Chrissy D
Thanks very much for your reply. You really dragged me out of my recent depression!
I am 72years old have been a keep fit fanatic all my life and still using exercise bike and weights every day as well as long walks with the wife. My symptoms are low platelets at present. I did have thrombocytopenia which led to diagnosis. I was on clopidogril, after haemotology took me off them in April the thrombocytopenia symptoms cleared.(penachet on legs). I have serious suspicions as to what triggered my CMML. Since 2021 my health has been on a roller coaster. Rightly or wrongly I strongly believe that a medication I received three times in 2021 led to this. I have absolutely no proof and accept it could all be a dreadful coincidence. I have a problem of total distrust in politicians and the establishment so that may explain my attitude. My mantra these days is follow the evidence not the science.
At least people like yourself who have vast experience of our common problem are keeping the people like myself in hope. I have found the blood cancer UK organisation and forum absolutely brilliant. Once again thanks.
Best wishes
Unclejack.
Tanya
Thanks ever so much for your advice. I just felt a little low.
Best wishes
Unclejack
Hi ChrissyD.
It is good to find another female with CMML, as you say it affects more males than females. Your post has given me a boost, as although I am quiet a positive person, to know that you can have this illness and be on watch and wait for so many years fills me with more hope.
Hi Peter
Itās good to have another CMML sufferer join our thread. I hope you stay well for years to come.
Chrissy D
Watched Dr Wisemanās lecture on u.tube via the link you kindly provided. Very impressed with the good doctor. I realise we are all individuals, but seems some are living with this disease much longer than I realised. His comments that the mutations some of us develop as we age were very interesting.
Best wishes
Uncle jack
Dear @Lyndam. Yes. We should start a CMML Ladiesā group as we are such rare birds!! Iām glad if my situation has cheered you up a bit. I was very gloom and doom at the beginning as in 2009 there was very little info to find about CMML. It was at that time classed as a sub-type of Myelodysplastic Syndromes but has since been kicked into its own Myelodysplastic syndrome (MDS)/MPN (myeloproliferative neoplasm) category which made us part of a much smaller group!
Have you had Next Generation Sequencing done at Addenbrookes? I had my first one done several years ago pre-lockdown, had a further one last year and about to get a blood test done to send off to Addenbrookes next week! They found a mutation called KRAS but the implications of that are not really known and also we donāt know how long Iāve had it as the technology was not available to investigate it when I was first diagnosed. So not sure if itās a goodie or a baddie!
Hope your disease behaves itself. Hope you can also watch that video. (Iām the one hosting it!!)
Hi @Unclejack
Glad you found the video helpful.
I just wanted to say to you that itās very likely that you have had this disease for quite a while before you were formally diagnosed. Your GP picked up some low white cell counts years ago. The clopidigrel was probably masking the thrombocytopenia and muddying the waters? I appreciate you are suspicious of the Covid vaccines but there does not appear to be any evidence of an upsurge of blood cancers following millions of doses given. Those of us in the blood cancer community were of course quite wary of vaccines that were never tested on immunosuppressed people, but ultimately it was a risk many of us chose to take, given the high risk of dying from Covid if you are immunisuppressed.
I know when I was first diagnosed, I was obsessed with finding out what had caused it. Was it residual chemicals or moulds on our new allotment? Was it the huge stress I was under in my job? Pre-diagnosis, I thought it may have been brucellosis caused by eating unpasteurised cheese in France?! 3 different depts at my local hospital failed to diagnose it until haematology at the 2nd attempt, got it right!
Iām just saying that I have eventually come to terms with the evidence that it can just be sheer bad luck in how your bone marrow starts getting the ārecipeā wrong. CMML usually affects males over 72 but some people can be unlucky and it can start earlier.
Youāre clearly still feeling fit and healthy, so treasure every day of that and long may it continue. 
