@Cati A huge welcome to the Chronic myelomonocytic leukaemia (CMML) family here! 
Hi ChrissyD
After a year of platelets going down regularly for 12monthsvi had a bone marrow biopsy last October and Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) diagnosed in November. We then bought various books and read loads on Dr Google as you do. I found Dr William Li to be very interesting and some of his views on diet made a lot of sense to me. We decided doing nothing was not an option so diet was definitely the way forward as it is the only thing I can control. Even after not being so good over Christmas my bloods this week were fairly stable except for the platelets that are still on their way down. I have looked at the Dr. Dan Wiseman video thank you and will definitely look at the 4 Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) meetings you mention. Meant to add no treatment or medications of any kind at the moment just regular 12 week blood tests. This is why I feel itās important upto focus on diet before I havevto start taking anything that the supplements might interfere with.
Thanks
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Hi Logsie
Thank you for your welcome, this group certainly seems very friendly and supportive , very pleased ive found you you all 
So pleased to hear your husband is having some success with 8ncreas8ng platelets. I have got papaya leaf capsules, what sort does your husband take and when does he take it please. I do drink green tea but mostly with ginger and/or with food as it often makes me feel a bit queasy
Thank you
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Hi @Unclejack
I see that a post of yours has been hidden. I recently had this issue too with as I had posted a link to some research which I hadnāt realised broke the community guidelines ! I found it difficult to find out what I had done wrong and how to put it right but Iād suggest you contact @Ceri_BloodCancerUK who was very helpful in pointing out what the issue was and how I could edit my post!
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Hi Chrissy
Just caught up with my post being hidden. A bit baffled. I have been asking questions as to why I am taking statins with a cholesterol level of 1.7 for months without getting any answers. Even my GP said my readings were the lowest sheād ever seen. She contacted haematology to ask if the statins should be reduced and the answer was no. I still take a 40 mg atorvastin. I didnāt realise that Google search A.I. overview were posting misinformation which could damage sufferers of Leukaemia. I am seriously considering contacting my local MP to discuss this matter. Perhaps if clinicians had explained why my cholesterol is so low Perhaps blood cancer UK could study the impact of our Chronic myelomonocytic leukaemia (CMML) and cholesterol? In this day and age I think most with a life threatening illness tries to find out information about the illness and developments in research. I realise that the internet is full of rubbish and misinformation but for Google to print misinformation on their A.I. overview site is beyond disgusting.
I actually believed the article and was very excited. After all my clinicians have not been able to clearly explain why I am on a dose of 40mg atorvastin with a 1.7 level.
Best wishes Unclejack.
Hi @Unclejack
Whilst I do not know the exact reason why your post was hidden, the guidelines say āPlease do not post anything that could be interpreted as medical advice, including but not limited to linking to unverified research studies.ā
Iāve also been looking at connections between cholesterol and leukaemias. There are quite a few research studies, one in particular from 2025, showing survival benefits for Chronic lymphocytic leukaemia (CLL) and Small lymphocytic lymphoma (SLL) patients who were taking statins.
The suggestions are that cholesterol is used as āfuelā for leukaemia cells but it would certainly be useful if there were more research into this! Especially in the light of todayās headlines that statins are even safer than first thought! So maybe you feel more relaxed about continuing taking them?
Out of interest my cholesterol is only 2.2 and Iām not on statins. My very low cholesterol levels precede my Chronic myelomonocytic leukaemia (CMML) by around 24 years so Iām guessing itās more due to my healthy diet/ innate cholesterol handling than any links with Chronic myelomonocytic leukaemia (CMML)?
Itās already been shown that some AI search results have given false information about some health conditions so we all have to be a bit cautious I guess?
Thank you for those kind words @ChrissyD and thank you for sharing a bit more context @Unclejack.
I wanted to take a moment to explain (broadly) some of the processes behind these sorts of decisions on the Forum.
When a thread or a post is hidden, it can happen for a number of reasons. Sometimes the automatic system or community members flag content that might need a second look, and sometimes we (the staff team) do it on something weāre unsure about or need clarification on until we can discuss things internally to make sure weāre making the right decision for both the individual poster and the wider community. Itās never done lightly, I can assure you.
This also seems like a good opportunity to talk about something weāre grappling with across the healthcare sector: the rise of AI-generated health information and the opportunities and risks it can pose. Just recently, The Guardian found that Googleās AI was giving dangerous advice about cancer treatment. This is why itās important not to act on or share information from AI summaries without discussing it with your healthcare team.
The Patient Information Forum has helpful guidance on navigating AI health information. Behind the scenes, weāre working on things like updating our Terms of Use to reflect this evolving landscape.
I hope this helps explain why posts sometimes need reviewing and why weāre cautious about AI-generated content on the Forum. Getting these decisions right matters more to us than getting them done quickly, as we value this community so very much.
Take care,
Ceri - Blood Cancer UK Support Services
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Thanks @Ceri_BloodCancerUK . Very helpful.
Iām finding your link to the Patient Information Forum is taking me to a Teams page ? Is this just me?
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Hi @ChrissyD, thatās very odd! Iāve tried re-adding it - would you mind testing it now? Thank you!
