Hello everyone… my name is Carl im 59 and working in construction management (i dont do physical work) i have been diagnosed with Chronic myelomonocytic leukaemia (CMML)…which despite being monitored by haematology from 2019 until 23 and then being discharged with no treatment to be refferd again in aug 24 with an incidental seperate issue of enalarged spleen to have a BM test and told you have Chronic myelomonocytic leukaemia (CMML) is a massive shock …it is classified as low risk at the moment with no treatment… my mind though is constantly going 100mph … i feel lucky in 1 way but not in others… i guess i am going to have to learn to live with this and take inspiration from the community that i have joined here… wishing you you all the best…
Oh @CarlPeps I am so glad you have joined our community support forum, welcome.
As i read your post I really remember that when I was diagnosed with Chronic lymphocytic leukaemia (CLL), 21 yrs ago, when I was 53yrs old, out of the blue, and my thoughts and emotions immediately went on to high alert.
They were all over the place, random, conflicting, illogical and logical.
I came home and wrote my will and funeral music !!
It sounds as if you will be actively monitored, which is often called watch and wait.
I have always been monitored on a regular basis and now been referred back to my GP surgery to do that and they will fast track me back to the hematologist if need be.
My 70th birthday was my best ever, with a Colin the caterpillar cake.
I like my music and fresh air and I am a nosey walker and Pilates girl.
My diagnosis has given me the opportunity to assess my life and what I want to do with it and with whom. For me the best things are free like family and friends, music etc.
I look forward to hearing more about you and perhaps give yourself time to come to terms with your diagnosis and be very kind to yourself
Thank you very much for your reply Erica… its funny…as all the things you say you did went through my mind as well… …its inspiring to see how you have moved forward since then… thank you Erica …
Hi @CarlPeps and welcome to the forum.
I have lymphoma and have been on active monitoring since 2017.
I struggled to get my head around it first as I just felt so out of control. I wanted something to happen.
I never thought it would get better but it has. I’ve started to look at active monitoring as a treatment, and although it’s always on my mind, it doesn’t overtake my mind as much any more.
The shock is really hard and it will take you time to process things. My emotions were rollercoaster.
This forum was a life saver. You can say how it really is for you and we all understand.
Remember, it’s ok to feel as you are and is completely normal.
Please keep posing 
Hello Nichola and thank you very much for your supportive words… again like Erica… the feelings that you had and the emotions you detail is exactly as i feel… its very hard to actually put into words… but i guess the people in this forum all can relate to each other and their respect issues… i will continue to post…as i feel better reading about yours and Erica’s storys … thank you … and all the best
@CarlPeps Hi. Just wanted to say welcome & to send you my best wishes. As others have said, the forum here is such a wonderful support. Knowing that there are others that we can share our thoughts / feelings / ask advice, has meant a lot to me. I’m supporting my husband ( 73 yrs young ) who was diagnosed with Chronic myelomonocytic leukaemia (CMML) last October/ November. Take care
Sisi… thank you very much for your welcome…seems to me that there are some remarkable people with their own issues still finding the time to support others… thank you and all the best to you and your husband
Hi , welcome to this forum , I’m newish here too , my husband is newly diagnosed with a low grade lymphoma but we are just in process of finding out which one , the waiting is very anxious Tim’s but this forum is really helpful .
Waiting is horrible isn’t it. Have you any idea when you will find out?
Had his ct scan on Saturday so not sure
Just so helpful to know there are others out there going through the same , as sometimes it feels so isolating
Thanks very much Lindy1… i wish you and your husband all the best with the outcome of the results… thank you for your welcome…with everyone elses too its been very touching… thank you
@CarlPeps
Hi Carl
I have Chronic myelomonocytic leukaemia (CMML) symptoms started in January/February 2022. Took quite a while to get a diagnosis. Quite rare. I started a thread called Chronic myelomonocytic leukaemia (CMML) A rare diagnosis. Absolutely shocked with diagnosis. Found the forum and that was a godsend. A lady (Chrissy D) has had Chronic myelomonocytic leukaemia (CMML) for many years and is a mine of information about Chronic myelomonocytic leukaemia (CMML). Dr. Dan Wiseman at the Christy hospital in Manchester is a brilliant physician specialising in Chronic myelomonocytic leukaemia (CMML) and related conditions. His info can be viewed on U.tube.
I have been stable for 3 years. Wouldn’t know I was ill if it wasn’t for the abnormal blood tests.
