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.

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 well.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 

regards

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

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.

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.