I wondered if anyone’s aware of any meaningful research in to CHRONIC MYELAMONOCYTIC LEUKAEMIA - or is active in collecting evidence/symptoms etc from fellow-diagnosed folk like me.
Diagnosed 2019 - likely 5 year life-span.
Just to start things off:- two significant factors in my case
- My Monocytes readings - the evil one to watch - hasn’t changed much.
- Anaemia is my problem. Frequent transfusions are so far the answer.
To lessen frequency of transfusions I was given a 4-weekly course of RITUXIMAB. It ain’t worked!
Symptoms prevailing change like the wind - and attack and disappear suddenly and at random.
Known ones are bruises - with no cause
Nose-bleeds and inevitable slow-to heal cuts ( via essential blood thinners
Fragile thin skin - with the appearance such as my 102-yr old late Mother-in -Law’s- (I’m 72) due to (albeit low dose know) steroids.
Won’t list the lot but would be interested to compare notes as well as participate in any research
I have kept a diary-blog since day 1!
A dystopian book in the making!!
Hi @Pragmatic, I hope someone will be able to help you with their experiences.
A really good idea to keep a diary blog
I haven’t, but looking back on what I have written about my symptoms and feelings around medical appointments is very telling.
I am sure your War and Peace sequel will be more read than the original.
Look after yourself.
Hi @Pragmatic - I had undiagnosed CMML for several years. My primary symptoms were continuous low grade anaemia and increasing thrombocytopenia. When the monocytes increased rather rapidly I was given a BM aspiration and biopsy at my local NHS hospital. I had just tripped into CMML2. That was December last year.
Before that the blood issues were perceived to be autoimmune related. My autoimmune markers showed undifferentiated autoimmune disease, part sjorgren’s, part lupus part unknown.
Since diagnosis I was put on 4 cycles of Azacitidine- and managed to get admitted to local hospital for high temperatures/unspecified infectio /sepsis. The chemo drug was to reduce the level of blasts in the bone marrow, and to reduce lymphocytes and monocytes.
At the same time referred to Addenbrookes (a centre of excellence for Stem cell/bone marrow transplants) where they agreed a stem cell transplant was the best option. The Azacitidine whilst being palliative also prepped my body for the Stem cell transplant.
The research team at Addenbrookes are outstanding. As much as you want to understand they will explain - I’m a researcher (not medical until now!) so they kindly answered many v technical questions that I asked so I could understand.
I’ve lost count of the transfusions I’ve had, both red blood and platelets. The platelets had to be HLA tissue matched as my autoimmune condition produced antibodies to non matched platelets which then destroyed both the donated platelets and my own few.
I don’t know how much more detail you want @Pragmatic but I’m happy to share!
Ps had stem cell transplant from brother - a full match - 61 days ago
Hi @ChrisCKW how was/is your brother as a matter of interest?
@ Erika - he had to take the blood stimulating stomach injections (3a day for a week), but produced the stem cells and bounced back within a few days after donating.
@ChrisCKW Thanks we often forget about the brilliant donors. Look after yourself.
I was daignosed with CMML in 2017 and cannot see that there has been much direct research into the disease. I was on W & W for 12 months and then started on Hydroxycarbamide that kept things stable until early this year.
I then started Azacitidine injections and after 6 cycles and numerous blood transfusions my blood counts have been pretty good for the past couple of months - until I had an infection and had to miss a cycle. (took that opportunity to have an angioplasty and couple of stents inserted).
That has slightly affected blood counts but I have just commenced a new cycle of Aza.
Too old at 79 for a stem cell transplant so will have to battle on.
Good luck to you, its hard to come to terms with this disease.
Good to hear from you @mrew.
Gosh you have had a lot going on especially this year.
Take lots of care of yourself and keep posting how you are doing.
So pleased re stem cell transplant for you
We oldies are disqualified
My son’s been on a bone marrow donation list - for years - ironically well before my terminal diagnosis- AND he’s donating soon. A global -found match.
Feeling proud - so’s he! -and it’s for a young girl.
Oh the plusses and the minusses, eh?
Thanks to all for your responses
Changing subject -Anyone out there or anyone you know with (serious) AFIB - very common- like me. Watch this!
Hi @Pragmatic Please thank your son, so, so much for donating his bone marrow globally, he will probably change a young girl’s life. Look after yourselves
You must be so proud of him @Pragmatic
Hello! I just wanted to put some info on this thread about CMML research that’s been going on in response to a couple of the questions.
