Hi, I was diagnosed just before Christmas, have been told I’m low risk but blood platelets are still going down. Has anybody changed their diet to try and help boost platelets since diagnosis. Also I very often have a wobbly and unsteady feeling, does anybody else have this. I’m still overwhelmed by the diagnosis and all the things I’ve been reading. Thanks
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Hello @Cati
Welcome to the forum, and thank you for taking time to reach out.
I’m sorry to learn of your diagnosis, and understand that you may be feeling somewhat overwhelmed with everything. Please be assured you are not alone, there are lots of people out there, many of whom visit the forum, and I’m confident you will find the forum very supportive.
I am a Chronic lymphocytic leukaemia (CLL) patient, so not exactly the same as you, but diet has been a consideration.
Everyone is different, and I am not offering you any medical advice, so please always refer to your medical experts, but my experience has been one where I was advised to focus on who wheat, whole grain diet with lots of fresh fruit and vegetables. This coupled with exercise and a good sleep pattern, and I do feel it is having a positive impact, but again that’s just me, and everyone is different.
You may find our page Eating well with blood cancer | Blood Cancer UK helpful
Don’t forget you can always speak confidentially with our support services team for information and support 0808 2080 888
Take good care of yourself
Do feel free to keep in touch a let us know how you get on
Kind regards
Mike
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I can see @GenesisDevice has given some great advice.
Of course you feel overwhelmed. It’s a lot to process and it will take time. Diagnosis and the weeks that follow can be tough. I know my emotions were all over the place.
I hope the forum is supportive space for you. We are a great bunch and always here for each other.
I’m sure others will be able to share their experiences. Make sure you keep a record of how you are feeling as it’s always good to share with your consultant.
It can be scary reading up on things. Just make sure it’s reputable sites and try to avoid Google!
I look forward to hearing more from you 
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Hi Caty,
I saw in another thread here that @Unclejack had some very positive results with dietary changes and his Chronic myelomonocytic leukaemia (CMML), I was curious also to learn from him what they might have been, if he’s happy to share 
Kev
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How do I find @unclejack s post please
Hi Cati, and kev.
Apologies for not answering before, I have been a Chronic myelomonocytic leukaemia (CMML) patient since early 2022 diagnosed early 2023 via bone marrow biopsy. Firstly at time of diagnosis I was told my prognosis was probably 8 months to 24 months as that was the average. The clinic took another blood test which was the worst of all my blood tests! I had a very low neutrophils and was very vulnerable to sepsis.Also my platelets had dropped to around 40. Monocytes were around 220. Anyway I was told only palliative care was available when needed. At age 72 I was to old for a Stem cell transplant as the treatment can be stressful but if successful can cure Chronic myelomonocytic leukaemia (CMML). So it seemed I was looking down the barrel of a gun! I joined the forum full of depression and fear. Here I came across a fantastic group of people who quickly banished my depression and restored optimism. Erica explained she had suffered with another blood cancer for many years, then Chrissie D explained she had suffered Chronic myelomonocytic leukaemia (CMML) for about 17 years possibly longer. Both still on watch and wait.
It was then I started to research possible options that might help. Diet seemed a logical response. I firstly say this the only supplement I take is VIT D3 consulted G.P.who organised a test and then recommended Vitamin D3 supplement.Firstly always consult clinicians before embarking on dietary changes. Some foods can be dangerous especially if you take medication. Luckily I am not on blood cancer medication yet. My diet is loosely based on the Mediterranean diet. I eat loads of blueberries, organic porridge, eggs, oily fish especially mackerel, green tea, very dark chocolate, grapes, raisins, chicken, cabbage, cheese usually Gouda, orange juice, extra virgin olive oil, greek yoghurt. I researched everything I eat for vitamin and mineral content. Especially anti inflammatory and antioxidant content. BUT ALWAYS CONSULT CLINICIANS DON’T TAKE CHANCES. FOODS HAVE VERY POWERFUL CHEMICALS IN THEM SOME CAN BE POISONOUS! Anyway at present my full blood count is quite stable, hopefully the monocytes will stabilise. Dr. Dan Wiseman of the Christy hospital announced a major Chronic myelomonocytic leukaemia (CMML) treatment breakthrough just before Christmas god bless him. I googled Chronic myelomonocytic leukaemia (CMML) research a few days ago and there seems to be a plethora of trials ongoing that could make a huge difference to Chronic myelomonocytic leukaemia (CMML) treatment eventually. Anyway hope my answers are helpful. But I am making no recommendations haematology and clinicians are the only people who have the knowledge and expertise to advise on diet.
Wishing you all the very best Uncle Jack.
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@Unclejack has given a very good account of his approach to optimising his Chronic myelomonocytic leukaemia (CMML) outcomes. Even though we know that these blood cancers are caused by faulty processes within our bone marrow, surely there is no harm in trying to give our bodies the best chance to deal with the disease?
I have had Chronic myelomonocytic leukaemia (CMML) since 2008 and was very depressed to learn at that time that median survival was expected to be 12-18 months! A lot has changed since then but I have been lucky enough not to need any treatment and my disease has remained stable. Now honestly I have no evidence for this but, like @Unclejack I have always eaten a Mediterranean diet, using whole grain foods, mainly vegetarian with organic fruit and veg from our allotment, but with occasional fish, so I do wonder if that has contributed or is just luck! I’m not prepared to take the risk of eating junk!
@Cati there is another thread on Chronic myelomonocytic leukaemia (CMML) that you might want to dive into. Lots of support and helpful information. I’ll make a post in there to get you into it. Haven’t experienced the wobbliness you mention but maybe you have low red cells and are getting fatigued? Ask your haematology doctor about it?
All best wishes
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Hi, thank you so much for this I really do appreciate it . Your diet sounds very similar to mine basic Mediterranean plus nuts and seeds, blueberries and dark chocolate. I have alo started taking vit.D supplement and papaya leaf, dandelion root, and modified citrus pectin. My last bloods showed that although platelets down to 42 others were stable but as enhanced diet has only just kicked in since Christmas really it needs time to give it a go. It’s really good to be part of this group now and find people who really understand. Thank you
Hi
Many thanks for your email, really appreciate, will have a look at the forum again
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