Hi! Finally worked out how to post! Hope this is in the right category. I seem to be working my way through varous chat groups / FB groups. So apologies if anyone reading this has read elsewhere! My husband (73 yrs) was diagnosed with Chronic myelomonocytic leukaemia (CMML) last month. Only through routine blood test. He has no symptoms. Had BMB in August. He has slightly elevated white blood cell & elevated monocytes but all other blood work is within normal range at the moment. Drs were going to Watch & Wait but he has ASXL1 & U2AF1 mutations which makes him higher risk for transforming to Acute myeloid leukaemia (AML). Soā¦.current plan is to have discussion re eligibility for partial bone marrow transplant or to start on Azacitadine. Itās been a bit of a roller coaster few weeks! Thanks for listening xx
Hello @Sisi
Welcome to the Blood Cancer UK Forum.
Itās great that you have posted, and yes, youāre in the right category (but it really doesnāt matter too much, weāre not strict ;))
Sorry to hear about your husbandās recent Chronic myelomonocytic leukaemia (CMML) diagnosis, itās good to know he doesnāt have any symptoms. From what you have written it seems like his haematology team are pro-active in supporting and advising you both, on his diagnosis and treatment options/considerations.
Hopefully you will have some replies from others with Chronic myelomonocytic leukaemia (CMML), there are a few on the Forum, just to let you know how they are getting on and anything they think might be worth discussing or asking the Consultant. You may have already come across this thread: CMML: a rare diagnosis but if not, you might want to post on there too.
Do know that at any point over the coming days, weeks or months you can call the support line if you need us. Itās free and confidential: 0808 2080 888.
Keep us all posted on how things are going for you both.
Take care, Heidi.
Thankyou Heidi for your reply. Itās much appreciated to know there is support out there. Happy wkd to you!
Yes, there is lots of support, different types too; online, face-to-face, peer-to-peer, support groups etc. Different people need different levels and types of support.
I think just knowing that you can reach out when you need to, and not be alone, is important.
No one will judge or question you, if you do ask for support and help - thatās why we all choose to work in this field.
Wishing you a good weekend too.
Thankyou again. Itās a bit like being catapulted into a completely new world! SO encouraging to feel supported & not alone. And now the sun has started shining as Iām typing!
@S120
Hi S120.,
Hope you are well and your husband is alright at this time.
I started my symptoms of Chronic myelomonocytic leukaemia (CMML) around February 2022. Numerous blood tests followed by a bone marrow biopsy highlighted my problem in May 2023. So I have had it probably for three years next February. I feel perfectly well
Except for abnormal blood tests wouldnāt know I was ill. I am on watch and wait. My diagnosis was short and very shocking. I sat in consultant office and was basically told you have Chronic myelomonocytic leukaemia (CMML) leukaemia You are not terminal YET. Then a brochure from Cancer UK was handed over and that was it. I was speechless. No treatment discussed just to say I was to old at 72 for a Stem cell transplant and that was the only curative treatment.
I read the brochure and was staggered to see
medium survival was 8 to 30 months although some live a lot longer or shorter. I only speak to consultant over the phone and havenāt had face to face since since September 2023. I to am vulnerable to high risk mutations.My blood levels are better now than at diagnosis. I have not discussed prognosis ever with consultant seemed pointless in the circumstances. BUT I have studied every reputable medical website possible. Harvard clinic, Mayo clinic, Cleveland Clinic etc. PLATELETS BETWEEN 50 AND 80. NUTROPHILS ALMOST NORMAL, MONOCYTES BETWEEN 129 AND 190. OTHER LEVELS NOT TO BAD. I had one misdiagnosis, they said at first I had skin cancer. This turned out to be caused by thrombocytopenia (low platelets) which left tiny specks of blood. My bone marrow biopsy was botched and there was a battle between two haematologist about doing another biopsy they decided it was not necessary. From what you have said you are having a better experience than I have had. I think they call it a postcode lottery. It is a rare type of Leukaemia and seems research is not a priority. A Doctor Daniel Wiseman based at the Christy hospital posts very interesting u. Tube blogs. I believe he knows more about Chronic myelomonocytic leukaemia (CMML) than most experts. And I hope that your situation stays stable and your possible Stem cell transplant is realised.
