Hi, don’t really know my way around all this conversation / advice thing, but I have had CMML for 3 years now and fortunate not to need any intervention as yet , however what I am really struggling with and have been for 2 years now is chronic itching, really bad, I have been under dermatology with various lotions non of which worked, I have seen a neurologist , without any luck, My. Consultant at the hospital just changes my medications one after the other but to date nothing is working. This condition is horrendous , it mostly presents itself on a night time for some reason, and can last for up to 4 hours at a time. Sorry for going on but I seem to be going around in circles and not getting anywhere just wondered if anyone had/ is experiencing the same.
Good morning and a welcome to this corner of the Online Community. I see that you have been using our Ask a Nurse and Our Heamatology Nurse Caroline in the past, I do hope that thy were able to help.
I am Mike Thehighlander and I help out around our blood cancer forums. I was diagnosed in 1999 with a rare skin Non Hodgkins Lymphoma. Yes, it is rather different from your CMML but I do totally get the itchy skin thing as this was me for 14 years before we had to start full on treatment.
I was also under an amazing Dermatologists for those 14 years and we tried every lotion and potion under the sun. Some worked for a time them we had to move on to the next best thing. You can see my story by hitting my forum name Thehighlander
Over those 14 years I must have had over 900 visits to Dermatology for clinics and treatments going though every steroid cream, 20 weeks every year (2/3 times a week) for UVB then PUVA light treatments.
Over these 14 years the condition looked like I had very bad Psoriasis and I often had a 70% body coverage. My condition moved through all the stages up to 4a2.
At times I had to ware special padded dressings over all the tumorous areas as the tumors would continually bleed. At times we went through a new set of bed sheets every night as they would get covered in blood. I also had Interferon alfa (a) injected weekly subcutaneously under all my tumorous areas and various drugs including Acitretin and finally Bexarotene...... then everything went wrong. So in some way I do understand.
I used to go to bed in good cotton, oversized PJs with the areas of my skin that were bad covered in Hydromel Cream. At times I would ware cotton socks and gloves after covering my hands in Hydromel all to try and cool down my skin as the heat in bed can make the skin react.
I always used Dermol products for washing, showers and even to shave.
I am not giving you any answers that may help you but am giving you a knowing ((hug))
This forum is slow as there are not a lot of folks active but let’s see if any of the others will be along and you could put a question to Caroline.
((hugs)) again.
Hi , welcome to the Community, although I have a different type of blood cancer I understand the ‘walk in the darkness’ does improve as you understand the journey more...... I am 20 years into my journey and I have to say that things move and improve over the year’s.
Keep posting as we will do our best to help.
