18 months ago, I was diagnosed with Chronic lymphocytic leukaemia (CLL) and am on watch and wait, no treatment. Yet my consultants’ diagnostic reports formally say I have Chronic lymphocytic leukaemia (CLL) and “probably” Chronic myelomonocytic leukaemia (CMML). Yet Chronic myelomonocytic leukaemia (CMML) has never been spoken about during consultations. However, a quick internet search suggests that Chronic myelomonocytic leukaemia (CMML) is much more serious than Chronic lymphocytic leukaemia (CLL). My question therefore is: is it reasonable after 18 months of regular blood tests and consultations for the word “probably “ still to be used to describe my condition? Is it so difficult to make a definitive diagnosis? How would that be done?
It doesn’t feel right to me. Basically I have no major physical symptoms and two different haematologists, when questioned, have told me that, in view of the mental stresses caused, it would probably have been better if I hadn’t been diagnosed at all. All quite confusing and unsatisfactory.
Any info and advice welcome.
Hi @Murdoch it sounds to me as if you have straight questions to ask your consultants when you next see them. Perhaps you have a specialist nurse contact.
If it doesn’t feel right then you are entitled to ask the question.
Personally I think sometimes the mental stresses and strains are not realised by the medical profession.
Please let us know the outcome and be very kind to yourself
Thanks, Erica, as ever. I agree that the medics don’t seem to understand the mental stress of leukaemia diagnosis. I often have been made to feel that it’s me who is unreasonably and atypically anxious. Fortunately, reading this forum has made me realise that mental stress is the norm.
I will indeed try to find out why “probably Chronic myelomonocytic leukaemia (CMML)” is still hanging over me.
Best wishes, Erica.
Hi murdock my names Andrew iv had Chronic myelomonocytic leukaemia (CMML) for 12 months 50 days post transplant all going well so far im being treated at addenbrooks in Cambridge they picked my Chronic myelomonocytic leukaemia (CMML) very quickly they picked it up through my blast count i was originally diagnosed with Vera i think they call it overlap syndrome i would ask your doctor i hope this helps 
Hi, Andrew. Many thanks for your response. I’ll definitely ask my medics about overlap syndrome and my blast count. So pleased that things are going well for you. Congratulations and keep it up.
Hi Murdoch
I also was diagnosed with Chronic myelomonocytic leukaemia (CMML) after 18 months of blood tests. I had some very strange experiences leading up to my diagnosis 18 months after strange symptoms turned up.
I had the first 3 COVID vaccine shots in 2021.2 AZ AND 1 PFIZER. 3 DAYS after my Pfizer shot I endured a dreadful migraine and vision effects. I had suffered migraine with Aura since my teens but this was far worse and lasted much longer. The headache subsided but the vision effects lasted for months. Had eye scan eyes perfect. Shortly after this I developed red blemishes and pin prick spots on my legs. Attended GP practice. Could only see nurse practitioner. She referred me to dermatology. Dermatologists said it was a type of skin cancer and offered some special chemo cream . I insisted on a biopsy and this was carried out. It revealed the pin prick spots and blemishes were blood from broken capillaries leaking into skin. No further action. I googled the symptoms and found out it was thrombocytopenia ( low platelets). At next blood test a couple of months later I was urgently referred to HAEMOTOLOGY. The doctor was somewhat baffled. I asked if it was blood cancer he replied no. It was then left for another 3 months for another blood test. Platelets were falling and reached a low of 46 before recovering slightly to high 50s. Bone marrow test took place and although it was incomplete due to not enough material being taken and after another 6 weeks I was informed I had Chronic myelomonocytic leukaemia (CMML) a rare leukemia. Incurable unless a stem cell transplant is given which at my age was not advisable. At no time have they said it was a probable diagnosis. I am at present very well and except for my brush with thrombocytopenia have no symptoms and am on watch and wait. Thrombocytopenia symptoms have disappeared although my platelets are hovering around 60. I have studied Dr. Daniel Wiseman’s latest podcast as he is a expert on Chronic myelomonocytic leukaemia (CMML) at Christy hospital in Manchester. Very informative and pointed out to me by another patient on the forum. Blood cancer UK and Erika, and @ Chrissy D. have been so supportive. If only my haemotologist
were as informative I would be happy. The day they informed me of this dreadful diagnosis looking back was awful. A two minute conversation then a brochure to study and cheerio. Thank god for blood cancer UK and this forum. Hope you are well
Best wishes (sorry for going on)
@unclejack.
