Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
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 Flowers67 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.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi I’m sorry to hear about your chronic itching.
My husband was diagnosed with Cmml in May and has just finished his 5th course of chemotherapy. I don’t have any help for your itching but I am interested to hear how you have adjusted to life with cmml. We are still trying to get our heads round this diagnosis and apart from treatment every month we are not sure what we can do or where we can go. The fear of infection mainly being the reason. Have you had many infections since your diagnosis? Have you travelled much since your diagnosis? Has your energy levels increased at all since starting treatment. My husband gets 2 injections every day for 7 days each month. So far he hasn’t needed any transfusions. I would be interested in hearing about your journey so far as we haven’t been talking to anyone else who has been diagnosed with cmml.
I hope someone on here can offer you help.
Look forward to hearing from you
Hi Rosebud3, 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.
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