Diagnosis of CMML - any experiences?

[HoratioVelveteen]

My Ddad 78 has been diagnosed with a type of leukemia CMML.
He'd been anaemic for some time and had recurring bouts of cellulitis which antibiotics were slow to clear. He had blood tests and eventually a bone marrow biopsy from which he has been given the CMML diagnosis. He's since had 2 blood transfusions.

His main symptoms are extreme fatigue, weightloss, loss of balance when walking.

Does anyone else have any experience of this? I've done a lot of googling and a lot of the info is very technical and my dad is very private and won't discuss much about what the doctors have told him.

I don't have personal experience, but can give a brief summary in basic terms, if that helps?

Basically, your bone marrow is where all your blood cells are made. Monocytes are a type of white blood cell that helps to fight infection. When someone has CMML, they produce too many monocytes, and the ones they produce are often rubbish. But they're relatively big, so as the disease progresses, the bone marrow gets filled up with rubbishy, ineffective monocytes and doesn't have room to produce the other types of blood cells that it needs.

The abnormal cells are known as blasts, and the level of blasts a person have decides their stage (0-2). Treatment depends on the stage of CMML and other features of it.

Some people (about 15-30%) have their CMML transform to AML, which is more aggressive.

www.cancerresearchuk.org/about-cancer/other-conditions/chronic-myelomonocytic-leukaemia-cmml you might have seen this, but it's helpful.

Thank you for such a quick response.

I don't know what stage he is but he said he's too old to have the stem cell transplant and doesn't seem to think he'll have chemotherapy.

Do you think this means he'll have supportive therapy in the form of repeated transfusions? The two transfusions he's had so far didn't make him feel any better (he said). Can a patient continue to have transfusions for a long period of time?

Apologies if I'm asking questions that are impossible to answer. I'm going to try and persuade him to let me come to the next appointment

I think it would be great if you could go along to the appointment. Treatment is very individualised and it will all depend what blood tests show.

He may be able to have some low dose chemo. This is given to people your Dad’s age, who are generally too old or unfit for inpatient chemo. It’s usually given as an out patient, with the focus being maintaining quality of life. The remission rates for this are not as high as for intensive chemo however (20-25%).
Re blood transfusions, it may be that his HB still hadn’t increased enough to make a significant difference. We give them for as long as patients want to receive them (If we can medically.) Patients at the very end of life usually decide to stop transfusions as they have to come and sit for a whole day which in itself is tiring. There gets to a point where they don’t get the uplift after a transfusion, and that’s when they decide to stop.

I don’t have experience of CMML but my husband has had CML for over three years. Macmillan and Leukaemia Care both have excellent resources which can help explain the illness and different treatments. I recommend contacting the charity Maggies. Our local centre was able to explain all the different treatments, how the illness would impact our lives and provided both me and my husband with individual counselling to help us come to terms with his diagnosis.

Thank you for your responses. I need to find out more info about his levels of blasts and about the low dose chemo.
I'll investigate the support you've suggested. He's very depressed as you might expect and tends to withdraw into himself

Those support resources listed above are excellent. Leukaemia Care in particular do really easy to understand patient information sheets about haematological illnesses and Macmillan’s drug info is excellent. He may be offered Hydroxycarbamide. It’s a chemotherapy tablet which lowers the white blood cells which can be too high in CMML. It doesn’t treat the underlying disease but can stop the white blood cell count from climbing (which makes the blood too thick.) It’s very well tolerated usually.

Just to echo Spudina and PPs.

There's an interim arrangement in place within NHS England/Wales for venetoclax with a hypomethylating agent or low dose cytarabine for untreated acute myeloid leukaemia when intensive chemotherapy is unsuitable - it might be worth checking if there's anything comparable for CMML and the charities are the ones who would know.

Thank you very much. I've now seen the letter from the haematology clinic to my dad's GP which confirms he has CMML subtype II.

There is also this list of numbers:
Hb 86, MCV 114.2, WCC 7.3, platelets 69
but no further explanation. Would anyone be able to tell me what these numbers are?

My Dad doesn't think I'll be allowed in to his next appt (I'd forgotten about covid rules) but I guess it would be ok if I wrote down a question about the low dose chemo for him to ask.

@HoratioVelveteen

Thank you very much. I've now seen the letter from the haematology clinic to my dad's GP which confirms he has CMML subtype II.

There is also this list of numbers:
Hb 86, MCV 114.2, WCC 7.3, platelets 69
but no further explanation. Would anyone be able to tell me what these numbers are?

