Seems to be a rare type, anyone else have this diagnosis?
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Hi @Unclejack a great big welcome to our forum and I hope someone with your diagnosis can share their experiences.
If you would like to speak to someone then the Blood Cancer UK support line is there for you on 0808 2080 888.
I look forward to hearing more about you.
Look after yourself and please keep posting
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I was diagnosed with CMML in September 2021 stage 1. I have been on watch and wait and currently doing well.
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Hi @Lyndam welcome to our forum and you have already shared your experience and showed one of the advantages to our forum.
I really look forward to hearing more about you, how are you and @Unclejack doing with the emotional impact of a CMML diagnosis.
Really look after yourselvrs
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Thank you for your kind words. I am doing good. After the initial shock I decided to get on with life and enjoy it as I have more good days than bad and am very grateful for that.
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Erica and Lyndham.
Thanks very much for your comments. Boosted my morale somewhat. I am torn between two responses concerning diagnosis.
Firstly one of Calm acceptance that I am 72 and should be grateful for those years as tragically many young people and children face cancer when their lives have only just started.
Secondly I rage at the fact that after years of keep fit, and healthy eating I have developed this condition. I have no symptoms,and still carry on normally,an hour a day every day exercise,long walks with my wife. my platelets are low, but no symptoms yet. My nutrifils are low but no symptoms yet. My red blood cells are normal. I think how can I feel so well and be so ill. As an aside I have grave suspicions about the mRNA covid shots. My wife and myself had our third shot in October 2021. We were the first in the queue at our walk in centre.Three days later our problems Started.
Wife’s blood pressure rocketed to 190/95 and stayed high until a second medication was prescribed. As for myself I developed tiny red blemishes on my legs some like pin pricks. I was referred to dermatology who diagnosed Bowden’s disease a type of skin cancer. I asked for a biopsy which revealed not skin cancer but capillaries leaking into skin. I believe now this is what they call penachet? I know most people will say I’m bonkers but it just seems a huge coincidence especially when other health problems arose. I apologise for ranting on but best wishes to yourselves and ALL cancer patients.
Keep fighting
Yours uncle jack.
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Hi @Unclejack and @Lyndam, I do not want to high jack your CMML post but just to highlight the similarities I have Chronic lymphocytic leukaemia (CLL) a more common blood cancer,
I was diagnosed at 53yrs old. I was completely numb in shock at first.
I am now 73 yrs old and my 70th birthday, just pre Covid, was my best ever with family, friends and Colin the Caterpillar cake.
I had the ‘why me’ rage and ‘survivors guilt’.
I am a great walker, a Pilates girl and life is good. I manage my symptoms like fatigue and I am fitter now than I have ever been. Life is a mixture of highs and lows, but mostly highs for me.
I have had all my Covid jabs with no ill effect.
I have had skin cancer on my head twice and look like a combination of Worsel Gummidge and Friar Tuck.
So perhaps what I am trying to say is that most people on here share the similar emotional aspects on here, if not diagnosis.
Look after yourseves.
.
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Erica
Wow, a great post really appreciated.
So glad I decided to comment on the forum really boosted me
Perhaps things are not hopeless after all.
Best wishes
Unclejack.
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Hi Unclejack.
I was diagnosed with CMML when I was just turned 66 & like you my initial response was why me & then I thought why not, why anyone. The first couple of weeks I was trying to get my head round this diagnosis & thinking how long do I have left. But the turning point came when my husband and I were at a local steam rally & I thought I might never get to go to another one. Then it dawned on me that not one person there knows how long they have left. It was like a light turning on & I decided then to get on with my life and enjoy it as best as I can. Also I wanted life to be normal as it also affects our families as they share the worry too. I am under the care of Addenbrooks Haematology bone marrow failure clinic in Cambridge, & have had excellent care. On the subject of Covid jabs, I have had 7 now and know there is no link there to my CMML as my bloods were going wrong before covid. My GP picked up low platelets and raised white blood cells in a routine annual blood test. When the levels reached a certain point I was then referred to the hospital and a bone marrow biopsy done the following week. A few weeks later I had the CMML diagnosis. I have a couple of rouge genes that in some cases are known to mutate, but this is a rare leukaemia and my specialist advised that there has not been enough research done on CMML to be able to answer all the questions we may ask. I cant say I don’t worry at all as like most people with blood cancer, you get anxious just before you go for your next blood test and hospital visit or phone call, until you get the results. But apart from that I have more good days than bad, and my main problem is fatigue at times, but I know then to slow down and rest. I wish you all the best and am happy to keep in touch through blood cancer Uk as I had not found anyone else with CMML.