Wow! What a story of twists and turns and thankfully a happy ending. I couldn’t agree more that the advice and support from this forum compensates for the general shortcomings of our medical experiences. I will certainly look out for Dr Wiseman’s podcast and you have given me good material for my next consultation with the haematologist.
Many thanks for your interesting input and every good wish from me.
Hi Murdoch
I return to Haemotology at the end of this month. I intend chronicling my experience of Chronic myelomonocytic leukaemia (CMML) in the hope it may help others with a similar diagnosis. The reason I mentioned thrombocytopenia is twofold, firstly it is a known side effect of Pfizer mRNA vaccine AND a common symptom in leukemia. I may well be totally wrong linking my diagnosis to the Pfizer mRNA vaccine. But the diagnosis seemed to take so long i got the impression the haematologists were baffled or at least unsure of what was causing these abnormal blood tests. The mistake made at my first bone marrow test did not inspire confidence and to make matters worse a second bone marrow test was NOT carried out as arranged as they said it was unnecessary when I arrived. On top of that at my next consultation the doctor asked me why I hadn’t had the second bone marrow test! I explained that I was told on arrival it was not necessary by the biopsy team.
She was enraged by this situation especially as my records had NOT been updated. The haemotology dept I attend is absolutely chaotic overwhelmed and lacking any empathy. I am 72 years old so I console myself that at least I have had a decent lifespan and I really pity the many young people facing this dreadful diagnosis. Seems to me our once renowned NHS is now a real third world service, in fact many third world countries have a better service. I apologise for being so down I am going through a bad spell mentally. On the positive
side I am very well. No night sweats, no weight loss, or swollen lymph nodes. I regularly check symptoms. Everything fine and dandy. My wife believes my diagnosis is wrong.
As you have pointed out the stress of this type of diagnosis is difficult to cope with.
Hopefully my Haemotology dept is not typical.
Stay well
Best wishes @ unclejack
Hi @Unclejack, I was struck by a couple of points in your post, I cannot comment on your medical thoughts as I am a non medical person.
I also thought, as I so often do, how difficult it is for us having a hidden illness, and my greatest ‘annoyance’ is people saying ‘oh you do look well’ when I feel really ‘rubbish’ inside. My problem is I have a default smiley mask from childhood.
My husband has his head in the sand with anything emotional or medical.
Perhaps just let your wife come to terms with your diagnosis in her own time, perhaps it is called denial, although it can feel a lonely, isolated place for you. I know a lot of people around me could not take my diagnosis in and did not know how to be or what to say. I was always the strong, practical one that never had time off work.
I needed this forum for the support of people that made me feel I was not alone and understood me and what I was going through.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Look after yourselves and please keep posting
Hi again @unclejack. We have to remember that medicine is a science in its still relatively early stages and that its practitioners are just ordinary punters doing their best for us in very stressful circumstances and with very little time available for each of us. The government is also responsible for many of the NHS’s current difficulties. When it comes to individual patients, like you and me, personally, it is difficult to stay objective, it’s hard to forgive errors, it’s easy to blame the messenger, it’s tough to accept our fate. You and I have lived long lives and it sounds like your symptoms are pretty minimal now. So let’s just be glad that we’ve won the lottery. Because of the constant anxiety caused by my diagnosis and of my advanced age, both of my consultants have agreed that it would probably have been better had I not been diagnosed at all. I suspect that, for me and my wife, this is true. I do hope that you and your wife can just enjoy the fact that you’re “fine and dandy” and long may it be so.
