CMML - A rare diagnosis

Dear Robyn,
My dad was treated with Azacitidine. He had four cycles. Normally you get injections in your belly 7 days in a row. Then a break of 3 weeks. Your belly really hurts after a while so I recommend to get some good oil, a doctor recommended evening primrose oil (that’s how Google translates, hope that is correct :slight_smile: ). I would start using it from the beginning on your skin even if you dont feel too much pain at the beginning, maybe you can avoid it!

Another side effect was in my dad’s case that platelets were really, really low… so it was never sure if they could continue Azacitidine or not.
Once he had some water in his lungs and had to be hospitalized - I do not know if that was a side effect but keep it in mind because dad could hardly breathe and was in a very bad condition and the doctors always said you need another blood transfusion it is from low count of red blood cells… but it was from water in the lungs! I wish we knew earlier.

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Before you get the injection with Azacitidine they will give you a pill so you won’t feel sick. This really worked well for my dad, he never felt sick and was always eating/drinking normally afterwards. He always said to me the only side effect he is noticing is the belly pain.

You mentioned that you need blood transfusions, do they also give you Epo once a week? If not, pls discuss it with your doctors! This helps the body to produce red blood cells, it is an injection once a week. One specialist told us that my dad started getting it too late… he needed blood transfusions weekly and this could be avoided if Epo works well.
Apparently it takes a while until it has an effect on your red blood cells so better start early😉

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Make sure to drink lots of water (always, but especially during AZA cycles!!). Important for your body.
And try to accept the treatment as a great chance for your body💜I believe the attitude is very important.

I have contacted many specialists in German speaking countries bec of my dad and they all shared the same opinion: Azacitidine is the best they have since many years for Chronic myelomonocytic leukaemia (CMML). Try to always keep that in mind. And be patient with yourself - normally it needs at least 3 to 5 cycles until your blood results are improving. Do not get discouraged!

I have read several studies about this treatment and if it works well you really have much better quality of life.

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Hi Jack,

Considering it’s called the NATIONAL health service they have so many different levels and procedures. As far as my hospital is concerned 0.8 is normal monocytes, mine have been up to 4.0.

Now they’re not mentioning the monocytes but concentrating on all other aspects of my haematology.

Yesterday I had to attend A&E as my temperature was high, loads more blood tests and chest X-ray and was sent home with antibiotics. Minor infection.

The blood transfusion definitely had a positive effect, platelets up from 15 to 50, didn’t manage to spy the other results. And I am feeling noticeably better.

Having to stay home is giving me time to research more. Always new advances being made.

Stay well
Best wishes


Very sorry to hear you are having a tough time.
My platelets are 50 having dropped from 80. Monocytes dropped from 190 to 170. Neutrophils have been stable since before last Christmas and now not classed as having
neutropenia . I still carry my emergency card just in case. The full results have not been uploaded on to my GP website yet. I am still concerned about my continued use of 40 mg Atorvastin as my cholesterol level is very low at 2. I wonder why it’s not a concern, perhaps others have a similar reading? A neighbour of ours suffered from lymphoma for many years. He took Ill and was admitted to hospital. The doctors said he had pancreatic cancer and was terminal. He sold his caravan and prepared his wife and family for the worst! Luckily a consultant from the Royal Marsden hospital happened to be at the hospital and checked all the tests and announced he did not have pancreatic cancer but a recurrence of his lymphoma. Back on chemo and he lived untill he was 86. He had lymphoma for over 30 years. Never cured but well controlled by chemo throughout that period. Seems mistakes are not uncommon and the NHS is not always right. Postcode lottery! My bone marrow test was not completed fully they didn’t remove enough material. Then one doctor said it needed to be repeated but the consultant overuled him. My haematology clinic is chaotic and unfortunately English is the second language which makes communication difficult. Anyway hope you are on the mend,get well soon.
Best wishes unclejack.

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Hi Jack,

If you don’t mind me asking, where in the UK are you? I’m in Dorset.

It’s mind boggling how a postcode can determine the treatment you get.

I’m having to shield at the moment due to the infection and antibiotics. I’m praying I can still have the transfusion on Thursday. But can be lonely.

Do I remember correctly and you have a partner?

Keep well
Best wishes

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Hi, East Midlands, yes luckily my wife is fit and well. Wish our medical services were! Very little empathy, ambulance service a joke, GP service very hit and miss. Quite frankly we resemble a third world country. I had a bleed no ambulance available luckily taxi driver was great and took us both to A and E even though I was bloody. Followed by a 10 hour wait to see a doctor. At the time I was both neutropenic and thrombocytopenia with a emergency card, didn’t seem to speed things along. Best wishes for Thursday

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Hello All.
@Unclejack @Robyn @maggiemoon @Lyndam and all diagnosed with Chronic myelomonocytic leukaemia (CMML).
I am setting up a support group meeting for people with Chronic myelomonocytic leukaemia (CMML). It is on 24th April 11-1 online via Zoom. It is being hosted by me for Myelodysplastic syndrome (MDS) UK to try to set up a mutual support group for Chronic myelomonocytic leukaemia (CMML). Also being supported by Leukaemia Care. Alice of BCUK has said I can advertise it here.

