@Sisi , @Unclejack , @ChrissyD , @Erica
Hi all, I have previously put a couple of posts up but have never shared my ‘story’ and I feel ready to share now, particularly with you guys as I’ve been reading all your posts and can totally relate with you all. Apologies for not introducing myself earlier! In Feb 2025 my 55 year old husband was diagnosed with Chronic myelomonocytic leukaemia (CMML) 0. We have since learnt that 0 doesn’t exist anymore so I guess it’s Chronic myelomonocytic leukaemia (CMML) 1 although our local haematogist still refers to it as 0! It was a huge shock as he’s fit and healthy with no symptoms. It was discovered through abnormal routine blood tests. He had a BMB which found ASXL1, SRF2, and TET2 mutations. We requested a second opinion from Kings and this was done through teams call. They confirmed what we knew but we do have an appointment in person at the end of May. Since then after much research ( I never stop!) we have come across the amazing Dan Wiseman. I am in the process of getting a teams call organised with him. Wish we had done this first but getting 3 opinions isn’t too bad! He is on W&W and hopefully 
will remain so for many years This forum has been incrediably reassuring and informative in what is a very scary, unknown, worrying time. All your advice and updates are much appreciated 
Hi @Logsie Great to read your post & lovely to meet you & hear your story. So good to hear that you’re waiting on a second opinion from Kings & the possibility of a third opinion from Dan Wiseman. As you probably read on previous post, we saw him last month. It was a very good consultation & so grateful to @ChrissyD for recommending him. I can completely relate to all the research you’ve done / doing. It’s exactly what I’ve been doing these last 6 months. I can’t help but want to inform myself. Having said that, there is a point when I’ve realised I just need to stop with the researching! 
Getting a second opinion really helped. And you are so right…this forum has been a complete God send, I really don’t know what I’ve have done without it. So much support here. I wish you and your husband all the best with the upcoming appts & keep us updated with how you get on. Best wishes
@Sisi thankyou for your kind reply. Yes your meeting with Dr Wiseman and @ChrissyD, inspired me to push the appointment with him! I think the secretaries and overseas department (we live in Channel Islands) must be cursing all my emails! I too reach a point where I’m not going to research anymore…then I just think ‘oh I’ll just look that up’! I hope you and your husband are coping ok and reassured with your recent visit to see Dr Wiseman which totally gives my hubby hope x
Yes completely! I’ve learnt so much over the last few months. Even Dan Wiseman said he was impressed with my knowledge 
I felt a bit embarrassed! And don’t worry about all the emails…you need to do what you’ve got to do! And yes, very reassured after Dan Wiseman’s visit. We just felt very grateful that we had the opportunity to see him & were in excellent hands. We are doing well, thanks. I hope the weather is as good with you as it is here ..gloriously sunny! 
It certainly helps lift the spirits. Best wishes to you xx
Hi @Logsie @Sisi @Erica @Unclejack
I’m so pleased you are getting an additional “additional” opinion. Between Dan Wiseman and King’s you probably couldn’t get better care. I don’t know why your clinicians in the CI are resolutely holding on to the Chronic myelomonocytic leukaemia (CMML)-0 category as it’s been defunct since 2022. A bit worrying I’d say!
It will be interesting to hear what Dan thinks especially in view of some of the mutations your husband has. But, having been involved with some people who have been pressurised to join trials or undergo stem cell transplants when they were actually not experiencing any symptoms, I would personally be a bit cautious. The great thing about Dan is that he is very honest and realistic about the treatment options for Chronic myelomonocytic leukaemia (CMML) which, sadly, are not many. Wish you a successful meeting.
Hi @ChrissyD Yep, the whole classification thing with Chronic myelomonocytic leukaemia (CMML) 0 & 1 is weird! Kingston & St George’s both referred my husbands to Chronic myelomonocytic leukaemia (CMML) 0. I tried challenging the Haematologist at Kingston about this but didn’t get very far! Oh well. Happy weekend to you 
Thanks @ChrissyD for the info. There does seem to be some confusion over this! Either way, whether 0 or 1, the criteria remains the same. I shall point it out when we meet with our local haematologist on 1/5/25. Just heard from Christie’s and an invoice is in the post for us to pay the cost so hopefully that call with Dr Wiseman will be made soon. Weather here is glorious! But don’t think it’s lasting long!
