Hi @Lyndam and @Unclejack just a further handy tip is @ and then type the user name exactly as it should be i.e. @Unclejack has not get a space in the middle.
Take care of yourselves
Hi@Erica @Lyndam @ChrissyD
My dreadful blood blister fell off this morning.
Bled a little but much better. The support team contacted me about my 2nd bone marrow test which was cancelled also advice about future drug trials. Heidi by e.mail and Tanya over phone. Certainly great support. Haemotology contacted me to inform me my next appointment is not being brought forward!
Never mind at least my injury is now just a medium sized red blemish, a bit sore but hopefully a few days more should be ok. Just got to be careful with food.
Best wishes
@Unclejack.
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Oh @Unclejack I think I am pleased that your blood blister fell off, but if you are like me it must have been a bit of a shock.
I have had some scabs on my head for 4 yrs (reoccurring head cancer) and they came off last night after new medication applied for a week and I am coming to terms with their loss today!!!
Yes, be careful with food.
Look after yourself
@Erica @Lyndam @ChrissyD . Morning everyone. Very good news from Christie hospital excellent blood cancer trial results reported in the Mail online. Fingers crossed for those of us who it could help. I wonder if this is anything to do with Dr. Daniel Wisemanās trials as mentioned by Chrissy D? At any rate sounds very positive.
Best wishes
@Unclejack .
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@Unclejack I will copy your post to Blood Cancer UK as well for you @BloodCancerUK-SupportTeam
Dear Chrissy,
I just found your link to Dr. Wisemanās video and it was so helpful. Thanks a lot!!
Wishing you and all Chronic myelomonocytic leukaemia (CMML) patients here all the best, take good care of yourselves. It helps me a lot to read all your experiences.
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Hi @Silke
Welcome to this little group of rare āuns! Though Iām sure this isnāt a club youād have wanted to join! 
Thatās a great video trying to explain a very rare disease with so many variations in symptoms and outcomes. Dan Wiseman is great to have looking after our interests and so glad that he allowed us to video his session as itās a great resource.
How are you doing? Have you been diagnosed long and how are you managing-physically and emotionally? It does help to be in touch with others I find.
If it helps you to share, please know weāre all ready to send words of comfort. 
Best wishes
Chrissy
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Hi @Silke a great big welcome, you and @ChrissyD please do not feel you are isolated we are all a forum family on here.
I find a lot of us do share similar fears, thoughts, feelings and practicalities no matter our diagnosis.
I look forward to hearing more about you so please do keep posting and really look after yourself
Dear Chrissy
Thanks a lot for your message!
No, it is not a club I ever wanted to join - but it is not me who was diagnosed with Chronic myelomonocytic leukaemia (CMML), but my dad (when he was 61).
He was on watch and wait for some years but last year it seemed out of control. I tried to find out as much as I could about Chronic myelomonocytic leukaemia (CMML) and contacted several specialists in the German speaking countries.
Unfortunately, he passed away but I still try to support all the research that is done for this rare disease. And of course, I am very much interested how other people cope. As you say: it does help to find others ā¦ it is so important 
Sending all my love and energy to you and all the others here! Keep on fighting
and take good care of yourselves!
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Hi @Silke . So sorry to hear about your Dad. Chronic myelomonocytic leukaemia (CMML) is a strange disease. No two people seem to experience it in the same way. Some people have low white cells, others have high ones, so the treatments, if any, are very different.
Thank you for being so supportive to us all.
Chrissy
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Yes, you are right! It is a very complicated disease and to be honest: I also struggled with the āwatch & waitā strategy a lot (at the beginning, because I did not understand it).
My dad had very high white cells, very low red ones and very low amount of platelets. It was very difficult for the doctors to try to ābalanceā all these cells without affecting the others in a bad way.
It was very interesting for me to learn that there are people with Chronic myelomonocytic leukaemia (CMML) who do not have any symptoms for many years (what is great!!).
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Oh @Silke I am so sorry you lost your Dad to Chronic myelomonocytic leukaemia (CMML) , blood cancer can be so cruel, especially at only 61yrs old.
Watch and wait (or active monitoring) is a strange concept isnāt it, and I have been on it for many years.
