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 have type 1 and I must say the Steroids  were great. I get tired very quickly and suffer from lots of infections. I see my consultant  again on the 9th. I hope your husband stays well. 

CMML is so rare that I struggled to find anyone on cancerchat with it. As everyone here is learning about it as we’re going along. I’m thinking that an exchange of thoughts and information would be helpful.

As I’m discussing someone else I’m just renaming him as Alex just for his privacy. He’s 62 and has been in relatively good shape all his life other than the usual (high blood pressure, type 2 diabetes and high cholesterol. He’s slim and tall.

I had to take him to the A&E with chest pains. Of course they did blood tests and his platelets were 19 and he was riddled with infection, so after pain relief for his chest, IV antibiotics and a bag of platelets he was told to return to the AEC the next day, there they found fluid on his heart and lungs and wanted to admit him but he refused and came home, I had to move a mountain the next morning to get him back there he was admitted that day, 14 days later he was given a bone marrow biopsy and the results came back about 19 days later it is CMML and he’s attending an appointment in a couple of weeks with another hospital.

is this in anyway similar to your experience?

Hi

I suffered from infection after infection bone pain had covid 3 times in 10 weeks very tired and wanting to go to bet by 7pm each night. Then I suffer from awful night sweats. 

My monocytes where high for over 6 months. I wad then referred for a Bone marrow biopsy at first it was inconclusive but the last slides proved 3 mutations  and confirmed CMML.

As I am at the beginning of my diagnoses I am unsure what my next step is.

I hope Alex receives  the right treatment. 

Hi, you, Alex and KConn are right at the beginning of this I’m hoping that we can help each other and others on this journey. Alex isn’t seeing the specialist for another couple of weeks and hopefully it’s type 1.

Hi Everyone.I was diagnosed with CMML in 2021.When I first joined group very few people on site with diagnosis.

I've been offered no treatment.

On a watch and wait program..

Had bad chest pains recently told fluid on lungs/ infection.Never had before 

Don't know if related to CMML.????

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

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