@erika
Hi Erica thanks once again for your advice. I keep trawling through global websites searching for any positive news on Chronic myelomonocytic leukaemia (CMML).
I was really shocked at Murdoch’s experience with his doctors. How can probable be a part of a diagnosis? Also the part about perhaps we shouldn’t have given a diagnosis. These sort of statements inspire zero confidence in the people we rely on in such a awful situation.
I thought my own experience would be a isolated case but apparently not. On the other hand if these type of diagnosis is common perhaps we can have hope that it could be ‘probably not Chronic myelomonocytic leukaemia (CMML)’ I now fully understand why the wealthy go private or go abroad.
Anyway I wish you well and all the other blood cancer sufferers.
Regards
@Unclejack
@Erica
Hi Erica, hope you and all other blood cancer patients are ok. I have had a dreadful few days with back and abdominal pain, turned out to be a reoccurring disc problem with my back plus a reoccurring kidney stone problem thankfully.
After a couple of days of extraordinary pain at 2am Thursday morning NHS 111 handed over my case to the ambulance service. EMAS. The call taker said with a little giggle that all ambulances were occupied with life threatening incidents and would be for the next twelve hours! Anyway a taxi later I arrived at A.E. Time 3am. Blood pressure etc taken straight way. Due to my diagnosis my wife and myself were ushered into a small private room.
At 4.45 a blood test taken and vital signs checked again. Nurses popped in to offer us both a cup of tea and at 7 am light breakfast was offered . At 1.15 PM a doctor arrived to examine me. Very thorough. Although I was taking oral morphine pain was severe and I could hardly walk. He disappeared to see if the blood test results were available. At 2.15 pm he returned for another chat. I requested a scan take place in case spleen or liver was causing the problem.Scan took place after a debate at 4 pm. Result highlighted a kidney stone. Thankfully spleen and liver ok. As I was waiting I received a message from swiftqueue
cancelling my Haemotology blood test appointment. I contacted haemotology and my nurse said the blood test I had just had was the same as the haemotology test could be used for reference at my next appointment, which I was really pleased about. Anyway my blood test results were good PLATELETS for the third test in a row had increased to 76, RED BLOOD CELLS completely normal, nutrifils 1.59 same as last time. Even though I was in pain I was exuberant. Actually returned home at 6.pm. 15 hours in A and E is not a pleasant experience. The place was overwhelmed and doctors on strike. I have sympathy for all the staff trying to cope and they were very good to myself and my wife. But the ambulance service are in my experience DREADFUL. Never mind all well that ends well.My cancelled haemotology appointment takes place 5th October.
Best wishes
Uncle Jack.
Oh, @Unclejack 15 hrs in A&E sounds horrendous, especially when you were in excoriating pain and the scariness of not knowing what is wrong with you.
All I can say is to be ever so kind to yourselves and really look after yourself and please keep posting
@Erica
Yes I will. Still really pleased with my latest Bloodtest.
Thanks for your support
Best wishes
Unclejack.
@Erica and all Chronic myelomonocytic leukaemia (CMML) patients. Watched a video on u.tube last night. Chronic myelomonocytic leukaemia (CMML) expert in Florida said 70 percent of Chronic myelomonocytic leukaemia (CMML) patients at his clinic were asymptomatic. And he believes that research needs to be done into why the symptoms appear. He also believes not enough research has been carried out into Chronic myelomonocytic leukaemia (CMML).
@Erica
Hi Erica hope you and everyone are okay.