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Thanks @Ceri_BloodCancerUK . All ok now 
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Hi Chrissy, excellent reply, and I will certainly apologise to Google A.I . overview for my earlier comment today. I have trawled through articles that SOME research from reputable organisations have highlighted a link that Leukaemia can use cholesterol as a fuel for proliferation of Leukaemia cells. So the A.I. description on Google search had accuracy in that respect. My comment was totally concerning my own experience with very low cholesterol for which I couldnāt get any info from my clinicians. And when my GP said that was the lowest figure she had ever seen I was determined to get more info. I never advised anyone to take ANY medication. Only last week when asked about diet and the food I eat I made it clear diet should always in my view be discussed with clinicians especially if medication is being taken. Seems talking about ones own experiences is against the rules. What really has annoyed me that I was basically told off for repeating a article which was basically accurate in the assumption that cholesterol could fuel leukemia progression. I have never liked taking statins or any other medication unless it is explained why it is necessary. When CLINICIANS cannot fathom whatās going on that makes the situation even more confusing. At no time in the comment I made about the Google A. I. article did I offer any advice on actually consuming statins only that some research suggested that leukemia cells use cholesterol as fuel. And that research perhaps explained why I was by prescribed statins. And I am happy to carry on with statins as prescribed. I was furious that initially I had been accused of spreading misinformation when now I know that my comment and the Google A.I. explanation was based on some accurate research . The reason I have commented was to try and find out what other sufferers are experiencing and what they know about future developments etc. Only recently I found out that chillblains had a connection to Chronic myelomonocytic leukaemia (CMML) and my clinic nurse hadnāt heard of that or the clinician at the urgent care centre. I genuinely thought that some of my experiences may be helpful to other sufferers. Once again I apologise to Google A.I. for being led to believe that their article was inaccurate and basically misinformation I suspect that being a ordinary person with no medical qualifications some believe I should sit back except my fate and just shut up and stop researching many reputable medical sites and finding accurate information that they now little about. I am just trying to live as long as possible. I try and discuss everything that seems relevant to my experience and indirectly may also help others. Great thanks to Chrissy D and others who over the last few years have given me great support when things looked so bleak. I think itās time to sign off seems I ruffle to many feathers. I hope all sufferers of any type of blood cancer finds great treatment and I think Dr. Dan and his research colleagues are really going to make a massive difference to Chronic myelomonocytic leukaemia (CMML) treatment and longevity. I will keep an eye on the forum and see what is happening from time to time .For the time being signing off
Best wishes to all Unclejack.
Oh @Unclejack I have noticed AI is suddenly flooding social media and I find it scary.
I, for one, want to know how you are getting on, please donāt be a stranger and take loads of special care of yourself.
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Hi @Unclejack please donāt sign of the forum sending posts as we have become a community helping each other. I wondered where your post had gone as I was going to send a reply. One minute it was there and the next gone. You give some very good support on here. Take care and keep posting.
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Hello @Unclejack
Iāve never said hello before, but I always look out for your posts and find them very helpful. We think the same way about a lot of things including the importance of the gut biome! You always think about things, look to your own experience and dont take every bit of medical advice as sacrosanct. I think that adds a good healthy balance to our discussions, not to be suspicious or aggressive but always curious and questioning. I would be extremely sad if there was no more UncleJack around this site, it would be like Autumn without leaves!
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@Unclejack Like the others have said, please keep posting, youāre a really important part of our forum family & Iāve felt very supported by you. Best wishes
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@Ceri_BloodCancerUK Thank you for sharing the Patient Information Forum link, really useful 
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Hi @Unclejack @Sisi @Erica @Logsie @Leigh65 @Lyndam
Uncle Jack. I think this shows youāve got a lot of support so stick around, kid!
I spent around 3 years trawling the Interweb back in 2008 -desperate for an answer as to why the first sign of my leukaemia (not diagnosed at the time!) was both my lungs filling with fluid and fluid in my abdomen (I now know these are called pleural effusion and ascites). Neither a consultant haematologist nor 2 professors could explain it, despite my constant asking! When I eventually found the research, it correctly described these as serous effusions and are a known but rare symptom of Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) ā kicking offā. I wrote to all 3 clinicians sharing the research links and none of them even acknowledged it! Which goes to show that a curious and intelligent patient can sometimes find things that experts do not know about!
Nobody is more interested in their own health than the person affected and I feel that AI, with safeguards and critical thinking by the user, may prove to be a useful tool to enable more collaboration and discussion between patients and doctors. It wonāt happen overnight though!
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@ChrissyD Yes interesting times with regard to AI.
Iāve found it personally a great tool for me / us since our Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML))) journey began. And even found myself using it alongside the vascular consultant once, whilst discussing my husbands results for a drug they were testing!
It was an interesting consultation!
Happy weekend to all
@Unclejack I echo what everyone has said already. You were the first person I really connected with on this forum and could really relate to with regards what my husband was/is going through. I really hope you donāt leave this forum and continue posting helpful, interesting g and informative posts, which I for one get so much from and it allows you to share your thoughts and findings. Like we all sayā¦this forum is a great support and comfort.
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