What are peoples views and experiences with a diagnosis of Chronic myelomonocytic leukaemia (CMML) stage 0 and drinking dandelion root tea?
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Hi @Logsie welcome to our forum, a good question, but perhaps one for your medical team or a nutritionist via your medical team or GP surgery who know you and your medical history. It is the same as we would say about any dietary changes.
I look forward to hearing more about you.
Look after yourself and please do keep posting.
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Hi @Logsie.
So sorry to hear of your diagnosis of Chronic myelomonocytic leukaemia (CMML). Is this a recent thing? Do feel comfortable to share your experiences here. In fact, the category of Chronic myelomonocytic leukaemia (CMML)-0 has now been superseded and there are now only 2 types Chronic myelomonocytic leukaemia (CMML)-1 and Chronic myelomonocytic leukaemia (CMML)-2. And these are not “stages” in the sense that some other solid tumour cancers have - rather they are classifications of seriousness at diagnosis according to how many blasts you have in your bone marrow. Maybe your clinical team has not caught up with the 2022 re-classification yet?! 
Erica speaks wisely and the Ts and Cs of coming onto this Forum ask “Please do not post anything that could be interpreted as medical advice, including but not limited to linking to unverified research studies.” So none of us should be sharing info about any supplements we may have tried as otherwise it is all a bit “snake-oily”!
When diagnosed with a difficult and largely untreatable disease such as Chronic myelomonocytic leukaemia (CMML), it is very tempting to look for various herbal/alternative medicines but, sadly, there is little, if any, research done into the effectiveness of these substances, so it is quite likely that you will be wasting your money - though hopefully not causing yourself any worsening of disease?
I have had Chronic myelomonocytic leukaemia (CMML) (was Chronic myelomonocytic leukaemia (CMML)-0, now Chronic myelomonocytic leukaemia (CMML)-1!) for coming up 17 years and, despite engaging on many of these chat forums and being a very proactive supporter of people with Chronic myelomonocytic leukaemia (CMML) for 15 years in another charity, I have never yet heard of any miracle herbal or other kind of cure! believe me, if there were I think we would all have heard of it by now!
If you would like more information on Chronic myelomonocytic leukaemia (CMML), please take a look at this video by Dr Dan Wiseman from Manchester Christie Hospital who is pretty much the UK expert on Chronic myelomonocytic leukaemia (CMML). https://www.youtube.com/watch?v=1EpN9TwG-C8
There is also a meeting organised by Leukaemia Care on 27th February with a speaker from Dr Wiseman’s team. Annoyingly, the LC website has been down for a couple of hours but if you search this Forum there is a thread started by Sisi and near the end I have posted the details. Otherwise, when it’s back, go to the Leukaemia Care website and check out their meetings/ support pages
https://www.leukaemiacare.org.uk/
All best wishes
Chrissy
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@Logsie
Hi logsie
Just read your post. I to have Chronic myelomonocytic leukaemia (CMML) and are quite well at the minute. I think the best advice I could give you is try and persuade your doctors to carry out a vitD test. When I was first diagnosed my G.P. tested me for Vit D levels and they were not good. Supplements were advised and my haematologist carried out another vit D test a few months later and my levels were optimal. Most believe VitD is mainly for bone health but it is also vital for the immune system.
Unfortunately recently G.P.s have been instructed not to test Vit D levels which I think is a public scandal. Because of lack of sun our bodies in northern climbs cannot produce enough vit D. Try and persuade your G.P. or consultant to test Vit D levels you may well be ok but it’s worth finding out.
Keep posting,not a lot of info about Chronic myelomonocytic leukaemia (CMML) so it’s great you have found this forum.
Best wishes unclejack
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Thanks all for your replies offering great advice. It’s my husband who has been diagnosed with Chronic myelomonocytic leukaemia (CMML) 0. He is 55 next week so young to be with this disease. His BMB was quite vague with words like ‘suggestive’ and ‘possibly’ etc so it does make us wonder if this is in fact a correct diagnosis? My husband has no symptoms and this was only found out through a routine blood test. We have been in touch with Kings and would like a second opinion with Dr Dan Wiseman who comes across very well. We are researching like crazy! Trying to get our heads around it all. It’s all been a huge shock.
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Hi @Logsie I was diagnosed with Chronic lymphocytic leukaemia (CLL) at the age of 53yrs old by routine tests by a gynaecologist. That was 21 yrs ago.
I can remember what shock I was in, it took me a while to get my head round it too.
You say you are both researching like crazy and if that is ‘googling’ be careful there is some perhaps unreliable information out there, it gave me 5-10 yrs life expectancy.
I hope your appointment comes through, please do let us know how you get on.
If your husband does not have any symptoms personally I would say go out and enjoy yourselves. That might sound weird to you, but it is what I would say now and in hindsight.
Really look after yourselves and take lots of care