Best wishes to you both
Unclejack
PS. I use the NHS app to keep track of test results etc. Found it very useful. And booking GP appointments is easier.
!
Thankyou so much for your message & sharing your journey. I really do appreciate it. And Iām glad to hear that you are not needing treatment at the moment. Although, I guess watch and wait must be difficult to deal with. Thank you for the information re Dr Dan Wiseman. We have watched some of his videos & I was lucky enough to sit in on a zoom meeting that Leukaemia Care had organised a couple of weeks ago which he presented in. Although I canāt remember much about it now! 
Iām hoping it will be uploaded on YouTube at some point. There was some quite encouraging news about new treatments coming through. We are London based & are waiting to hear back from another hospital re possible transplant. Although as my husband is 73 Iām guessing it might not be advised. The consultant said itās not necessarily about how many candles are on the cake! Apparently it needs to be discussed even if itās to rule it out. Iām also hoping that seeing another consultant at another hospital could be fortuitousā¦.another opinion, so to speak. I hope youāre having a nice weekend? Best wishes to you & thanks again x
Hi @Sisi a great big welcome to our forum.
It really does sound as if you have been busy on the chat groups/FB pages and that it has been a bit of a roller coaster few weeks.
You also seem to have had a quick learning curve into medical speak.
Perhaps both of you sit down and write down your fears, questions and practicalities for your husbands next appointment.
You say that your husband has no symptoms so do some lovely things together to divert your minds.
Be ever so kind to yourselves, you might both be dealing to your husbands diagnosis differently, there is no right or wrong, look after yourselves and please do keep posting
Thank you so much for your message, kind words & advice. I really appreciate it. Yes, itās been a crazy few weeks & as you can tell Iām the one that normally does all the researching!!! This forum has been amazing & I have learnt so much about peopleās experiences & how individual Chronic myelomonocytic leukaemia (CMML) is. Although think Iām getting to the point where I canāt research anymore!! Thankyou for suggesting to right down any questions prior to our next appointment, thatās a very good idea. And yes, very fortunate that my husband is feeling ok at the moment. Which sort of makes it even more surreal! Many thanks again & very best wishes to you.
@Erica
Hi Erica dental update.
After many many months I arrived for my appointment. Sat sweating for about 30 mins and then ushered into the extraction room.
There was 4 doctors plus support staff. Wow I thought I must be important. They seemed quite interesting as they studied my haematology record. It was all their, low platelets etc etc.
Then they asked me when I last had a blood test!? I said itās all there on the screen October 15th. Mmm, platelets only last for seven days!
So you need a blood test and treatment within seven days. Yes I know, thatās why you had conversations with haematology I said. Mmmm you need to have a blood test they said. I replied, I thought you were liasing with haematology to tie in the extraction with my platelet level. I pointed out I had access to the communications between yourselves and haematology. Obviously my records had not been read until I sat in the dentist chair. They decided to give me a blood test and re. schedule the extraction for next week if platelets were above fifty if below a transfusion would be necessary. I left the dept with steam coming out of my ears. Then as I walked to the bustop my phone rang to inform me I would need a mouthwash with a clotting ingredient and some pills with the same clotting ingredient. No debate no explanation no informed consent. I had a minor stroke 4 years ago and donāt like the Idea of a medication which could cause embolisms etc as a side effect. So it seems even a simple procedure is fraught with problems. I had said more than once that a blood test was needed to tie in with the extraction. I must say when my Chronic myelomonocytic leukaemia (CMML) decides itās Acute myeloid leukaemia (AML) time I stand little chance if this latest episode is anything to go by. Completely gutted by the sad experience.
All the best from a very disappointed and still fuming Unclejack.
Oh @Unclejack I am not surprised you are fuming and very disappointed, I am feeling gutted for you.
