@Logsie
Hi logsie sent my results to Sisi by mistake!
Apologies to Sisi. Anyway here are my mutations result.
Previous cytogenics 46xy
High throughput sequencing ASXL1, VANX1 MUTATED,SRSF2 MUTATED, TET2 MUTATED, NO EVIDENCE OF PROGRESSION, CT SCAN NORMAL SPLEEN AND NO EVIDENCE OF LYMPHOPROLIFERATION
BEST WISHES UNCLEJACK
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@Unclejack That’s ok. I replied to you anyway! 
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@Unclejack @Sisi interesting that you have the ASXL1 and your husband does @Sisi. My husband has this mutation and I keep reading that it’s not a good one to have which puts the fear in me. But then Dr Wiseman seems to not be concerned by this so I’ll stick by his views! Hoping that my hubby just needs to be monitored. At the moment we are going crazy with healthy food suggestions. One person says milk is important another says it’s bad for platelets and the list goes on! He also found out today he has a double hernia. He’s going for the key hole surgery to sort it out so it’s something less to worry about. Thanks again for all your support. Hope you’re all doing ok x
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Hi @Logsie oh, I know people saying this, that and the other about healthy diets but perhaps be guided by your husbands specialist nurse or medical team.
Personally, and it is personally, I believe in a healthy balanced diet, with the odd treats.
As you say one person contradicts another.
I hope your husbands keyhole surgery and recovery for his double hernia goes OK.
Please both of you look after yourselves
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Hi @Logsie Good to hear from you 
And yes interesting re the ASXL1 mutation. It scared me too at first! From what I’ve gleaned over the past few months, apparently it’s a common one with Chronic myelomonocytic leukaemia (CMML). So we’re not alone! Have you been able to have your chat with Dan Wiseman yet? Or any idea when?
Really interesting to hear your comments on diet suggestions, as this is an area I don’t know much about & didn’t get a chance to discuss with Dan Wiseman at our consultation. Our local hospital didn’t seem that forth coming when I asked them 
However I’m going to attend the Haematology Patient and Carers Congress in London next month. And I know there is a session on diet. So I will report back with any interesting information I can get!
So sorry to hear of your husbands hernia but at least that’s getting sorted & like you say, one less thing to worry about.
All ok with us thanks. Next blood tests are not till mid July, so we’re trying to keep busy, whilst my husband feels ok.
Best wishes to you & your hubby 
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@Logsie
Hi logsie
I see you are interested in food suggestions.
Be cautious and talk to your clinicians. I to have seen conflicting suggestions. I will tell you what I know and what I eat. Firstly I maintain Vit D levels, I am furious to be told that doctors are being told by NICE to only carry out Vit D tests if they suspect bone problems. Having a test is so important. Vit D is crucial support for the immune system. See if your GP or haemotologist will request Vit D test, my GP and haemotologist have requested tests for me and I am now pretty well optimal. The rest of my diet is loosely based on the Mediterranean diet. I AM NOT ON MEDICATION SO INTERACTIONS ARE NOT A PROBLEM AT THE MOMENT. My platelets are the problem for myself. i have read via a American thrombocytopenia group that milk can affect platelets and others say it boosts platelets. Alcohol is proven to suppress platelets. You really do need to discuss diet with experts some dangerous things out there! As an example I read pomegranate was very good for platelets then before I ate it I found it could react with statins! So that went in the bin! I don’t mind discussing my approach but I have NO MEDICAL OR NUTRITIONAL QUALIFICATIONS OR EXPERTISE. I AM NOT RecommendIng ANYTHING. Everything I eat myself especially new foods I use reputable medical websites to check for side effects and interactions. Mayo clinic, Cleveland clinic, Harvard medical school etc. Plus cancer or Leukaemia specialist clinics.
I am retired so have plenty of time to search for info. The reason I decided to study diets is on my day of diagnosis I was left in no doubt that prognosis was bleak (8 months to 24 months survival) only treatment stem cell transplant, at 74 to old. My symptoms started February 2022 so I have now passed the 3 year survival mark.
Even better due to intermittent night sweats I had a CT scan to check lymph nodes etc that revealed everything was normal (Hillar
nodes very slightly larger than normal) but of no concern. Spleen normal, cysts on kidney and liver cyst not a problem and very common. Only worry was that pesky kidney stone is still in position no doubt preparing to torture me if it decides to move (it’s been there for many years). Please please check foods out with clinicians if you add anything to your diet. There are dangerous things out there and in our situation we don’t need self inflicted problems.Best wishes unclejack.