Best wishes to you unclejack
Hello UncleJack… thank you for your welcome… and thanks for sharing your story with me… i really appreciate you guys taking time out to point me in the right direction for good information that will help me understand the many questions i ask myself when i am alone with my thoughts…and more importantly the feelings you experience and the ways you deal with them… i feel so well i thinking of doing some challenges to help others… thanks unclejack i pop into Chronic myelomonocytic leukaemia (CMML) page for closer look
@Erica
Hi Erica, spoke to haematology on Monday had blood test that afternoon. Got some results yesterday. Disappointedly platelets down to 35,
Neutrophils down to 143, monocytes up to 170 unfortunately nurses computer acting up so other tests not showing yet. They decided to replace my telephone appointment with a face to face appointment. (28th of February)These platelets readings thankfully are not supported by symptoms. Do have blood blisters on a few toes but I have had those occasionally even before diagnosis. I think the tips of my toes tend to face downwards meaning a lot of pressure when walking. As yet no unexplained bleeding, or bruising, penechet hasn’t re appeared.Hard to understand how you can feel so well when clearly that’s not the case. Really stressed about those platelets. I have read pomegranates are supportive of platelets BUT not recommended if you take statins they can interact. Shows you have to be careful with food and medications. I do always check things out.
I think a lot of people don’t realise that fruit and other plants in some cases contain very powerful chemicals that could interact with medication. I will discuss pomegranates with consultant next week see what he thinks.
Anyway fingers less swollen so hopefully settling. As an aside just over three years since first symptoms appeared so I am happy I still feel well.
Hope you are well best wishes unclejack.
Hi @Unclejack as I keep on saying we really are very complex beings.
Glad you are having a face to face appointment on the 28th, perhaps get those questions ready.
I am writing down information for another type of meeting and I keep on having to rewrite it as even I cannot read my scribbles.
You are so right to get the pomegranates checked out.
I reckon that is why grapefruit breakfasts and starters faded out as so many people were on medications that reacted with them.
I was just typing that my pet hate is people saying ‘oh, you do look well’ when I feel lousy inside.
Please do let us know how the appointment goes on the 28th
Best wishes to you too.
I think it’s great you have a face to face appointment to talk through things properly. Keep us updated on how you get on
Hi @CarlPeps
I’m Chrissy - old hand at Chronic myelomonocytic leukaemia (CMML) (thanks @UncleJack for fab intro!) but very lucky that it has been quite a lazy old leukaemia for me! Coming up 17 years on Watch and Wait and no treatment or particular symptoms! Like you I have the large spleen though - quite annoying as it’s usually people with the Chronic myelomonocytic leukaemia (CMML) myeloproliferative type that have this not the Myelodysplastic syndrome (MDS)-type!
If you would like more information on Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)), please take a look at this video by Dr Dan Wiseman from Manchester Christie Hospital who is pretty much the UK expert on Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)). https://www.youtube.com/watch?v=1EpN9TwG-C8
There is also a meeting organised by Leukaemia Care on 27th February with a speaker from Dr Wiseman’s team. Annoyingly, the LC website has been down for the past couple of hours so I cannot get the web link posted here but if you search this Forum there is a thread started by @Sisi re her husband and near the end I have posted the details. Otherwise, when it’s back up, go to the Leukaemia Care website and check out their meetings/ support pages
Also, just to let you know, Leukaemia Care have organised 4 meetings for 2025 for people with Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)). You will find a link to the meetings’ page on LC website. Scroll down to find Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)). Once you register for one meeting you will get registered/notified for the rest of the year. It will be really helpful to meet in a group specifically for people with Chronic myelomonocytic leukaemia (CMML).
All best wishes
Chrissy
Hi ChrissyD
Thank you for your welcome and taking the time to provide me with the information about LC i didnt even know about that… so thanks… i will go to one of those meetings … i will take a look at Mr Wisemans you tube post as well…my better half is a medical secretary with her own little med secretary service… she types for around 10 consultants… do you think anyone of them is hematologist… yes you guessed it… none…lol …so the you tube post will defo help… thank you… at the moment i deliberately staying away from looking into the worst … so may need to look at that once i get my head around the diagnosis… i like some in here am lucky at moment… i feel ok… i have always felt like i am indestructible but now i feel a little less sure of that …lol…anyway… i do have a group of friends here already… and i have only been here a week… so thank you very much ChrissyD… much love to all of you guys… your great people x
Hi @CarlPeps
How great that you have a medical secretary on your “team”! She will certainly help with navigating the NHS labyrinth!!
I hope the video and the meeting will be helpful to you. You should get a balanced view of what your particular disease means for you, and meeting others with Chronic myelomonocytic leukaemia (CMML) certainly stopped me from my usual catastrophising!
Have you yet had Next Generation sequencing on your blood to check what mutations you have -if any? This is very useful information to help your clinicians assess what type of Chronic myelomonocytic leukaemia (CMML) you have -though it sounds as though you have a low-risk disease if you have been categorised as Chronic myelomonocytic leukaemia (CMML)-0?
As time goes on you’ll soon become familiar with all the haematological vocabulary! Meanwhile, I hope you don’t have any bothersome symptoms?
Take care and hope to meet you at the LC meeting. Their website is still down this evening! 
Chrissy