MDS-CMML-1: Anyone dealing with pruritus (itching)?

Welcome, @madhornet. I'm tagging a few other members who have experience with chronic myelomonocytic leukemia (CMML) like @jzier @beewoman70 @cblowers1 @okradurham @joannwkempel @don1stborn @joesim

Here are a few related discussions that you may be interested in reviewing: https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Itching&index=discussions

Pruritus (bad itching) can be associated with CMML or myelodysplastic syndrome (MDS). Madhornet, was it the itching that led to your getting the diagnosis? Has any treatment been recommend for CMML? Anything to relieve the itching?

My husband has MDS and he would itch so bad he would leave his skin bruised. Of course as he ages anyway the skin gets dry and thin. He just poured on the hydrocortisone cream like crazy. He did graph vs host disease after his transplant and that came with a bit of a rash but that didn’t bother him as bad.

Colleen - I had a hip replacement in June of 2020 and that is when the Dr saw my blood numbers were abnormal. My platelets are low (77) but still doing watchful waiting and not in treatment. About a year ago the itching started - no overt symptoms until then. I have bad itching in the mornings and after I shower. I am taking Benadryl and Fexofenadine but they haven’t really helped. I was looking for anything that might help alleviate the Pruritus.

Did the hydrocortisone cream help his itching?

Yes it did but he was very generous with it. Doesn’t hurt to try. Best of luck in your ventures.

I have had cmml now for two years they have tried different things but the pills they gave me was too strong and gave me problems with my bone marrow and they had to stop it. My blood count went to almost 0 now it’s going back up. I’m on nothing.

I was diagnosed with CMML 3 years ago and started being treated with an infusion of iron every week for 6 weeks and now have infusion of retactit every 2 to 3 weeks. This keeps blood level where Medicare wants it. I am tired and looking into B12 next 3 weeks.

Welcome to Connect, @sjkb. Having a blood disease where your body isn’t producing enough red blood cells can be, quite literally, exhausting. There’s not enough oxygen circulating in the system to keep you energized!
It looks like you’re now having Retactit infusions, which will help your bone marrow produce more red blood cells. What are current hemoglobin/hematocrit levels? Will you be talking with your doctor about the possibility of adding Vit B12?

I was diagnosed with Polycythemia Vera (PV) a year ago. The pruritus was a symptom before diagnosis. Hydroxyurea helped manage blood, but not symptoms, so now I am taking Jakafi in addition to Hydroxyurea and have very minimal itching now so I can shower and swim again!
What helped somewhat before showers was to apply thin coating of coconut oil over body, then after drying (without rubbing) off I still apply Trader Joe’s coconut body butter. It’s not greasy and doesn’t have overpowering coconut smell. And it’s not expensive.
Hope you get relief!

Glad the coconut oil worked! I have some for dry hair. I am going to try the shower trick.