Ha! It’s a bit concerning, isn’t it, when patients and patient support charities are more up-to-date than their medical advisers!! But as you say, @Logsie , it doesn’t make much difference. I was just personally a bit peeved to be “upgraded” by WHO to Chronic myelomonocytic leukaemia (CMML)-1 from Chronic myelomonocytic leukaemia (CMML)-0! But then again, when I was first diagnosed, Chronic myelomonocytic leukaemia (CMML) was a sub-type of Myelodysplastic syndrome (MDS) but now it’s more “special” so you win some, you lose some! Whatever it’s called, mine has effectively been the same for a long time so I shouldn’t complain!
Are you having to pay privately because you live in the CI? I’m sorry if that’s the case -thought you still came under UK for NHS purposes?
Hope you hear very soon as the waiting is very frustrating when you’re first diagnosed. I must have been a right pain in the proverbial for my local consultant -phoning and writing and asking lots of questions!! I’m less bothered now -partly as I’m not convinced of how knowledgeable many clinicians really are! I’ve been personally told and heard about some absolute nonsense being told to patients and it’s sometimes hard for me to keep my thoughts to myself!!
Lovely weather here and off to play for the evening with 2 of our grandchildren while their parents have a rare theatre visit to see the crazy Harry Hill! 
Hi @Logsie
In case you haven’t found this yet, this is a fairly recent prognostic tool developed specifically for Chronic myelomonocytic leukaemia (CMML) patients, using known info about mutations and blood counts. If you have all the info from your hospital, you may be able to complete it all -if you are interested. Not everybody is and the health warning is that prognostic tools are not always very accurate!
Thankyou @ChrissyD . I have used this and hubby was low risk which is so reassuring. Because of his young age and him being so fit and healthy, I’m really hoping this helps and allows us many more years in which time, who knows, the wonderful Dr Wiseman might find new treatment 
. It’s frustrating that at this very early stage nothing can be done and that awful phrase watch and wait is all they can do. It’s like a ticking time bomb! But we try to remain positive and realise we are in a really good position in terms of diagnosis. Thanks for all your wonderful support x
Hi @Logsie I don’t know if this will help, but it does help me, I prefer the term ‘active monitoring’ instead of ‘watch and wait’ and I have been on it with Chronic lymphocytic leukaemia (CLL) for 21 yrs and long may I stay on it.
Really look after and be kind to yourselves
Here here! I totally agree with that @Erica ! It sounds much less doom and gloom!
Hi @ChrissyD Meant to say yesterday.. thanks so much for forward the leukaemia foundation info. Hadn’t read this before. It’s very thorough & comprehensive 
Have a good weekend 
Hi @Sisi . Yes it’s interesting to find new and useful sources of info - it was a new one for me - even after 17 years of swanning around the Interweb (as I call it!). It only came up as I’d put the WHO Chronic myelomonocytic leukaemia (CMML)-0 classification in my search as I wanted to find a source which explained it clearly!
And @Logsie. I know this may not make much sense to you at such an early stage in your husband’s Chronic myelomonocytic leukaemia (CMML) experience but, far from being a scary option, Watch and Wait/Active Monitoring is really a very good place to be. We all tend to think that there is always a treatment/cure for every disease when the reality is very different. Being simply monitored means that somebody is not unwell enough to warrant any treatment , especially when the treatment might do more harm than good, or affect quality of life. Leukaemia Care are soon to publish a new booklet on Active Monitoring and I’ll let you all know when it’s available. I worked on it as a patient reviewer and found it tremendously reassuring. 
It took me a long time, like @Erica, to really appreciate just how lucky I have been NOT to need treatment for so many years.
Hot and sunny here in the SE today so over to the allotment to sow some seeds! Have a good weekend all.
Thankyou @ChrissyD for those reassuring words. You are so right, we are incredibly lucky to be in a position where ‘active monitoring’ is the only course of action as there is nothing there to treat at this stage. Enjoy your gardening in the sunshine, that’s good medicine! X
@ChrissyD Great to hear there’s new information coming out via Leukaemia Care 
@Logsie
Hi logsie great you are posting your experience about your husband’s Chronic myelomonocytic leukaemia (CMML) experience. I have had Chronic myelomonocytic leukaemia (CMML) for 3 years (symptoms started early 22) small pinpricks of blood on lower legs I think they call it fenechet. I was originally diagnosed with a type of skin cancer even though my blood count was all over the place. I was offered a chemo cream which I refused and requested a biopsy. The results were negative. No alternative diagnosis was offered.
Luckily I have a vigilant excellent GP. So a few months later my annual blood test was taken and she rang me to inform me I had been referred to haemotology as the results were very worrying.
