I’m from France (but unfortunately there isn’t such board like here to talk about Myelodysplastic syndrome (MDS) and Chronic myelomonocytic leukaemia (CMML))…
I’m MD but not haematologist at all and not GP… For several weeks, I’ve read a lot a articles on the subject and board like yours.
My dad just have been diagnosed with Chronic myelomonocytic leukaemia (CMML) (not genetic or cytogenetic available yet).
Happily no blast in peripherical blood, even in bone marrow so he’s Chronic myelomonocytic leukaemia (CMML)-1. He is asymptomatic, diagnosed on annual blood smear.
Hb : around 13, Neutrophils ok, Monocytes around 2, and platelets around 60000.
I think Chronic myelomonocytic leukaemia (CMML) is there for several years (he was slighty over 500 for monocytes which is the new limit for diagnosis and slighty over 10 % in 2021).
He is on watch and wait, next appointement in october and has blood control regularly.
Just here to find some support. Your posts have helped me a lot last month…
Hi @Matilda and welcome to the forum.
I’m glad it has helped reading some of the responses but I’m glad that you have posted as we can support you through this. I’m also sure your posts will support others as well.
It must be a lot for you and your dad to process. I think we all understand that feeling. It can be a very emotional time.
How are you both doing?
Please keep posting. I look forward to hearing more from you
Yes - I know that feeling of thoughts running around your mind, especially those worse case scenarios.
You have a lot going on and it’s all hard to process.
Just be kind to yourself and take each day, morning, hour at a time X
Hello @Matilda a great big welcome to our forum.
So sorry to hear about your dad’s diagnosis.
You don’t need me to tell you that diagnosis, treatment methods and drugs might be different in different countries.
I have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 20 yrs ago and I am still on watch and wait (active monitoring)
Of course you are feeling sad and apprehensive and probably a lot of other things, and your mind is going in all directions, I think that is natural.
Yes, it is hard for you and who asks how you are except us on our forum.
I find this is the one place where I can say how it really is for me, so we are here for you and please do keep posting
Good morning Matilda
I was diagnosed with Chronic myelomonocytic leukaemia (CMML) 14 months ago. Although symptoms began in early 2022. Diagnosis was slow. Blood count on a roller coaster journey. I am 73 so no chance of a stem cell transplant. I am very well and would think everything was fine if not for the blood tests. In fact my blood tests have gradually improved since diagnosis. I dramatically changed my diet after diagnosis and it may be a coincidence but that’s when blood count started to improve. Low platelets is my main problem anywhere between 50 to 80 at present. Neutrophils have been low but since last September have shown improvement. I may be talking to soon but for some inexplicable reason I don’t develop infection or colds anymore. Your comments are very informative, Chronic myelomonocytic leukaemia (CMML) seems to be quite rare and information is thin on the ground. Please keep posting, I sound very selfish discussing my own experience but information is very very useful. I hope your father is okay. When I was diagnosed I was shocked and worried. Then I thought there’s children out there facing this so I got my act together and decided I will fight this problem and never ever give up.There are people on the Forum who have had blood cancer for many years, so all is not lost. We all stand together. VERY BEST WISHES TO YOU AND YOUR FATHER AND FAMILY
Unclejack.
Thanks for your answer. I have read a lot of your posts. Thanks for it !!
He didn’t want to talk about it since he knows he had chronic monocytosis in early 2024 (I know that for several weeks because my mum told me he has seen a haematologist…). Maybe not to worry us, don’t like to talk too much about those things.
I think my mum support him a lot. I don’t really know how he feels… I hope he doesn’t look things on web (last thing to do obviously).
He has to control blood every 10 days. Hope platelets will be stable
As I said in an earlier post, who asks how the carer is so perhaps it might be worth checking in how your mum is and ask her or offer support to her, it is one thing I regret that I did not do enough of in the past in another situation.
Some people do not want to communicate much and take their feelings internally, I am one of those a bit.
Please do keep posting and really look after yourself
It’s difficult to ask cause I don’t want they see me so worried (she has regretted to told me at the beginning when I recall the day after with a lot of questions), don’t want to increase their concerns.
She has told me haematologist was good and kind…
And she said he was really on a early early stage. That’s quite reassuring, they ve seemed in a good mood after the appointement. I was really happy about it too…
Just hope the next appointement in three months will be reassuring after all the analysis.
Hi @Matilda I think that it is natural to be in shock and worried and want clarification.
It sounds that it was good news.
Please do keep posting and we want to know how you are really feeling on our forum.
Be very kind to yourself
@Nichola75
Hi Nichola just read one of your posts from a while ago about sleep problems. I have always had problems sleeping. As you probably know I research everything concerning diet.I came across an article concerning the spice nutmeg.
I tried the recommended teaspoon of nutmeg at suppertime. Found it very effective. BUT you have to show caution taking a teaspoon is ok, but heavy doses can apparently cause LSD type effects and be dangerous. Who would have thought the brown powder my late mum sprinkled on egg custard could have such strange effects! Surprising effects from this innocent spice.
