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

that was the same thing that happened to me. I’ve had that Cmml for over two years and the medicine they gave me was too strong and my blood. My white cell count went almost nothing now I’m taking nothing and everything is easing back up slowly. Thanks

this has also damaged my bone marrow, which made it quit producing now hopefully by taking no medicine or a minimum it will start working back again

Just have to take cool showers and perhaps take a Benedryl

My MDS-CMML-1 will be five years in July 2025. I see my oncologist every 90 days and still in watch, wait and test every 90 days. My CBC numbers for white, red, platelets, etc are always out of the normal range with some worse than others. My oncologist does not want to start treatment until absolutely necessary. My quality of life is pretty good although my stamina is low at times. My itching started to get better after being terrible - sometimes the itching gets worse and then it gets better. I tried multiple drugs - some prescription and some over the counter. Right now I don’t take any drugs for the itching but I use Dove sensitive moisturizing soap and when the itching is worse I use CeraVe Itch Relief Moisturizing Cream. I emphasize with everyone who has itching with their MDS- CMML because it certainly impacts your quality of life.

Hi
New to this group. Sorry to hear about your struggles.
Itchiness is part of the cancer you have. It really not a skin allergy situation but more to do with you blood.
Moisturizer will help considerably but should be applied every day after showers. Showers should be warm but not HOT water. Also when visiting clinics or hospitals you should wash all your clothing with hot water and when showering use Cetaphyl soap than asbestos free moisturizer!
All the best!!

I have had CMML/Myeloproliferative disease for ten years and have tried everything for itching. I currently take 10 mg Jakafi but still have some itching. Tried a higher dose but it caused skin cancers. Antihistamines don’t really help, although they make you sleepy which might get you through the night. Here’s what has worked for me. First, eliminate anything that might cause itching by using a good soap (I use Bioderma Atoderm) and detergents like All free and clear. Immediately after showering I use jojoba oil all over my skin. It’s not really an oil—more like a wax so it absorbs well. It washes out of clothing and I really use a lot. And I sleep with an ice pack. I get refillable ice bags with a clamp closure on Amazon. The ice seems to stop the itching faster than cortisone and is a lot less expensive. After many years of trying things this is what is working for me. Good luck to all of you.

Welcome to Connect @sme225 Oh gosh, itching is the worst, isn’t it? I had AML 6 years ago and can empathize with what you’re going through. So thank you, on the behalf on anyone going through this, for sharing what has worked for you to alleviate the itching. Hopefully it will bring relief to someone else.
It appears your condition is being well controlled with Jakafi. Have there been any changes over the past 10 years in your blood numbers?

My white cell count has gone from 100k to 29k but my red cells, hemoglobin and platelets are all very low. It works, but there’s a trade off.