After another 3 months of blood tests I eventually had a bone marrow test. Unfortunately they didn’t take out enough material and a disagreement erupted in the clinic. My doctor was overruled and no second biopsy was carried out. Anyway I was left in little doubt that the future was bleak. Recently I have had a problem with night sweats (drenched ) . so I was sent for another bone marrow biopsy and a CT scan. I honestly believed I was starting transformation to Acute myeloid leukaemia (AML). I attended the clinic for my results. Expecting the worse I was actually told my bone marrow results were remarkable! The two samples taken were normal! The CT scan revealed no swollen lymph nodes or spleen BUT blood test was abnormal but better than it had been. My wife asked the consultant if he had my results or someone else’s! I studied the results which were downloaded to my NHS app and sure enough normal seemed to be the popular word. Hillar
nodes were slightly larger but not a worry. Oh how I wish Dr. Dan could study these results and give a opinion. Have I started a remarkable recovery or just a blip that is quite common in blood cancer? I am 74 so to old for stem cell transplant. The brochure I was given said median survival 8 to 24 months, and palliative care when necessary. I have now past the three years since symptoms started. Sorry for going on l have a annoying habit of talking about myself. This forum has been a life saver for myself especially Erica and Chrissy D. Couldn’t find anything about Chronic myelomonocytic leukaemia (CMML) so I posed the question Chronic myelomonocytic leukaemia (CMML) a rare diagnosis and suddenly people with the same problem responded thank the lord I found this forum and the great people who comment.
Wishing you and your husband all the very best
Unclejack.
Hi @Unclejack, so great to hear from you. You’ve had quite a journey! I must admit I have read your previous posts and both my husband and myself really relate to you. You seem to be very similar to my hubby in terms of having no symptoms and eating well (we took your advice about vit D) and keeping fit. To have the doctors say remarkable is totally remarkable! You must have skipped out of that clinic! Long may this continue for you. I have heard Dr Dan Wiseman say on a YouTube video that some patients can reverse Chronic myelomonocytic leukaemia (CMML) so you never know?
May I ask what mutations you have? I worry about this ASXL1 mutation as I keep reading that it’s considered one of the higher risk mutations. We have a telephone consultation in the making with Dr Wiseman so this will be my first question.
Keep doing what you’re doing! And thanks for your post. You are right this forum is so helpful. It’s only been a couple of (long!) months for us since diagnosis and I don’t know how we would have coped without it. Have a lovely evening x
@Logsie
Hi Logsie
Will try and answer your question by studying my results, at the moment I have only seen a copy of a letter to my GP which she downloaded to my GP health record. All that said was I was at high risk of mutations and on very careful watch and wait. Quite frankly that letter to my GP scared me so much I didn’t follow it up. I study everything about Chronic myelomonocytic leukaemia (CMML) especially reputable cancer clinics in the USA.
I think it says everything that Dr. Dan is single handedly is doing so much to make a difference to this almost forgotten type of Leukemia. On my paperwork from the hospital it often says probably Chronic myelomonocytic leukaemia (CMML) which says to me it might not be. You mentioned Vit D. Unbelievably I have been told that nice have instructed G.Ps not to carry out Vit D tests unless they suspect bone disorders. Considering most people in our latitudes do not have enough sun to produce vit D naturally I find that decision dreadful. I admit I hold controversial views but having incurable disease tends to focus the mind. When I was diagnosed and told there was no cure and little treatment I thought just my luck. Now I have seen many articles that say although Leukaemia can be treated with success and many live a good long life at the moment that is probably the best we can hope for. That will do for me if that is my prognosis. So far I have been lucky. My arthritic knees cause me more grief at the moment than anything else.
My platelets have been the main problem they stand at 44 currently. Monocytes are 140 which is slightly high, the rest are only marginally low or high. I am obsessed with this problem and unfortunately it has taken over my every thought. Strangely I don’t get infections, I had a mild cold in January caught it off the missus who was full of it.
Best wishes unclejack.( Thanks for joining the forum we need all the info we can get)
Thanks @Unclejack for your reply. Yes I’ve noticed they really push through the Stem cell transplant’s in America. I’m on a Facebook page called Chronic myelomonocytic leukaemia (CMML) friends which is mainly american. We have a few appointments coming up. Husband had a blood test (first since diagnosis) yesterday so we will get those results and the results of an abdominal scan he had done on 1st May. It’s very nerve racking waiting for this day to come. Hope you all have a lovely Easter. Pouring with rain ALL day here! Over it! X