CMML diagnoses

I have been diagnosed with CMML recently, I have been given steroids to start with ,they made me feel so much better. I am concerned regarding the next step re medication.

I am tired all the time  sore mouth swollen glands constant infections, does anyone else have information regarding this. I had never heard of this before.

  • My husband has just been diagnosed with this after bone marrow test. Had been regular blood tests after having a lung operation. His monocytes keep rising. He hasn't spoken to anyone about this diagnoses as he was informed by letter. Not much information about it.

  • I was given a booklet, and prescribed Steroids they made a lot of difference. Hope he gets on OK. Its quite rare so fingers crossed meds will help.

  • Thank you for getting back to me, I will try and get the booklet. Hope you are well. 

  • Hello to you both, my partner of 38 years is waiting to see a specialist to find out what type of CMML he has. It looks like it has become symptomatic very quickly as he’s suddenly started getting nose bleeds having never had any before, his platelets are extremely low (under 30 instead of the normal 150+).

    We, as in the two of you and him and me could start communicating with each other about treatments, location etc.

    I found Bonny has given me a ray of sunlight that something as straightforward as steroids might help right now. I’ve got some experience of them as I have MS.

    I must admit I have done a very little research because we do not know as yet what type of CMML he has, also he will not do any research himself so I’m going to have to do it all and I’m no intellectual giant.

  • I think it would be good for us all to keep in contact . We have no information at all.

  • I have type 1 and I must say the Steroids  were great. I get tired very quickly and suffer from lots of infections. I see my consultant  again on the 9th. I hope your husband stays well. 

  • CMML is so rare that I struggled to find anyone on cancerchat with it. As everyone here is learning about it as we’re going along. I’m thinking that an exchange of thoughts and information would be helpful.

    As I’m discussing someone else I’m just renaming him as Alex just for his privacy. He’s 62 and has been in relatively good shape all his life other than the usual (high blood pressure, type 2 diabetes and high cholesterol. He’s slim and tall.

    I had to take him to the A&E with chest pains. Of course they did blood tests and his platelets were 19 and he was riddled with infection, so after pain relief for his chest, IV antibiotics and a bag of platelets he was told to return to the AEC the next day, there they found fluid on his heart and lungs and wanted to admit him but he refused and came home, I had to move a mountain the next morning to get him back there he was admitted that day, 14 days later he was given a bone marrow biopsy and the results came back about 19 days later it is CMML and he’s attending an appointment in a couple of weeks with another hospital.

    is this in anyway similar to your experience?

  • Hi

    I suffered from infection after infection bone pain had covid 3 times in 10 weeks very tired and wanting to go to bet by 7pm each night. Then I suffer from awful night sweats. 

    My monocytes where high for over 6 months. I wad then referred for a Bone marrow biopsy at first it was inconclusive but the last slides proved 3 mutations  and confirmed CMML.

    As I am at the beginning of my diagnoses I am unsure what my next step is.

    I hope Alex receives  the right treatment. 

  • Hi, you, Alex and KConn are right at the beginning of this I’m hoping that we can help each other and others on this journey. Alex isn’t seeing the specialist for another couple of weeks and hopefully it’s type 1.

  • Hi Everyone.I was diagnosed with CMML in 2021.When I first joined group very few people on site with diagnosis.

    I've been offered no treatment.

    On a watch and wait program..

    Had bad chest pains recently told fluid on lungs/ infection.Never had before 

    Don't know if related to CMML.????