My Dad doesn't think I'll be allowed in to his next appt (I'd forgotten about covid rules) but I guess it would be ok if I wrote down a question about the low dose chemo for him to ask.

You can look up what those blood tests represent and what's been measured:

labtestsonline.org.uk/

However, you're best off chatting to the helpline of one of the relevant charities as a number of them are nurse-led and then can talk you through them.

www.leukaemiacare.org.uk/about-us/contact-us/

www.cancerresearchuk.org/about-cancer/other-conditions/chronic-myelomonocytic-leukaemia-cmml/what-is-cmml

I would ask about attending the appointment as some consultants and hospitals are flexible. Failing that, I wonder if your father has a Clinical Nurse Specialist who might be willing to have a phone call with your with your father's consent?

Hb = haemoglobin. That's a protein in the red blood cells that carries the oxygen around the body.
MCV = Mean Corpuscular Volume. It's the average size of the red blood cells.
WCC = White blood cell count. That's the blood cells that fight infection.
Platelets = Let the blood clot if there is a wound.

For the levels, you really need to know the lab reference range. Also, some values can be high/low but have no clinical significance, and other values can be only a little high/low but be very significant.

Generally, the doctors will assess the blood counts and make treatment decisions from them.

Hello, I'm posting again to update in case anyone else finds this thread useful. I'd never heard of CMML a few weeks ago and I've learn't so much.

So, I did go with my Dad to his appointment with the Consultant this week. He is going to start on Azacitidine with the aim of reducing the levels of white blood cells which in his case are causing the problems in his bone marrow. If they can improve his quality of life and extend his life expectancy a bit then that would be a positive result.

The consultant was very clear that
a) the Azacitidine may not work at all for him
b) his blood counts may get worse at first and he may still need blood transfusions as well
c) it will be onerous for him having to go to the hospital for 5 days one week and 2 days the next before a break of 21 days then starting again and that this is for the rest of his life if it works
d) a very big risk is that he'll get an illness or infection which his body simply won't be equipped to recover from

I've come to accept that his prognosis is poor given his age and his specific diagnosis. I think he came away feeling a bit more positive that at least this was something worth trying. He can be very stubborn too so he'll not give in easily!

Anyway that's where we are now. I'll update once he starts treatment.

I'm glad you have a clear picture, but sorry it isn't more positive

Final post
The azacitidine treatment didn't make any difference to his blood counts and in Sept 2022 his consultant told us that he had progressed to AML. He continued to have blood transfusions once a week which kept him going but with a very poor quality of life. He got weaker and struggled with walking and doing anything other than sitting at home reading the paper.
He died on Monday 19th Dec at home.

@HoratioVelveteen, I'm so sorry you lost your Dad.
Sending you as unmumsnetty hugs as you need.

So sorry to read that

Hi OP,

So sorry for your loss.

My dad was diagnosed with MDS 10 yrs back, at the age of 62. CMML is a type of MDS as they are bone marrow related.
Like your dad he didn't share much with me at the time. I only knew the seriousness of it and its progress 2 yrs back.

My dad had a good lifestyle with healthy eating habits/diet, exercise etc. The MDS was picked up in a routine blood test and at the time he was given 5 yrs max by the doctors. This too he didn't share with me.. only my mum knew.
His health was monitored and had blood transfusions in the past few years but apart from that he tried to be active and enjoyed his retirement by doing things he loved.

He sadly passed away last month at the age of 72... he lived 5 more years than he was given initially.
He picked up a stomach infection which led to sepsis and then multi organ failure. The MDS was the underlying cause as his immunity was so low and blood work was all abnormal.
The disease catches up, no matter what.

I wish you well OP and I hope you remember your dad fondly and with a smile on your face. Remember him when he was in good health and all the lovely memories he left with you. Thinking of you.

My husband has cmml, he was diagnosed 2 years ago.
He's 76
We are on watch and wait, blood tests every 3 months.
It's been hard, his anxiety is through the roof because we just don't know what to expect due to it being so rare
He's exhausted, but still solders on, cooking, shopping.

Sorry for your loss OP. I realise time has moved on but wanted to add for future reference for anyone looking for CMML that there is an excellent support group MDS Patient Support Group based at Kings in London (but is for anyone) who are amazingly helpful with MDS meetings across the UK.

they also have a Facebook group MDS UK Community.

If you find written that CMML is not considered an MDS disease still go to this area of support for information as it is covered by MDS support.