I had no idea that there was anything wrong with me. I rarely seek medical advice but for some unknown reason I went to see my GP last August as I had so many bruises on my legs and some on my arms.(I had had these for many months). She gave me a blood test and telephoned me the next afternoon sounding very worried about me. Told me to cancel my upcoming holiday immediately. My platelets were at 27 and my nutrifls were also either very low or very high I can’t remember which). I had a bone marrow biopsy (a few weeks later) Then came the news that I have Chronic myelomonocytic leukaemia (CMML). My GP HAS ARRANGED FOR A COUPLE OF BLOOD TESTS SINCE THIS TIME AT THE SURGERY. bLOODS STILL VERY LOW (OR HIGH).That’s about it. So now about 6 months on I rang the hospital yesterday as I thought that they must have forgotten about me.The person I spoke to said they will send me an appointment for blood test. I said I thought that after 6 months I thought that they had forgotten about me. She answered “well that’s how it is these days”. So glad I phoned them as I really don’t think that I would ever hear from them again. I am a female aged 75. During my 1 phone call early on with the consultant he said that I am on WW. On my GPs advice I have cancelled 3 holidays ( we do love our hols!) I have also lot a lot of money because of this. Can anyone tell me if I am OK to travel to Spain Or Italy with Chronic myelomonocytic leukaemia (CMML)? I can not bear the thought of not being able to travel again. I feel OK in myself apart from being tired at times.Any advice or suggestions will be gratefully accepted.
Hi @maggiemoon I am so glad that you have found our forum.
My diagnosis was also a complete shock to me and it took me a long time to get my head round.
To cover your concerns.
Yes, if I do not get contacted within a reasonable time I do chase things up.
I realise the NHS is really struggling because of Covid times, sickness, holidays, strikes backlogs etc.
I have found since my diagnosis there is a lot of waiting around and not knowing.
Watch and wait (or active monitoring) is a system I have been on for 20 yrs are it is when we have tests at regular intervals to see progression or not of our conditions.
As for travel and holidays we cannot tell you as we are all unique complex beings and it is only your consultant or GP that can advise on this.
Also insurance can be expensive and there are sites who offer insurance for people with pre existing conditions. Blood Cancer UK has a deal with Staysure, but please do shop around and other people use other companies.
Perhaps write down all your questions to ask at your next appointment.
Look after yourself and please do keep posting.
@maggiemoon
I to was diagnosed with Chronic myelomonocytic leukaemia (CMML) last May. Still on watch and wait. My symptoms started a couple of weeks after my 3rd COVID vaccine in 2021. Took 18 months to get a diagnosis. Nobody seemed to know what the problem was. One of the GPs suspected vaccine side effects. But most doctors seem very wary of answering that question. Try Avanti insurance we found them very reasonable BUT we no longer go abroad so cannot give you a rough idea of cost. As an aside I am quite well but NOT impressed with the care I have received.
Best wishes and stay well
Unclejack.
Hi @maggiemoon
I’m so sorry to hear about your diagnosis and how abandoned you have felt by your local hospital. You did well to remind them! If you are on Watch and Wait and not needing any treatment, I am a little bit surprised that your GP has advised you not to travel? I’m not sure when your next appointment with your hospital haematologist is, but it would be worth asking the about this as they will probably have a better understanding of the implications for you than your GP. My own GPs more often than not put my diagnosis down on records and blood test forms as Chronic myeloid leukaemia instead of Chronic myelomonocytic leukaemia (CMML) and Chronic myeloid leukaemia is a completely different disease!! After nearly 16 years you’d have thought they would get it right by now! 
If you do decide on their advice that you do badly want to travel, make sure that you declare your Chronic myelomonocytic leukaemia (CMML) and look for insurance companies that specialise in pre-existing medical conditions. Insurers often change their underwriters so what works for some people one year may not work the following year so you’ll just need to shop around!
How are you feeling now in yourself? It’s quite hard to be diagnosed with such a rare disease (only 650 people diagnosed with Chronic myelomonocytic leukaemia (CMML) each year!) and support is thin on the ground with people being spread over several charities, meaning only a few in each. I have Chronic myelomonocytic leukaemia (CMML) and am setting up a buddy/support group within my charity so that we can meet others with the same disease. Emotionally, it can feel a lonely place.
Hope you are doing ok and that you don’t need to keep chasing your hospital for your monitoring appointments. If you are not satisfied with the care you are receiving, are you aware that there are specialists in Chronic myelomonocytic leukaemia (CMML) who might be approached for an additional opinion? I don’t know where you live but Dr Dan Wiseman at the Christie in Manchester is a real expert in Chronic myelomonocytic leukaemia (CMML).
