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.

  • I am sorry to hear this. I have had Steroids which helped me already. I  have bloods every 3 weeks. I would check with your Haematologist  to see if they can help. My consultant is amazing and supportive.  Good luck

  • My husband has COPD, in 2021 he had a part of his lung removed, that is when they picked up that his monocytes were raised. He has had blood tests every 6 months. inOctober his monocytes raised to 4.6, that is when they decided to do a bone marrow test. After the test he was seen by the consultant, previously it was just phone consults, he was told they had sent his bone marrow results away for further tests. Three months later he got a phone call telling him, he would get a letter with results. On the 18th March he got letter saying he has CMML. No other explanation. Told he would have blood tests every 4 months. Do you think that he has probably had this working on him since they found the raised Monocytes in 2021. He is 72 in July.

  • Hi

    Sorry to hear about your husband. I can only say from my experience I have regular blood tests.

    I was monitored  from last August my monocyts are ever increasing .

    I would ask his haematologist  for a chat as we are all different. I get tired very quickly, this was explained  to me in detail. Never by letter. I think that was awful for you both.

    I hope  he stays as he  can.

    Best wishes.

  • Hello Strawberry,

    Alex and I were talking last night and I told him it’s my belief (could be complete rubbish) but I think he had a chest infection for weeks and didn’t recognise it, but because of the CMML his body couldn’t fight it so it might have turned into the fluid buildup that he had that landed him in hospital.

    It could be that your own situation is similar.

    He’s brought back wearing masks on buses, et cetera because he realises now after being given penny lectures by myself how vulnerable this condition makes you to infections but we are both questioning whether or not he now will needs a shingles jab I spoke with my doctors surgery yesterday and they have said that their healthcare assistant who does vaccinations is currently away and I need to call next week.

  • Hello again Bonny,

    Regarding “Leaflets”

    I’d love to get a leaflet that is clearly written in non medicaleze but after asking and being told that Alex doesn’t do tech the haematologist gave us several pages of content that is extremely difficult for non medical patients to read Alex won’t even look at it he avoids reading anything and wont even read notes I’ve left for him usually, so something simple would be fantastic, even if it is just for me.

    Hope you’re well 


  • Yes I think you might be right had pains in chest for awhile.Thought it was muscular pain.When didn't improve went to Drs.Had CT which showed fluid/ infection on antibiotics and will have another CT at end of month.

    As you say CMML weakens your immune system making you susceptible to infections etc...

    Regarding shingles vaccine 

    I had few months back.

    The regular vaccine is a life virus so not suitable for people with  CMML with suppressed immune system 

    I had two separate vaccines suitable for people with suppressed immune system First vaccine given and second two months later

  • Hello again, continuing our discussion. Alex has a first appointment next week with a Leukaemia specialist in London (we live here) any questions that you can suggest we ask? I’ve got some but I’m not sure if it’s enough. As we’ve been told nothing really about CMML and the printed stuff was written in medicaleze that even I didn’t understand (and I don’t have special needs like Alex does) my check list is: do you have a treatment plan? how easy is this likely be to treat? How effective is the proposed treatment? How will we know if it’s working? Is there anything that he needs to stop doing? Is there anything that could stop the spontaneous bleeding?

    I’m struggling to think of anything else right now and I know Alex is clueless, he’s getting more and more anxious and theres been some tantrums about everything and we’ve also been dealing with some domestic problems not of our making. Because there’s a part of his nature that is childlike he blows everything out of proportion and downplays serious issues, he thinks that this isn’t going to have any impact on his lifestyle either in the short or long term.

    I think I’m going to need long term help with this but don’t know how to get it.

  • Hi

    That's good news re Alex appointment.

    I would write fiwn anything that comes to mind. E.g.

    What is Alex symptoms that youvwant answered, the ask what can be done about them.

    Is there a Pacific  plan of treatment that may suit him best ,we are all different. 

    How often will he needs his bloods done.  Is there any way you can have an easier information pack in layman's  terms. I quite agree the information is a tad complicated.

    What type of CMML does he have 1 or 2? 

    My husband has not taken it in as yet so completely understand how frustrating this is to you. 

    I am a strong person but struggle at times to understand this condition on a good day.

    On a bad day I am exhausted  in pain and have constant infections.

    I am starting immune suppressant  meds now and hope they stop some of my symptoms.

    Good luck, I hope you get some answers

  • Hi, I hope you don't mind me asking but do you not have a consultant Haematologist? Have you not been given a oncology team contact number so you can ask questions and generally let them know how you are? If not ask for support.

    You need this help to understand  and get the right treatment.

    Good luck

  • I was diagnosed with cmml last may. On watch and wait.

    Still well, to old for stem cell transplant. Blood count rises and falls but the trend is stable. Came out of the blue,  symptoms started October 2021 diagnosis may 2023. My neutrophils and platelets are on a roller coaster.