Best wishes unclejack.
Hey there @Unclejack, just wanted to add that nutmeg is part of the nightshade family of plants and can be toxic and terrifyingly hallucinogenic in as little as 2 teaspoons, so it’s probably not the best herbal supplement to recommend for insomnia considering its array of side effects.
Unsure if you read the guidelines when you signed up as a member of the forum but unless we’re doctors it’s not wise to recommend remedies and treatments. I’m sure you wouldn’t want anyone to poison themselves following your dietary recommendations.
There are many vulnerable people who use the forum with severe illnesses and weakened immune systems and the potential toxicity from a herbal remedy would not be wise!
@Duncan
I did mention one teaspoon and the dangers of LSD type effects. There is no need to respond to ANY of my comments just delete them you know the procedure.
Hey there @Unclejack, I can’t delete your comments, but I can offer advice like you and every other member of the forum. Apologies for triggering your offence, I did not intend that. I simply wanted to add context for others regarding the article you read and shared.
For what it’s worth, there are lots of other natural remedies for insomnia with no potentially toxic side effects like essential oils and melatonin, speaking as someone who has experienced terrible sleep for decades.
To all who have read my comments on my personal diet. I am luckily still on watch and wait. I do have conversations with GP and consultant about the changes I make. The reason I changed my diet was simply a determination to fight this terrible Chronic myelomonocytic leukaemia (CMML) with everything I could think of. That was because I was told by consultant that the only treatment was a stem cell transplant and I was to old at 73. The only info I was given was a cancer UK brochure which stated that the median survival was 8 to 30 months. This was may last year. Everyone is different and you can live much longer than these figures or shorter. So after 48 hours of fear and shock I decided I was going to fight this with the only thing that was available to me and that was diet. The first thing I did was see my GP to discuss Vit D levels. My GP recommended supplements because Northern climates do not have sunshine levels to manufacture Vit D in quantity. And food has in many cases does not contain much Vitamin D.
I then logged on to various websites to find out the benefits and side effects of various foods.
It was a staggering experience. So shocking I started making sure that were possible we buy organic. My main websites I go to are Harvard medical school, Mayo clinic, NHS, Cleveland clinic, Health line, web MD. If you punch the name of a food in you can access benefits and side effects. I would emphasize I AM NOT ON ANY MEDICATION. I WOULD ALSO SAY ALWAYS DISCUSS DIET WITH MEDICS IF YOU CHANGE ANYTHING. I only take Vit D in supplement form.
I realise it would probably be a miracle if my diet makes a difference. But when I realised that MY situation was hopeless as I read on my GP health record that I was at very high risk of cellular mutations. So as Dylan Thomas wrote Do not go gentle into that good night . That’s my mantra. I apologise if my comments on my own personal diet have caused any problems. As
my foods are mainly fruit and veg off the supermarket shelves. Strangely I have never seen any health warnings on fruit and veg or spices although spices can have serious side effects in large doses.
In fact the NHS for years has recommended five a day. JUST KEEP ASKING YOUR GP QUESTIONS if you change your diet.
Rightly or wrongly I would suggest asking your doctor for a Vit D level test. I did and my levels are now satisfactory. Our summer has been dreadful. And vit D relies on the SUN.
Very best wishes to all.
Unclejack.
Oh @Unclejack thanks for the clarification, I am on Vit D for my osteoporosis.
Personally, and it is personally, I do not search the internet, I haven’t got time, I just go by what my medical team advice as they know my whole health history.
I was given a life expectancy of 5-10 yrs and 20 yrs later I am still here.
The main thing in my book is that we look after ourselves. xx
@Erica
Hi Erica you are quite right, I have a addiction to medical sites. I suppose it’s searching for a miracle! Had my routine blood test last week have telephone appointment Friday to discuss the results. Already beginning to sweat! Chrissy D has Chronic myelomonocytic leukaemia (CMML) and has fought it for many years like yourself with Chronic lymphocytic leukaemia (CLL). What amazes me is the many different types of leukemia and blood cancer. I wager there are thousands of people who don’t have symptoms or regular blood tests blissfully unaware they have blood cancer. I am terrified of these descriptions and prefer to call it bone marrow failure!
Best wishes unclejack
Yes, @Unclejack I still get all fluttery and anxious before all tests, results and appointments to.
I believe there are over 130 blood cancers.
Blood Cancer UK and other blood cancer charities are really trying to raise awareness of the symptoms out there in the medical world and with the public.
Please do let us know how you get on Friday.
Look after yourself xx
Hi @Matilda I was diagnosed 20 yrs ago and I still get slightly anxious before and during tests, results and appointments, I think it is natural, however I have found it subsides a bit over time.
Waiting is horrible
Our forum is a good place to support each other while we are waiting.
I find my results do fluctuate and I am guided by whoever ordered the tests.
I try to divert my mind by doing nice things etc.
I think many of us are impatient patients.
Be kind and look after yourself