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Hi Lyndham
Once again thanks for your comment. Yes certainly I’d appreciate swapping experiences in this journey. I have a appointment on the 21st July hopefully blood test will be stable.
Up to now my platelets have been on a roller coaster ride. They Hit a low of 46,000 and a week later recovered to 58000. Fingers crossed a small improvement in July would be nice. I am at present concentrating on exercise and diet. My red cells are ok. But nutrifils are a little low. Oddly my GP many years ago spotted abnormal nutrifil level but said that was the level they had been for many years. That was over 20 years ago. He said that was just the way my bone marrow worked. No individual is the same. Also has a blood donor I had to stop donations for a while as slight anaemia was recognised, all this years ago. At the moment I feel completely well physically. When diagnosed I was shocked as the consultant had said he did not suspect blood cancer. After a few hours of dread I suddenly thought hang on Im 72, my dad died at the age of 57 of a aortic aneurism. My brother died at 36 of pancreatic cancer. On that basis I pulled myself together. There’s always somebody worse off than yourself. Hope you continue to feel well.
Best wishes
Uncle jack.
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Hi Lyndham
Blood test on the 13th July followed by haemotology appointment on the 21st IF THE STRIKE DOESN’T CHANGE THAT. I had thrombocytopenia for some time before diagnosis. Tiny blood specks in lower limbs.
I have had low platelets for some time. In April I suffered a small bleed on surface of one eye.
I was on clopidogril blood thinner at the time and after a conversation with GP haemotology advised to immediately stop taking them. Over the following week’s thrombocytopenia completely disappeared and as yet to return.
Have you had experience of thrombocytopenia? I am still feeling COMPLETELY FIT AND WELL AND HOPE YOU ARE.
Best wishes
Unclejack.
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Hi unclejack.
Yes I do have thrombocytopenia, my platelets range between 101,000 to the lowest at 71,000. At my last blood test it was 91,000. I do get the odd petechia spots now and again, usually in my elbow crease. I also have monocytosis, which is in my case slightly raised white blood cells. I am due back at the hospital on the 21 August for my next check up. As my bloods had been reasonable stable for 18 months they have allowed me to go 6 months between checkups. I have my support nurse and if I need to go back sooner I just need to call her. Like you I am lucky to still feel reasonably well.
I hope your blood test on the 15th goes okay, keep in touch.
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Hi Lyndham
Thanks for your reply. I am even more confused than ever about my sudden ending of Thrombocytopenia. My platelets are fluctuating between 58,000 down as low as 46,000 then after one week a rebound back to 58,000. That fall and rebound seem to be linked to my being taken off clopidogril blood thinners. As I write I have no noticeable Thrombocytopenia yet my platelets are much lower than yours. Perhaps my platelets have recovered somewhat since my last blood test seven weeks ago. Hopefully my test next week and haemotology appointment a week later will reveal all. Sorry for going on about myself but our problem seems to be so rare and your longer experience is vital in mapping the progress of this disease. As an aside I stupidly walked into the corner of a coffee table a really bad impact. I was expecting really dreadful bruising but elevated and iced my leg immediately. Amazingly my leg only had minor bruising and has almost cleared. Considering how low my platelets are especially in comparison to your own I was expecting a dreadful bruise. Just one more point other than thrombocytopenia I seemingly had no other symptoms absolutely nothing. Eat like a horse, no weight loss, no night sweats, no swollen lymph nodes, no infections YET. I religiously exercise every day and eat loads of fruit and vegetables. My alcohol consumption is negligible and I have never smoked. I am probably deluding myself but I have never felt better. I start the day with yoghurt, raisins, bananas, blueberries and loads of porridge plus a glass of pure orange juice. And I finish the day with a similar meal plus a couple of squares of 85 percent cocoa chocolate. Still get depressed about the future though. Anyway all the very best to you and I will post again after my next appointment hopefully my platelets etc will catch your levels. Good luck at your next appointment.
Best wishes
Unclejack.
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Hi unclejack.