Let us know how you are getting on
Best wishes
Chrissy
@ChrissyD
Hi Chrissy
Great to see you posting, as you say we are a rarity with Chronic myelomonocytic leukaemia (CMML)! As for myself I am still searching for every bit of info I can find. I had the best blood test for a couple of years just before last Christmas. Managed to see the full test report on my GPs test results section on the NHS app. Very pleased. When I was diagnosed May 2023 I had 10 abnormal readings, last Christmas test I had four abnormal readings.
I speak to the consultant on Friday to discuss my latest test. I am no longer low on neutrophils , still have Thrombocytopenia and monocytes are higher. Platelets are stable at 80,000. As usual dreading the Telephone appointment.
Really pleased to read your comments hope you are well and stay that way. Your journey of many years boosts my morale greatly and I guess all who read your posts. My neighbour had Lymphoma starting at the age of 56 he retired straight away thinking it was game over. After many years of treatment and a good quality of life he passed away at 88 years of age. So there is always hope!
Very best wishes
Unclejack.
Hi @Unclejack
So great to hear that your blood counts are improving and a bit more stable. And a lovely story about your neighbour!! When I was diagnosed at 58, the median survival for Chronic myelomonocytic leukaemia (CMML) given on a leaflet from Leukaemia and Lymphoma society was 12-18 months and I knew I’d already had it but undiagnosed for about 5 years. I thought I wouldn’t see my 60th birthday and was in a right old state about that! Goes to show you shouldn’t believe everything you read!
When I queried him about my platelets when they were 80, a Prof at Bart’s said very nonchalantly that I could have a hip replacement if they were 80! Sadly I didn’t need one!! 
Hope your telephone appointment goes ok on Friday. The NHS app is brilliant isn’t it?
Take care
Chris
@ChrissyD @Erica
Been reading a article in a American thrombocytopenia support group that platelet levels and production can be subdued by cows milk. Just started using oatmeal milk. Not quite as nice as dairy milk but quite palatable.
After Fridays blood test result thought I would try it.
Best wishes
Unclejack.
Hi @Unclejack
It would be interesting to see the research basis for that. We’ve swapped to plant milks - mainly out of consideration for cows - but vegan cheese is foul so I’m afraid we do still eat cheese as for us vegetarians it’s the go-to protein! I can’t say swapping to plant milks has made any difference to my platelets though. Your one-man research project might be interesting! 
Chrissy
Sorry to jump in @ChrissyD and @Unclejack but I saw mention of plant-based foods, which I have experience of due to being vegan for many years. Plant-based milks and cheeses have improved a lot since I first went vegan in the 90s—in those days you were lucky to find soya milk in any supermarket, let alone a tasty type. Nowadays it’s much easier and there’s all these newer plant milks.
I’d say if you’ve found that milk, cheese, and other vegan foods are not quite as nice as dairy then keep trying different brands. The types of plants and recipes used can give really variable flavours and aren’t quite as uniform as dairy. Some have calcium and other nutrients added to match the health benefits of dairy. I tend to avoid any plant milks flavoured with vanilla.
Vegan cheese has always been a bit rubbish, but some brands are figuring out how to ferment like with dairy. Some people rave about Miyoko’s cheeses but I’m not a fan. Personally, I like Violife cheeses—try their feta, it’s great! Scheese used to be good too. Obviously, cheese is fatty so is best in small amounts anyway. If you’re making cheese sauces try using nutritional yeast.
As for milks, soya is healthiest and matches dairy milk’s nutrients better than others. I tend to prefer ‘full fat’ oat milk in coffees and hot foods as it curdles less than soya. Refrigerated plant milks tend to be tastier, whereas UHT types are thinner and blander.
And of course, vegan foods have no cholesterol so that’s one less thing to worry about. Have fun trying out all those lovely vegan foods that are now available!
Hi @Duncan and @Unclejack
Thanks for the info Duncan. Shopping for food now is for me a bit of a nightmare! Trying to balance out the relative health benefits along with animal welfare, environmental considerations, Fairtrade, food miles and now the avoidance of ultra-processed foods! Sadly many vegan foods are highly processed and far removed from real food! 
Fortunately, we have a large allotment, grow organically and are fairly self-sufficient year round in fruits and vegetables. Currently eating purple sprouting broccoli. 
Broad beans are already flowering and I put in the first row of first early new potatoes on Sunday. Only 90 days to wait!!
@ChrissyD @Duncan @Erica .
Morning folks. I saw the cows milk info on a American thrombocytopenia support group site.Immediately filled the fridge with oat based milk. Have used it on my porridge and it is quite palatable, and the dish is easier to wash after. Talking of porridge I found out a while ago that normal porridge in the UK and USA is sprayed with weedkiller at harvest to help it dry. This chemical is linked to Lymphoma and the manufacturer has been sued by farmers effected in the states.
I now only use organic oats steel cut.
Now I need to find out how oat milk is sourced.