When I was first diagnosed I could not explain to others what I did not understand myself.
Everyone, including me, felt you get diagnosed, have treatment, get cured and we all go back to ānormalā, How wrong could I be.
I cannot thank you enough for supporting all the research that is done on Chronic myelomonocytic leukaemia (CMML).
Really look after yourself too and please do keep posting, we are here for you too xxx
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Dear Erica, thanks a lot for your kind words!
It is good to read that others had the same problem with understanding this disease and the watch&wait strategy. I think this is something quite special with blood cancer.
I will do whatever I can to support 
it is so important, I hope there will be much more possibilities of treatments soon for all of you
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@Silke
Hi, I read your comment yesterday. Hardly slept last night. Dreadful tragedy for yourself and loved ones. Sometimes I feel I have been living in a fantasy world trying every possible way to slow my Chronic myelomonocytic leukaemia (CMML) down. It is like being in the battle of the Alamo, you cannot surrender but deep down you know the grim reaper is watching. On the day of my diagnosis last May after 18 months of tests and being told it was NOT blood cancer the dreaded diagnosis was released. In the most off hand way I was told I wasnāt terminal but that was my future. Anyway you have my deepest sympathy and please keep posting we need all the support we can get.
Very best wishes
Unclejack.
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Dear Unclejack, I am sorry you couldnāt sleep last night ā¦ I also couldnāt. Very strange since one week ā¦
Interesting that you were also told for so long that it is NOT blood cancer! With my dad it was the same. For years they told us it is NOT blood cancer but a rare form of anemia. Interestingly - after his death - I found a document where the diagnosis Chronic myelomonocytic leukaemia (CMML) was already written down in 2020 when they kept on saying it is ājustā anemia.
Did you have certain symptoms which lead to your diagnosis?
I know how difficult your situation is. You describe it very well. But the good thing is that there are quite a lot of Chronic myelomonocytic leukaemia (CMML) patients who live for many years without any problem, just on the watch & wait. Try to make the best of every day, do what you love with your loved ones
And take good care of yourself, try to support your body as much as you can. Get enough rest, lots of vitamins, moderate exercises ā¦ try to get back control of your life and donāt let Chronic myelomonocytic leukaemia (CMML) control it. Sending you all my positive energy and wish you and your family lots of strength to cope with this disease! Very best wishes to all of you
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Hi,
I was diagnosed with Chronic myelomonocytic leukaemia (CMML) September 2015, and to be honest Iāve just got on with life with little interruptions, the odd infection, need for venesection, but all in all a good life. Iām 61 now, my exhusband left 3 years ago. I live alone, but have 2 very close and supportive friends.
This month things took a big turn down hill. All bloods have changed, blasts in bone marrow, gene mutations etc.
Im one round of blood transfusion in, another one booked next week. Azacitidine treatment may start in the next couple of weeks.
Anyone been treated with Azacitidine? How did it go? Any hints on coping with the side effects?
Look forward to all your thoughts.
Cheers Robyn (Ms).
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Hi @Robyn gosh a lot has happened to you over the last few years.
Then a great big shock which will take time to come to terms with.
Be very kind to yourself.
I hope others will be able to share their experiences on Azacitidine .
All I would say is perhaps keep your medical team aware of all your side effects and ask for their advice.
I am aware it is the bank holiday weekend so if you need to then ring the haematology dept.
Look after yourself and please let us know how you are getting on.
@Silke @Robyn @Erica
Hi, my symptoms were initially a pink patch on my lower left leg. I thought it was just a graze I hadnāt noticed before. A few days later pin prick type of spots appeared. I saw the nurse at our GPs practice (impossible to see doctor). I was referred to dermatology. They diagnosed skin cancer and offered me chemotherapy cream. I asked that a biopsy was performed. The result of which was that it was capillaries leaking into skin. I thought no more about it. No alarm bells at dermatology. I had a couple of blood tests which were all over the place then my blood recovered. A following routine blood test a few months later raised concerns and I was referred to haematology. A brief examination of the size of my spleen reviewed nothing. But thrombocytopenia was identified and a bone marrow test took place. Unfortunately not enough material was removed to carry out a full diagnosis. One doctor requested another bone marrow test but was overruled by consultant.