I did take blood thinners for a while, but now only take aspirin. The blood thinners you took would have caused the platelets to drop, which is why they stopped them. I was told at the start when my platelets dropped to 71,000 that if they dropped much lower I would have to stop the aspirin. The platelets help the blood to clot and I was told when they drop to low you are likely to bleed more easily. I have other underlying health conditions that maybe make me fatigued as well. I had a pacemaker fitted just over 5 years ago due to an electrical problem amongst other things. The one question they kept asking at the start of my journey was if I drink and smoke. I have always been t total and have never smoked, so can’t blame that. I have lost a small amount of weight and had a few night sweats. I think there is just not enough data on CMML to answer all our questions. Take care and keep in touch.
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Hi Lyndham
Absolutely, I was told the same about clopidogril. Haemotology said my platelets level was such that almost no chance of a blood clot developing. Unfortunately my experience with our local hospital has been very mixed. At the start of my journey they misdiagnosed thrombocytopenia as Bowden’s disease a type of skin cancer without a biopsy.
I insisted on a biopsy which thankfully was negative. Although they never mentioned the word thrombocytopenia another dermatologist said the biopsy revealed it was capillaries leaking into skin. I later found out by my own research that is a symptom of thrombocytopenia. I was diagnosed with a Tia after being told by a and e that the brain scan showed no sign of a Tia and it was a migraine. Then a neurologist said it was definitely a stroke later corrected again. Only my GPs both excellent seem to have a interest in my blood problems. As far back as march of last year I asked the question could this be cancer. The GP said in a worst case scenario it was a possibility. But a second blood test showed a improvement so only in my routine blood test October last year were alarm bells ringing again. Even then I as misinformed that my blood test was fine by a receptionist. Quickly corrected by my GP who referred me to haemotology. I asked the haemotologist if he suspected cancer and he said categorically no.
Eventually bone marrow test confirmed diagnosis. Even then at diagnosis I was told not enough material had been taken during the biopsy and another one was arranged. I turned up for my second bone marrow biopsy only to be told this was no longer necessary. So I have little trust in our local hospital. Once again I apologise for ranting on, but it does seem the NHS can be absolutely
fantastic or absolutely horrendous.
Best wishes
unclejack.
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Hello Lyndam, I too am on the watch and wait, diagnosed with CMML in April 22. To be honest, I wouldn’t have know that I have a problem apart from the fact that whilst undergoing treatment for bladder cancer, my CT scans revealed that my spleen is growing bigger.
Let’s hope we are both on the watch and wait for many years to come ! Good luck
Cheers
Pete
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Good day uncle Jack
Yep, I got the CMML diagnosis April 22. On the watch and wait and hoping to be there for quite some time.
I have no symptoms apart from low platelets and a growing spleen. This was only noticed after CT scans whilst having treatment for bladder cancer.
I hope you continue to be symptom free for many more months / years
Good luck with it
Cheers
Pete
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Hi Pete,
Thanks for the reply. Hope you are doing well.
Seems not many of us CMML patients around.
After symptoms going back to late winter 2022 I was finally diagnosed on the 19th May 2023. Low platelets myself at the minute. Blood test this Thursday visit haemotology on the 21/7/23 unless they are on strike. Stupidly I walked into the coffee table 10 days ago and shin is a nice yellow/green colour. Very down at the minute. Probably research fatigue! Keep in touch.
Best wishes
Unclejack
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Dear@Unclejack.
Sorry to hear of your travails with your CMML diagnosis. I was diagnosed in 2009 after the disease actually kicked off in 2008 (or possibly before that!!). Like you and others, I’d led a blameless life, having been a wholefood vegetarian since my early 30s, non-smoker and a lightweight on the alcohol front!! And to get so ill at 58 from a disease that usually affects makes over 70, I was a little miffed and very angry for quite a while!!
However, I really mustn’t grumble as I’ve not needed any treatment for 15 years, seeing Prof Warren at Addenbrookes and I haven’t been particularly affected by infections or problems due to low platelets ( around 60-70).
I wondered if you might like to watch this video about CMML led by Dr Dan Wiseman who really is the ho-to expert in CMML.
Hopefully, with time, you become more accepting of your diagnosis and less anxious about it the more you learn to live with it?
All best wishes
Chrissy
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Hi @Unclejack, I’m so sorry to hear you’re feeling down. It’s so understandable to feel that way and it’s natural to have ups and downs. Please don’t hesitate to reach out to our Support Team if you’d find it helpful to talk things through (Blood cancer information and support by phone and email | Blood Cancer UK). We’d also be happy to talk through other avenues for support if you’d fine this useful. Take care.
Best wishes,
Tanya.
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