Thanks so much for letting us know
After all those months of waiting and then sitting in that waiting room for 30 mins sweating, what an emotional rollercoaster you have been on.
I am sounding like Victor Meldrew here āI donāt believe itā.
Oh @Unclejack I am so sorry, please do keep posting and the Blood Cancer UK support line is there for you on 0808 2080 888.
@Erica
Thanks Erica I was very wound up. Never mind we have just started putting up the Xmas decorations. Feel a bit embarrassed now, there are people on this forum having a far worse time than me. All the best to you
Unclejack.
Oh @Unclejack the situations might be very different, but I think many of us share similar thoughts and feelings.
I have got our decorations up as a friend came to see us, who lives in Australia, at the weekend.
Every year I say I will put less up, but it still looks like Santaās Grotto.
Hi all and especially @Sisi. So sorry to hear about your husbandās diagnosis. I well remember the shock and anxiety when being told about this rare disease diagnosis which kicked off nearly 16.5 years ago! Iāve been on watch and wait and actually very glad of that as Iām not a fan of treatments that give side effects!
Iāve been long term involved with Myelodysplastic syndrome (MDS) UK as Chronic myelomonocytic leukaemia (CMML) was once a sub-type of Myelodysplastic Syndromes but in 2016 the WHO gave it its own special status as an Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) crossover disease.
If you are planning to get an additional opinion, Iād heartily recommend that you get yourself referred to Dr Dan Wiseman at the Christie in Manchester as heās pretty much acknowledged to be the most experienced clinician in the U.K. for Chronic myelomonocytic leukaemia (CMML). Heās done some research studies/trials recently too. Youāll have seen him at the LeukaemiaCare meeting ( I was there too!) and he really is up to date on the latest trials and treatments. But what i like about him is that he is very honest about the likelihood of certain treatments like Azacitidine working for Chronic myelomonocytic leukaemia (CMML) patients and very conservative on issues like stem cell transplant. You mentioned discussing a partial stem cell transplant. I have never heard of this and not sure what was meant by it so maybe thatās a question for you to ask. Itās a very toxic and risky process with uncertain outcomes so be sure to get all your questions answered about that as, if your husband currently has no symptoms, he might do better and have a better quality of life by not having a transplant!
Have a look on the Myelodysplastic syndrome (MDS) UK website for 2 videos in stem cell transplant. One by Dr Victoria Potter from Kings and one by Beth Payne from UCLH. Both very informative and realistic about outcomes.
Leukaemia Care also offer a buddying service (Iāve just become one!) whereby you can be matched up with somebody who has the disease themselves.
I hope you both gradually begin to come to terms with your husbands diagnosis. Itās early days and youāre both probably in quite a shocked and anxious state. It gets better. I donāt really have any symptoms either and if it werenāt t for the blood test results and bone marrow biopsy, I wouldnāt have known -except I was one of the rare people for whom the Chronic myelomonocytic leukaemia (CMML) kicked off in a very alarming way with a heap of scary symptoms -including both lungs and tummy full of fluid, liver and spleen enlargement, weight loss and nausea, plus pain and insomnia. Fortunately that has not returned after first few months when the hospital was trying (and failing!) to make a diagnosis! That happened a year later when Iād gone back to the GP saying my spleen still felt enlarged and off we went again with haematology who got it right second time around!! 
Stay in touch as you may get others posting. Xx
@Erica
Hi Erica just had a call from the hospital! The blood test taken on Monday was not sufficient, so has to be repeated tomorrow. Seems like post code lottery is very applicable to my local hospital. Similar situation to my bone marrow biopsy which was insufficient a while ago.
Thank god I still feel very well and am still on watch and wait. I hate to think what could happen if I need treatment. All these problems for one loose and broken tooth! As they say broken Britain.
Best wishes unclejack.
P.S. they want to prescribe a medication called tranexamic acid to help control bleeding. Looked it up on Google apparently the dose is eight tablets a day! I hope someone else on the forum has experience of this. With my blood levels stable I hate to think I could be taking anything that could rock the boat.