Just attended haemotology for my routine appointment. My consultant carried out the meeting. Very thorough ( I had not spoken to him since last march 2 months before my diagnosis) Answered all questions wife and myself put forward. He was very pleased with my blood test which was the best for over a year. Red blood normal nutrifils at the lower end of normal, platelets had risen to 76 nearly double their low point last May. I mentioned Vit D supplements and he pointed out that many people especially the elderly are very deficient in vit D. He actually put Vit D test on my blood test form for next appointment. I explained I had changed my diet considerably since diagnosis in May. I know I’m probably barking up the wrong tree but I spent hours researching the impact certain foods can have on the immune system blood count etc. and greatly increased those foods in my diet.
I am addicted to porridge Two bowls a day.
Shocked to find out the connection between oats and lymphoma! Apparently oats are sprayed with a powerful weed killer in many countries before harvest to help the crop dry.
This leaves a coating a banned carcinogenic residue called glysophate on the crop. Apparently In the US farmers are affected and winning damages against the manufacturers because they have developed lymphoma. The EU has banned its use but we haven’t yet. I now only eat organic oats. Which are not using this process. Same with eggs the cheap eggs produced in battery farms are dreadful. Not only are the birds kept in terrible conditions but are fed awful foods which badly affect the egg nutrition. Surprising what’s going on in the food industry. Anyway the consultant is keeping me on watch and wait. I noticed on my blood test form at my last appointment in July it said Chronic myelomonocytic leukaemia (CMML)1 ON THE FORM. This time it said Chronic myelomonocytic leukaemia (CMML) with no number. Hopefully that’s good. He explained that Chronic myelomonocytic leukaemia (CMML) can progress to Acute myeloid leukaemia (AML) but at this time blood is stable in fact has improved. Sorry for going on about myself and I know next test may be going in the wrong direction but I am feeling slightly optimistic.
Very best wishes to yourself and all fellow travellers on this journey
Yours unclejack.
PS. My slipped disc has settled and kidney stone causing no problems yet.
Hi @Unclejack after reading your post, I am sticking to my fairly healthy, balanced diet + the odd treats, and yes, I do take prescription Vit D.
Great to hear that your slipped disc has settled and that your kidney stone is not causing any problems yet.
Look after yourself
@Erica
Evening Erica. I to have a treat every week an enormous cream bun! Full of nutrients! Well that’s my excuse for eating it!!! All this healthy eating I’m starting to put a bit of weight on.
Hi all
I have been carrying out my regular sweep of the planet looking for articles on blood cancer specifically and cancer in general. Came across a u.tube interview involving Dr John Campbell and Professor Angus Dalglish who works for St. Georges hospital cancer school in London. The interview was 90 mins long.
I found it extremely interesting, shocking, frightening in equal measure. Apparently Professor Dalglish is a expert in cancer and immune response he was a major figure in the hiv aids research many years ago
I will not go into the details of the interview as I think that would not be appropriate as I believe professor Dalglish specialises in solid tumors. BUT it was a remarkable interview well worth the 90 minutes, but quite shocking.
Best wishes to all
Unclejack.
@Erica
More appointment cancellations. I was due to have another face to face appointment at haemotology on December 1st. Just received a cancellation letter postponing my appointment to the 22nd December. As this isn’t the first time appointments have been cancelled I contacted haemotology to just confirm the dates. They said the revised appointment on the 22nd of December was NOT on their system and the actual appointment was on the 29th December and would be a telephone call. To add more confusion blood test appointment was cancelled for unforseen circumstances. Then the rearranged blood test appointment was cancelled for unforseen circumstances. Great pity my GP practice does not carry out bloodtests. I think I have mentioned before my haemotology dept is chaotic and confused. In total since April I have had 5 cancellations! 1 bone marrow, 2 consultant appointments, two blood tests. Is this a typical experience? On the plus side I am quite well and still on watch and weight. Coincidentally I have a blood test tomorrow routine annual blood test. So hopefully by the end of the week I can find out the latest results. At least my GP. is excellent and will see me with no problems. Hoping you are well and all the other Chronic myelomonocytic leukaemia (CMML) gang are okay.
Best wishes
Unclejack.