Chrissy D
Yes your video was very enlightening and Dr. Wiseman clearly knows his stuff. I am a addict for research for many years. I am certainly NOT anti Vax. I have had every Vax going including the first three COVID shots Flu shots, pneumonia shot plus polio diphtheria and t.b.
I thought having had shingles a few years ago I was immune to a recurrence only to be told by practice nurse that was not the case so immediately I rolled up my sleeve and had the shingles shot. I assumed that the COVID vaccine was a normal type of vaccine. I didnāt realise that this mRNA technology was not a normal vaccine. As an aside my wife had her third Pfizer booster and almost immediately her blood pressure rose to over 190/95 and stayed there sheās now on two medications to control it. Needless to say she blames me for
persuading her to go for the shots! Anyway I promise not to go on about the COVID vaccines anymore. Just trying to prove I am very pro vaccines in general. Once again thanks very much for the excellent help your comments have given myself. Hopefully all of us affected by CMML stay well.
Best wishes
Unclejack
Hi ChrissyD
Yes I have had the sequencing done at Addenbrooks. I have pathogenic variants NRAS, KRAS, TET2 & PHF6. This was done & I received the results in December 2021. I have also gone down the route of finding stem cell donors.
None of my siblings were full matches, but several full matches were found on the register in case I deteriorate. My CPSS score was 2 due to the variants. I have not watched the video yet, but I will do. Hope you are well.
Lyndham
It must be great to attend such prestigious hospitals. Unfortunately were I am this level of care or even interest seems very lacking.
My consultant left the breaking of dreadful news to one of his staff who explained in a way that suggested that basically you are going to die but we canāt say when hereās A brochure have a nice day! I was then told because the bone marrow biopsy had failed to remove enough material would need a second biopsy. I attended the second appointment only to be told I didnāt need a second biopsy after all! The dept. seems totally chaotic. Nothing explained no info about possible treatments. Unfortunately all the doctors have English has a second language which doesnāt help communication.
This seems to be the standard experience in our local hospitals. At the start of this dreadful journey my Thrombocytopenia was diagnosed has skin cancer on my legs and I was offered a chemotherapy cream. Only when I insisted on a biopsy did the truth emerge. PENACHET from thrombocytopenia.
At the start of this journey after another blood test last October I contacted my practice to see if the results had returned. Yes and everything is fine no further action. Luckily my GP reviewed the test the following day to tell me everything was not fine and I was being referred to HAEMOTOLOGY urgently. I am very sorry to say the standard of nhs care in my area is usually atrocious. I realise my comments are not supporting the rubbish spewed out by the media about a health system the envy of the world. I donāt think itās even the envy of the third world. If only this post code lottery system changed. The only meaningful support I have is from blood cancer UK and the folk like yourself and the other patients who really do seem to offer a level of information and support terribly lacking in my local area. Admittedly my GP has been very good. I go for my blood test tomorrow and see my consultant on the 21/7/23. Of course that may be cancelled because that is the consultant strike day!
I do apologise for my ranting but I have had so much dreadful experience dealing with hospital depts over many years. I sometimes think whatās the point anymore. Sorry perhaps my next blood tests and appointment is taking its toll.
Apologies to everyone I am really down.
Best wishes
Unclejack.
Oh @Unclejack I am so sorry to hear you are really down.
Since my diagnosis 19 yrs ago my thoughts emotions have been all over the place.
I can burst into tears for no reason, some times I feel angry and I donāt know why, the āwhy meāsā can set in.
I can hear/read other peopleās experiences and feel jealousy.
As for before any tests, results and appointments, I feel anxiety and my rollercoaster of thoughts and emotions are everywhere.
That is why I find this forum so supportive I can just be me on here and say it how it is for me and itās OK.
I never thought I would say this but it actually helps me typing out how I feel.
Donāt forget the Blood Cancer UK support line is there for you on 0808 2080 888, I have found them so supportive.
Be kind to yourself and please keep posting.