Myelodysplastic syndrome (MDS) Patient Support has a list of trials, some of which are no longer recruiting but which included or focused on CMML in the eligibility criteria, which you can find on this page https://mdspatientsupport.org.uk/latest-news/closed-mds-trials/ and some which are still recruiting eligible participants, which you can read more about here https://mdspatientsupport.org.uk/what-is-mds/current-trials/. (If you’re looking at clinical trials in the context of your own individual circumstances, don’t be afraid to talk your questions through with your clinical team. You can also contact our Clinical Trials Team here at Blood Cancer UK if you want to talk things through - Clinical Trials | Blood Cancer UK).
You may also know of the EUMDS registry - https://eumds.org/ which is collecting data from patients in participating hospitals , on the disease, treatments and effects of treatment of patients with myelodysplastic syndromes (Myelodysplastic syndrome (MDS)), and includes people newly diagnosed with CMML in its eligibility criteria.
If you’re looking to contribute to research, you might be interested in signing up to this website incase anything comes up you might be eligible for - Be Part of Research (nihr.ac.uk).
I too have just found out I have CMML. Not sure what to expect, wouldn’t have know I have it, numerous scans whilst undergoing bladder cancer treatment indicated my spleen was enlarging !
What is the age cap for the stem cell transplants ? Not sure if my 66 years puts me over the top.
Not even sure yet, what category or how many percent of the blast thingies.
Guess I will just have to hope for the best.
Good luck with the continuing treatment
Hi @Peteed00 you must be in complete shock, reading you post I can sort of feel the panic in it.
Firstly, perhaps just concentrate on your bladder cancer treatment, that is enough for anyone to contend with.
What is the next stage with your CMML?
I presume it might be an appointment with your GP or a consultant.
The questions you ask on here are best asked of them.
Now is your opportunity to write a list of all your questions for them plus your fears, medical history, medications, allergies, family history, practicalities etc.
You might just go onto a system called ‘active monitoring’ or ‘watch and wait’ which is when you are tested or monitored every so many weeks or months to see how your CMML is acting.
Do you have support from family and friends?
You are part of our forum family and the Blood Cancer UK support line is only a call away.
The main thing is that you really look after yourself and keep posting.
Hi Erica. Thanks for your response, I am not due to see my haematologist til mid July and he has suggested a referral to a Mr Wiseman . CMML specialist at Christie’s.
At this stage I am unsure of how advanced the CMML is.
To add to the mix, a recent PET has indicated probable Prostrate cancer too ! I’ve got a biopsy booked for Wednesday.
I was just trying to get a feel for what other CMML people have experienced
Take lots of care of yourself, you are going through a lot emotionally, physically, medically and practically.
Please use this forum to say how it really is for you. and how your biopsy goes on Wednesday.
Hi Pete. CMML is very variable and it is possible that you will be monitored (watch & wait) and for some this can go on for many years, I was diagnosed 5 years ago and was on watch & wait but after 12 months had to start taking hydroxycarbamide as a tablet. Unfortunately my CMML spread and caused kidney failure and last year had to have a number of blood transusions and started on monthly Azacitidine injections. These have improved kidney function and stabalised blood counts and are likely to continue for as long as they continue to work. I am 79 and too old for transplant although the decision is based more on health than age alone.
It is hard to come to terms with a cancer diagnosis. I wish you well in what will be a long journey.
I don’t even know at this stage what degree of CMML I have, in fact I wouldn’t have even known I had it, other than my spleen was seen to be enlarging every time I had a Ct scan for my bladder cancer.
My Haematologist hasn’t much experience of CMML and I am waiting for a referral to a specialist at Christie’s I heard from a lady on here and she was saying that .Azacitidine injections made her very poorly, have you not been too bothered by them ?
Your words to offer me some comfort. Hopefully I am at an early stage.
Thanks for getting back to me.
Good luck with your continuing treatments
I have not really had many symptoms. I also have a very enlarged spleen but again few symptoms from this. As I said there are many fellow CMML who have never required any treatment, but watch and wait can be stressful - you have blood tests every few months and naturally get anxious waiting for results. I should not get too worried about Azacitidine. You may never need this. I am in Sheffield and the haematologists here say they know how to treat CMML. I have to take them on trust, but I know that Dan Wiseman is a recognised expert so you will be in good hands and the fact that you are not due to see him until July indicates that matters are not urgent.
The worst aspect is the stress of having cancer of any sort. but at least we do not have to worry about having to pay for treatment.
I shall be interested to know how you go on and likewise wish you the best of luck.