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.

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.

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 

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