I am sorry you are feeling so down, and I know that I am lucky with the hospital that is looking after me. One thing I have done from the start of my journey with this disease is to write a daily diary of how I am feeling and any symptoms I have. I also note if I have had a good day. Then I look back on the diary before I go for my next appointment and note any problems I have had. But it also reminds me that I have had more good days than bad days, and that is a positive for me. Like you the day I got the diagnosis of Chronic myelomonocytic leukaemia (CMML) it was very late afternoon and I think the consultant must have had a long day, as he did the same to me as you got, told me I had Chronic myelomonocytic leukaemia (CMML) and there was no cure, and dropped a booklet on the table and said everything you need to know is in here. After that day I cannot fault the care I have had. Take care and try to stay positive we could stay well for years with no progression.
Erica
You are absolutely right. Some days I feel strangely elated and others the total opposite.
Although I was only a very moderate drinker when I read that alcohol can effect platelets production I cut it out. When I say moderate I kept within guidelines. I have changed my diet into what can be said blood and immune system friendly foods. Probably a waste of time but I am trying to gain some control over events. The one thing that gives me some solace is I retired at 60 and have had 12 good years with my very patient and understanding wife and also at 72 I have had far many years than many struck down by cancer. My elder brother died at 36 of pancreatic cancer leaving a wife and three young kids. Now that is really dreadful. On the other side of the coin one of my neighbours contracted lymphoma at the age of 58 he died in 2021 at the ripe old age of 86 god bless him. He fought it for so many years proving never give up. Anyway thanks for your continued support.
Best wishes
Unclejack.
Hi @Unclejack I choose not to drink, it was no hardship as I never drank much
I have chosen a healthier diet, but with the occasional (chocolate) treat so I do not resent it.
I also have a hot chocolate drink at 9.30, made by my husband, and he has perfected it. I probably still have it round my mouth tonight!!!
I think that you have hit the nail on the head when you say that you are trying to gain control over events. That is so true no wonder I get so frustrated and resentful I am trying to control the uncontrollable.
Thanks so much, I get to know myself better every day.
Yes, best wishes and I think that we support each other on our forum.
Hi @Lyndam.Good to know you have some matched donors should the need arise. But fingers crossed you stay stable for a long while. My brother was my matched donor but after I turned 70 I decided I wouldnāt have a stem cell transplant so he was pleased to be off the hook after 12 years!!
Take care
ChrissyD
It is good I have matching donors as so many people are not so lucky. I am hoping I never need it as I have been told due to underlying health conditions I have, the outcome may not be very good. Anyway I hope you stay well for many more years to come as you have done so well and have given all us new Chronic myelomonocytic leukaemia (CMML) sufferers hope for the future.
Chrissy D/Lyndham
Yep, I was staggered to here your experience so far Chrissy. Just goes to show all is not lost and not to give up. Your posts and Ericaās have been a godsend trying to come to terms with this diagnosis. LONG MAY WE ALL CONTINUE.
Best wishes
Unclejack
Hi @Unclejack @ChrissyD @Lyndam and everyone, what lovely sentiments @Unclejack yes, Long may we all continue. Best wishes to everyone
Hi Erica/Chrissy D/Lyndham.
Suffered a conjunctive haemorrhage on left eye usually harmless and very common. But I thought with low platelets it could cause problems. Spoke NHS 111 who arranged appointment at local urgent care centre. The nurse examined it took blood pressure temperature etc. She pointed out very common usually harmless BUT bearing in mind my diagnosis if it worsened A and E straight away or if any other bleeding took place. She also advised seeing GP Monday morning. As anyone else had this experience and if so did it settle down naturally?
Best wishes
Unclejack.
Hi @Unclejack it might be fairly common, I donāt know, but it sounds pretty scary to me.
It sounds as if you did the right thing and got a sensible response from the nurse.
Why do these things always happen at the weekend???
Be kind to yourself.