@ChrissyD Thanks so much for your message & all the information. I have watched a few of the Leukaemia care / Myelodysplastic syndrome (MDS) videos & now feel like I know you! Massive thanks for such a detailed response. I hadnāt realised you have been dealing with Chronic myelomonocytic leukaemia (CMML) for so long! You mustāve become very knowledgeable by now! Yes, weāre waiting for appt to come through at St Georgeās Hospital London ( we are based at Kingston Hospital where they donāt do transplants ) to discuss the possible eligibility re transplant. Iām not sure what a partial one is either, so that will be first on my list to ask! One of the Drs we saw last week at Kingston, also works at Kings, which gave us some comfort. Another opinion so to speak. He did seem that it was unlikely that my husband would go down the transplant route but apparently itās something that they want discuss. Altho he has no symptoms he has high risk mutations, so I guess thatās why they are not just watch and waiting? I will definitely keep in mind the possibility of second opinion with Dr Wiseman, thank you. What an amazing man he is! And yes he does seem to be conservative regarding the transplants, which is not suprising, considering the risks. The zoom meeting last month was very informative. I have learnt a lot. Altho canāt remember most of it now! Thanks again. It means a lot. I will keep you posted once weāve had our next appt. Best wishes to you xx
@Unclejack Good luck with your dental appointment! Dentists are certainly not my favourite people! Iām a child of the ā70ās when they used to fill teeth or remove them at any opportunity 
Hi @Sisi . Glad if itās helped you in any way. 
It takes ages to get your head around these rare diseases -not helped by the fact that both Chronic myelomonocytic leukaemia (CMML) and Myelodysplastic syndrome (MDS) are so variable in symptoms, outcomes and prognoses that they might as well be different diseases! No 2 people are alike!
I forgot to say that if you do decide to get another opinion from Dan Wiseman, you can probably get a video appointment so wonāt have to drive to Manchester! I think others on this forum may have done that?
Rest assured that experienced stem cell transplant clinicians will help you weigh up risks and benefits of a transplant and wonāt go ahead unless the balance is favourable. Plus taking into account your husbandās own wishes of course.
Hope you soon get some useful consultations. Let us all know how it goes. Thinking of you. Take care of yourself. Itās sometimes a heavy burden for women (quite often the case -sorry gents!!) to be doing all the emotional, admin and research āheavy-liftingā on behalf of their husband who often doesnāt want to go into it too deeply! 
@Unclejack on here being the exception!).We are all different I guess. 
Hi @Unclejack . Obviously you have to go with what is suggested by your clinicians. All I can say is I have platelets at a similar level to yours-between 55-70. I have had 2 back molars extracted at the dentistās- due to the wobbly teeth caused by loose gums due to the Chronic myelomonocytic leukaemia (CMML)! I checked with my consultant at Addenbrookes who said at that level of platelets, nothing would be needed in advance to prevent risk of bleeding. He said (as I have neuts around 0.7) that I might consider taking antibiotics in advance to prevent any infection but, given they always give me terrible diarrhoea and upset my gut (sorry!), I said Iād wait and see and take only if there were signs of infection. In neither case was there any problem with bleeding or infection. I just did the warm saltwater mouth rinses when advised to once it had clotted.
Itās worrying when there isnāt a consistent message. It really sticks in my mind though that my consultant at Bartās, when I questioned him about surgery with low platelets replied airily āOh you can have a replacement hip operation done with a platelet count of 80ā ! So with that yardstick in mind, I felt a lot more confident about having a tooth out!! Hope you soon get it sorted!
@ChrissyD Thank you 
And for your comments re stem cell transplant. And yes re the āheavy liftingāā¦think @Erica had quickly worked out that Iām normally the one that does all the admin / research stuff! 
Good to know the possibility of Dan Wiseman & video appts. Weirdly our son is based in Manchester, so we often visit. Will keep you posted. Best wishes xx