If you wish to attend you will need to register for free membership with Myelodysplastic syndrome (MDS) UK and then register for the meeting.

Join here:

Register here:

Look forward to seeing some of you.


@Erica @ChrissyD @Silke @Robyn @Jilly20
Hi all.
Just been browsing through a conversation between my GP and consultant concerning continued statin use. Seems my own research about thrombocytopenia was correct. Statins can cause thrombocytopenia. My GP suggested a trial to see if curtailing use or reducing dose would be useful. Haematologist said no. My cholesterol level is 2 so I am still confused about why I need statins at all. I intend doing more research then asking for a explanation.
Certainly pays to question everything these days
in our failing country.
Best wishes

@Erica @ChrissyD @Robyn @TanyaBloodCancerUK
Hi folks
A question that has crossed my mind about Chronic myelomonocytic leukaemia (CMML) diagnosis and possibly other blood cancers is this. How many people are walking around with blood cancer particularly young people who have no Idea they have the disease.
Seems to me the young rarely have blood tests until symptoms of something wrong arise. My own diagnosis arose after what appeared to be a odd almost invisible skin rash that appeared on my lower legs. I was referred to dermatology who misdiagnosed it has a skin cancer and even though the biopsy I demanded proved it was capillaries leaking into skin i was not referred anywhere for further investigation just discharged by dermatology. It was only when a few months later when I had my routine annual blood test that that my GP raised the alarm.
Even so my consultant said this was not blood cancer. Then many months later the bombshell diagnosis was made. I googled blood cancer and was surprised to find out that those specks of blood was a COMMON symptom of a number of blood cancers. I then realised this could have been picked up possibly a long time before it was. Seems simple logic to me that if a original diagnosis is proved to be wrong that further investigation should be carried out. Admittedly for myself even if the correct diagnosis had been made from the outset it would just put me on watch and wait a year or so earlier. So on that basis I have possibly had Chronic myelomonocytic leukaemia (CMML) for perhaps 2 to 3 years. My routine blood tests up to 2022 which I have viewed on the NHS app GP records never mentioned full blood count. From 2022 onwards full blood count has always been detailed. Does that mean full blood count is only carried out if requested?
I would have thought a full blood count would have been the most important part of a blood test? Perhaps it would be impractical and to expensive to test young people regularly as routine. BUT I have noticed during my continual trawl of various websites that globally cancer cases particularly among the young are rising inexorably. Seems nobody is questioning this development and those that do including world renowned experts soon receive threats against their careers. Why?
Best wishes to all


A very good question @Unclejack
Perhaps it would be upsetting the NHS financial and apple cart.
Perhaps a lot of conditions could be debating the same issues.
Also why cause people emotional anxiety until they have symptoms
Your point about GP’s carrying out a full blood count at an earlier stage is a good one.
Perhaps more time could be allocated to Blood Cancers during their already packed medical training.
I could go on and on with this.
I will copy this to Blood Cancer UK @BloodCancerUK
Thanks for this

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Uncannily, was reading this and saw your comment about younger people being diagnosed more often, so this may be of interest: Why are young people like Kate Middleton getting cancer? The search for answers - Vox

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Totally agree about it probably not being financially sound for the NHS to do so many blood tests so frequently every year just in case, especially considering how rare our blood cancers are relative to the populations of where we live. But seeing as pretty simple blood tests can indicate untoward health concerns you’d think they’d be the first port of call for checking for so many ailments.

Was just thinking that if we could normalise these tests to help minimise anxiety about potential test results, like with those simple colon cancer tests that folks older than 45 can do pretty easily, then maybe we can catch more blood cancers sooner and while younger. My Polycythaemia vera (PV) was found due to a simple blood test. I’d much rather find out via blood test than the horrible emergencies so many experience that take them to hospital first.

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4 posts were merged into an existing topic: Covid vaccine booster worries

Hi @ChrissyD
I am not able to join the zoom meet on the 24th but would like to take part in future meet’s. The problem is I have never used zoom and have no idea how to join this. Could you advise me how to do this. Hope you are keeping well


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Hi @Lyndam it is good to hear from you again.
I will copy your post to Blood Cancer UK @BloodCancerUK-SupportTeam to see if they can assist with your question.
Look after yourself

Hi @Erica
Thanks for this.

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Great to hear from you, how are you?
Best wishes unclejack.

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