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.

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

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.

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.

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

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 

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

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.

Hello all, Well everything is still the same with hubby. Blood tests every 4 month, then a phone call from haemotologist, which lasts about a minute. I find he is tiring very easily but that is the only symptom(?) he seems to have. He has other problems but can't tie them to CMML, well not as far as we know. Hope you are safe and well.

Hello again KConn, I’m sorry I’ve been so inactive here but I’ve been juggling lots of stuff including Alex’s chemotherapy rounds. He’s just finishing his 11th round of Aza and until the end of December 24 his platelets were not holding for more than 5 days, almost every blood test came back under 10 and he needed platelet transfusions. He caught flu in November in the middle of a chemo round and I had to 999 him in into A&E. He, as always gave the flu to me but I wasn’t as sick as he was. 
But since Christmas his platelets have been increasing on their own and he hasn’t been transfused since. He has gained a little weight and looks so much better. After his brush with flu he has been getting hospital transport which has taken so much of the pressure off me.

But… they’ve been taking about a transplant again! I understand that they don’t know how much longer the Azacitidine will continue to suppress the CMML I asked about his blast count and it’s likely to still be quite low (2 in March 24) but Alex doesn’t get that he needs to be healthy enough for a transplant (that seems like an oxymoron I know) and waiting to long could jeopardise the recovery and success of the transplant process itself. But he’s still focused on the negatives that they have to tell you about any procedure.

Enough about us how is everyone else doing? I hope you’re keeping as well as possible.

Sorry to hear that about Alex he is going through the mill. I said in my last posting my hubby gets a phone call, a few days later we get a letter with his blood counts but I can see if thet have went up or down,but not medically trained I don't whts good and whats bad. i feel these things should be explained in the letter. I just guess.

Sorry to hear that about Alex he is going through the mill. I said in my last posting my hubby gets a phone call, a few days later we get a letter with his blood counts but I can see if thet have went up or down,but not medically trained I don't whts good and whats bad. i feel these things should be explained in the letter. I just guess.