She then informed me I had Chronic myelomonocytic leukaemia (CMML). I had no other symptoms and the tiny blood specks disappeared. During the last 6 months my cholesterol level fell to 2 so I contacted GP who said that that was excellent, I then asked if it was necessary to keep taking Atorvastin statins and she decided it was as did haematologist. I checked out this on several reputable websites and found that it needed to be checked out as that level could be a symptom of something serious. Unfortunately my concerns landed on deaf ears. I have little confidence in our failing NHS and am still on watch and wait and only receive telephone appointments every 10 to 12 weeks. Last week results of blood test indicated my platelets had fallen from 80 to 50. I do not have any symptoms of thrombocytopenia and no recognised symptoms of Chronic myelomonocytic leukaemia (CMML). I was suffering neutropenia but that returned to normal levels last December. At my diagnosis I had 10 abnormal blood count levels that is now 4 low levels. I have totally changed my diet and still use my exercise bike 45 mins every day and me and the wife go for long walks. Which at 73 is not bad. I will not repeat my suspicions of what I believe triggered this as to say anything is classed as a symptom of insanity. But thatās were I am at present.
Best wishes
Unclejack.
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Hi Uncle Jack,
My initial symptoms were fatigue. I am ex-NHS. It was actually the lab tech that flagged repeated abnormalities in my monocyte count. The haematology consultant was a bit OCD so it took 3 months to confirm Chronic myelomonocytic leukaemia (CMML). The levels were very low but none the less I had it.
I worked in A&E for the last 7 years of my career, but eventually had to give up last year at 60, just didnāt have the energy. If you are hinting the covid vaccines have something to do with it I wonāt argue with you.
This last year was a good year until January.
I really donāt fully understand how Chronic myelomonocytic leukaemia (CMML) works. Iāve had Polycythaemia which is now gone, still have very low platelets 19 at the moment. Iām anaemic now hence the transfusions.
The medical profession is somewhat in the dark with Chronic myelomonocytic leukaemia (CMML), more research is needed.
Keep well x
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@Robyn
Good morning. Seems you had a far quicker diagnosis than myself! My Monocytes climbed to 190 in December but last week fell to 170.
The normal top limit is 100. The latest number slightly reversed the trend. My platelets are my concern at the moment, they seem to be on a roller coaster! I did suffer from neutropenia at time of diagnosis but that has cleared. My suspicions about COVID vaccines only started in 2021. I received two Astra Zeneca shots and everything was ok. My third shot was a Pfizer mRNA shot. Two or three days later things happened both to myself and my wife. Anyway canāt turn the clock back. I havenāt had a COVID vaccine since 2021. My neighbours who elderly have had many boosters and always have COVID infections. I am vulnerable but strangely donāt have any problems with any type of infections up to now. Since diagnosis I have gorged on foods full of antioxidants, minerals ,and vitamins. Couple of weeks ago I read a article by a Dr Li ex Harvard medical school that high cocoa dark chocolate taken has beverage two cups per day one square a cup has had some effect on leukemia cells as has mango consumption. Trying them both at present. I also drink cups of various green teas. I was disappointed to read that cows milk could suppress platelet production in some people. Now using oat milk in my porridge. I am having a bad time with osteoarthritis in my shoulders and a bone spare has developed. I am starting to think I am developing rheumatoid arthritis. Especially after seeing that one of my earlier blood tests said borderline rheumatoid. I found this on my GP blood test record via the NHS app. No mention to myself from doctors about this. I exercise all the time has apparently exercise can boost white blood cell production.
Blueberries, raisins, bananas in my full fat yoghurt start the day along with a handful of pumpkin seeds. Only supplement I take is a large dose of Vit D. I drink a tablespoon of olive oil day and night. I also have two dishes of organic porridge every day. Cruciferous vegetables, organic mushrooms and organic eggs are another staple. To be honest even if I was lucky enough to recover I would still continue with my diet lovely grub! Another drink that could be beneficial against leukemia is chamomile tea. No miracle yet but will never give up trying after all what have we to lose?
Best wishes
Unclejack.
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