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CMML diagnoses

Bonny2024
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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.

  • Offline in reply to uncle

    Thank god I posted on this forum. I seem to be very well in comparison to fellow sufferers. I did have a shingles jab a while before diagnosis, but I believe my symptoms started at the end of 2021 so luckily for me no side effects from shingles shot. My first diagnosis was skin cancer due to the tiny red pin pricks on my lower legs fortunately I asked for a biopsy and this proved capillaries were slightly leaking into skin. At the time I was taking clopidogrel blood thinners but because platelets were low haematology took me off them. Soon after the tiny blood specks disappeared. I suffer thrombocytopenia and neutropenia plus monocytes have risen. At diagnosis I had 10 abnormal levels on my blood count I now have 5. So basically at the last blood test my blood is in better condition than a year ago. Unfortunately I have osteoarthritis in both shoulders and that has been dreadful. X ray revealed a bone spur in my right shoulder. All part of ageing I suppose. CMML apparently has had nothing like the research of other leukaemias

    Best wishes to all

    Uncle.

  • Offline in reply to 33Archersmate

    Alex is back in Hospital! Another chest infection, platelets down to 12. Looks like he won’t be seeing the specialist at Hospital now. They’re having a meeting tomorrow to discuss what they need to do next. Incidentally his blast count was 2 a few weeks ago when they did his bone marrow biopsy.

  • Offline in reply to 33Archersmate

    Unfortunately I made a mistake in my last post naming a hospital and doctor who have wide knowledge of CMML. If you go onto u/tube and enter CMML into the search index you will see info from many genuine medics with expertise in this area. Apologies for my error.

    Best wishes 

    Uncle.

  • Offline in reply to uncle

    Hi all, haven't heard from anyone for a while. I am hoping this is a sign everyone is doing ok. Has anyone had any further info on this illness

  • Offline in reply to KConn

    Hi. K.con I am doing quite well. I do have some very controversial theories but I don't think it would be right to go into this on this forum.

    I will say I think we could be in for a massive shock in the next twelve months or so. Had a bad day today. The arthritis diagnosis I expected is suspected Poly Myalgia. X.rays of hips tomorrow and another blood test. Last night my left eye decided to leak blood. Had them before so not to concerned. Just my low platelets makes me worry a little bit. My haematology blood test other than platelets was quite stable last week. Hope you are ok.

    Take care uncle 

  • Offline in reply to KConn

    Sorry for being quiet, Alex started Azacitadine chemotherapy on Monday they’ve gone straight for the hard stuff. One of my many complaints is that they don’t communicate properly with us and have not even told him whether he has CMML type 1 or 2 (amongst others factors) It must be type 2 or surely they would have gone for a less aggressive treatment!  

    There’s been a lot of drama this week but nothing to do with the chemotherapy, some of it was due to hospital not communicating with each other properly.

    We were naturally very scared of this treatment and I suspect that most people would be scared of chemotherapy, but it might make his cancer go into hiding for a while and hopefully improve his blood counts while he’s coming to terms with a possible bone marrow transplant, if he’s got a match, if he’s prepared for it as it’s quite risky and if he’s healthy enough for it. And  if the chemotherapy works we might get some extra time to resolve domestic issues (like getting a will and sorting through the horde of stuff that he’s collected that neither of us need, particularly if he isn’t going to live a long and healthy life, tools, artwork, clothes, art materials, furniture and sports equipment to name some of it.

    CMML is very complicated and I’m struggling with what happens now and next and it’s exhausting for us both.

    He’s been referred to a big London hospital to see a specialist who had nothing positive to say about CMML and Alex broke down the weekend after his meeting as all he took from this was “I’ve got 18 months to live” 

    He’s been attending our local hospital for tests and now treatment and I keep calling it the little hospital although it’s not, it’s not well known where as the big hospital where his specialist haematologist works is well known, certainly in London where we live.

    Cancerresearch recommended that I ‘Jump ship’ to one of the other blood cancer websites which I’ve visited and have found others with CMML or similar conditions and found that some of the comments were very informative. If you haven’t already found them please have a look at Bloodcancer Uk because it’s specifically about blood cancer there’s a lot more information.

    Wishing you all well

  • Offline in reply to 33Archersmate

    I have CMML and have seen on blood tests and reports that haematology regularly put probably CMML type1. They have also said possibly CHRONIC MYLOID LEUKEMIA.! Very confusing. I personally think that control of progression is the best we can hope for. We regularly read in the press about new miracle cures for many types of cancer that never come to fruition. ON the plus side a neighbour of mine had lymphoma for thirty years and passed away in his mid eighties .His lymphoma was never cured but was controlled. I say stay positive. I read some statistics that said at the time of my diagnosis about 3 in a million developed CMML in the UK but the latest data suggests 11 in a million are diagnosed in the UK per annum. I am on watch and wait and thankfully my blood tests are better than they were at diagnosis. 

    Take care

    Uncle.

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