndromes)

This - and others who have posted similar - is quite helpful as it seems am beginning to head down this path. 6 months into bloodwork to figure out what / why I was not feeling myself last fall while training for another 50k trail race and legs feeling like ice on the inside.
Initial discovery was Leukopenia along with known slight anemia (known for some endurance runners) in January.
Six months in and latest results are WBC's have recovered a little bit though still 3.8, RBC 4.0, Hgb 12.3, HCT 38, and PLT Ct has been on the decline though still normal from 288 down to 239.
Hematologist has said she is suspecting MDS now that other things have been eliminated. Next round of bloodwork in Aug and she said plainly if Hgb goes below 12 it'll be time to do a marrow test.
I'm starting to experiment with sound waves btwn 10 - 90 MHz listening to these in headphones and then also placing on my legs. Worth a shot!
Anyway, I am blessed to have found this forum and is amazing to read these experiences / what folks go through and the resilience found in many words.
Cheers

Well I got my results back from my blood test and the hydroxyurea brought my white cells down my platelets are good and my red cell count is low I guess 88 but the results from my bone marrow biopsy came back that it had progressed fyy to I’m CmmL to AML. So my oncologist is meeting with the tumor board next week to discuss my treatment. She thinks I need to do chemo. The itching isn’t bad now since I have been taking loratadine. She talked about a drug called atarax if I still get itchy. I don’t know what yo think. I know AML is aggressive and whether the chemo will work. I feel much better on the hydroxy so I wonder why she just doesn’t leave me on that. Intake 2 500mg Monday yo Friday and 1 500mg Saturday and Sunday.

Hi @jacklyn, Well shucks, those weren’t the results you were hoping for with the blood work. It seems your CMML has progressed to AML. Whether or not your doctor will keep you on hydroxy will depend on what type of AML you have.

Hydroxy is generally not a first line treatment of AML. And since it didn’t appear to help keep your CMML from progressing to AML, they may need to move you forward to another type of treatment.

Itching with my AML, used to drive me to distraction…so I’m glad you’re getting relief with the Loratadine! Atarax is another type of antihistamine which can help with the itching. It can provide a little sedative effect which also reduces anxiety. But it can make you a little drowsy, so if the Loratadine is working then stick with that for now.

I know this news can leave you a little unsettled as to what to expect. If your doctor recommends chemo, just keep in mind you’ve already been on a form of chemotherapy with the hydroxyurea. The term can be intimidating and the bejeebers out of people. But chemo can be a life saver! When you find out more, we’ll work through this together, ok?

Did your doctor order any further testing such as a bone marrow biopsy? Do you remember if your blood results mentioned the term, blasts?

I just did a bone marrow biopsy. They sent my results to two of the top hospitals in Montreal. This is where it was confirmed AML. The last bone marrow biopsy last year was it was CMMLborderline AML. I still have itching not as bad but my fictitious did mention atarax so I might try it. I am on antidepressants and clonazapan but they don’t make me tired. Just not sure if atarax would interact with clonazapan. I guess they would know. I would take it at night.

I mean they sent my biopsy to two of the hospitals.

Hi Jacklyn. If you’re already on antidepressants and clonazepam make sure your doctor is aware before you start Atarax or check with your pharmacist for drug interactions. For now, if the itching is responding to the Loratadine, maybe stick with that for a while. You may find that when you start treatments for AML that the itching may go away.

Do you have an upcoming consultation with your oncologist to discuss treatments for your AML?