Also some research suggests very dark chocolate 70 to 85 per cent cocoa melted into a cup to make a beverage 2 cups per day can have a beneficial effect on the death of leukemia cells. Similarly mango apparently can target leukemia cells. Never ate mango in my life but very nice if put into a cup and add boiling water to soften the strips. I also drink 3 to 4 cups of green tea and camomile tea per day. I consume loads of blueberries usually in porridge or full fat greek yogurt. Basically any food with evidence it strengthens the immune system. Have cut alcohol down to about a couple of glasses of red wine per week. Alcohol can subdue bone marrow especially if you drink excessively. I do take a large dose of vitamin D daily and drink a tablespoon of extra virgin olive oil morning and night. Cruciferous vegetables very beneficial (Brussels, cabbage, broccoli cauliflower etc) I do not touch any junk food takeaways etc. Pumpkin seeds about one ounce a day, walnuts and brazils another important good on the menu.
Platelets are low but my other cells are edging towards normal. No longer have neutropenia. Monocytes have improved a little, it’s just the platelets that are annoying at present. Sorry to go on about my diet but I’ll try any food if there is evidence to show benefits. Always check for possible side effects. But as I am on watch and wait taking no medication don’t think I’ll have a reaction. I have read that pomegranates, and papaya can increase platelet levels but pomegranates apparently can react with statins.
That’s very annoying. Even more annoying is the medics insist I keep taking 40 mg Atorvastin even though my cholesterol levels are down to 2. Both haematologist and GP advise this. I follow their instructions but I think this is a mistake. Just one more food checked out is mushrooms some types can also help.
That’s it folks.
Best wishes unclejack.
Oh @Unclejack and @Duncan You are going to completely despair of me and my diet I fear.
I just eat a ‘meat/fish and 2 -4 veg’ type of diet with a hot chocolate and ice cream in the evenings and some pudding/chocolate at weekends.
I’d never despair of you, dear @Erica! Besides it sounds like you eat a healthy Mediterranean-esque diet which are meant to be the best for longevity, cancers or not. We all need a treat now and then, hence my occasional post-hospital doughnuts!
I understand your predicament, @ChrissyD. It’s hard to pick the most ethical foods when some are grown so far away, and then organic and fair trade stuff tends to be more expensive if available at all. Shopping around various places for specific items is a bit of a rite of passage (and annoyance) for vegans as we tend not to be able to get all our favourite foods in one place. Well, unless you have great health food shops nearby.
One way around that for me when I lived in the UK was to eat seasonal foods, and to accept that if I didn’t eat foods grown elsewhere then my diet would have been more limited. For vegans our diets would not be so full of delicious, nutritious foods from far away—thinking of how my life would be incomplete without tofu, for example, which used to only be imported.
So true about vegan foods often being overly processed, but then all food is processed to make it safe to eat, like with pasteurising milk and and veggies being chemically washed before sale. You’re so fortunate to have the space and time to grow your own veggies, I’d love an allotment or garden. Imagine growing and making your own plant milks! I’ve made hazelnut milk before following a Native American recipe (who call them filberts) and that was tasty but thin. I prefer my milks thick and creamy like I remember it being in old-fashioned milk bottles!
And @Unclejack, you might be horrified by what else goes into growing and producing the foods we eat. If people can afford and access organic foods, they’re more tasty and nutritious in my experience, albeit less perfectly formed. Have you tried fresh mango fruit, they’re lush!
As I’m sure you know, crops grown with pesticides need thorough washing once brought home. I try to avoid non-organic fruit and veggies that are grown above ground if the skin is eaten too, like tomatoes and leafy stuff, due to the potentially carcinogenic pesticide residue. Root vegetables are less affected by pesticides, growing underground, so I don’t mind non-organic versions of those.
I happened to work on an organic farm in my 20s and saw how the adjacent field of a non-organic farm grew exactly the same crops but with much neater, less weedy appearance from all the pesticides. Where that farm abutted mine you could also see the crops on the edges of the organic fields were neater and less weedy due to the pesticides that got blown over. Still classed as organic though.
Haven’t read that about cocoa or mango affecting leukaemia cells. I’d be wary about getting cancer information on websites that aren’t run by experts. I’m thinking of random Facebook pages that can be set up by anyone. There’s so much nonsense out there from laypeople claiming they’ve found the next best thing for health issues, like when horse dewormers kept being recommended for COVID-19.
I happen to take that statin too, despite being vegan and thus not eating any cholesterol, as I apparently have a genetic predisposition to higher cholesterol. So I don’t mind taking a statin as I can’t lower my cholesterol intake any further, and statins have very few contraindications with other medicines or ailments.
Always check your research and adaptations to your diet and additions of herbal remedies with your doctors, I’d say! Some of them can affect our medicines. It sounds like eating healthier overall is doing you a lot of good, and I hope it continues!