@Logsie
Me again Logsie. Forgot to mention that the bone marrow test results they carried out were quite remarkable according to consultant. No progression and the word normal was appearing. So there you have it hope is not lost even after 3 years of this problem. I still have Chronic myelomonocytic leukaemia (CMML) but luckily it is having little effect up to now. Best wishes unclejack.
@Unclejack that’s really interesting to read and thankyou for sharing. My husband doesn’t take any medication. We try to follow the Mediterranean diet too and stay as healthy as possible. With your advice, he takes vit D. He also takes fish oil and papaya leaf extract. We go next week to see the haematologist for our first 3 monthly visit after having a blood test and abdominal scan. That’s interesting about the alcohol…something to work on! 
All we can do is try to remain as healthy as possible and exercise. Hubby currently sat in this gorgeous sunshine…getting extra vit D! 
x
@Logsie
Hi logsie
Very interesting your comment about Papya extract. I have read it does support platelets how does your husband find it, is it a liquid or in leaf form, can you tell me were to buy it? I also love mushrooms and if they are exposed to the sun their Vit D content is dramatically increased it tells you on the container if that is the case. I buy mine from Lidl or Sainsbury’s chestnut mushrooms. They are grown in UV light. Now the mad scientists are trying to switch off the sun we need all the Vit D we can get.
Best wishes unclejack.
@Unclejack he gets papaya leaf extract capsules from Amazon. He’s been taking them since his platelets started looking abnormal before the diagnosis. Not sure if it’s helping but it could be? Mushrooms are great too…interesting about the sun. He also has mango, strawberries and an orange every day. Who knows if all this helps but it’s all healthy stuff so can’t do any harm! Take care x
Hi @Logsie @Unclejack @Sisi @Lyndam
Hope you are all enjoying this lovely weather! I’ve got my gardening mojo back and sowing seeds like no tomorrow!!
There’s been a lot of chat about nutrition and I’m sorry to say that I understand that medical students have minimal training in this and frankly most seem quite disinterested in discussing it! And when I watch medical programmes on the telly and look at the physical state of so many of the doctors and nurses and paramedics, I honestly wouldn’t be taking advice from them, shall we say?! 
There is an online meeting on nutrition coming up led by Myelodysplastic syndrome (MDS) UK. Here’s the link to join. You have to join Myelodysplastic syndrome (MDS) UK but it’s free!
There is also another interesting video on that website on lifestyle medicine which includes nutrition and exercise plus cutting out unhealthy habits like smoking and alcohol. Here’s the link for that
Hope it is useful.
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Hi @ChrissyD Thanks so much for sharing. Very useful indeed. My husbands a bit of a ‘foodie’ so he’s quite keen to find out more. I’m going to the HPCC25 next week in London, I don’t suppose you are too? Glad to hear you’re enjoying the weather & your garden. It’s scorchio here in west London 
not that I’m complaining ! 
So I’m currently trying to stay cool 
Best wishes xx P.S. Will register for the 20th May online meeting. Thanks 
Thanks @ChrissyD for those links. All makes interesting reads.
@Unclejack @Sisi went yesterday to see the consultant at our local hospital for my husbands first 3 monthly review. We were very nervous but the consultant was so calming and informative. Basically he told my husband to go and live his life. He’s young (55🤔) for this disease. He may well be affected by it in 15/20 years, or sooner or never! He was shocked that we are getting a second opinion at Kings although appreciated why we have done that, saying that Kings tend to push stem cell transplants which obviously is not needed right now if ever. He said the important thing is to keep healthy and fit and not obsess over it all. He also said that in a couple of years there will be new advanced treatment (he used to work at Kings). All really reassuring and feels like a weight lifted! An interesting point he said to remember, is that Chronic myelomonocytic leukaemia (CMML) uses the words leukaemia and cancer when infact it’s non malignant. It’s just those freaky words! We came home and had a drink in the garden! We are now going to take a step back from all the researching and relax abit. Wanted to share with you all and say thanks again for all your wonderful support. I will of course dip into this amazing forum as we get so much from it. Have a lovely long weekend folks x
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@Logsie Oh! This is such wonderful uplifting news! I’m so pleased to hear you had such a good appointment with your consultant today. Interesting to hear his opinion re Kings & stem cell transplant & very encouraging to hear about his thoughts on new treatments coming through. I’m not suprised that you feel like you’ve had a weight lifted! I just read your message out to my husband & it really lifted his spirits too. Thank you so much for sharing. And enjoy not feeling the need to research! Wishing you a great weekend. Very best wishes to you both & keep in touch. Take care 
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What a sensible consultant @Logsie go live the life you love and love the life you live (Rod Stewart)
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Love that @Erica ! 
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@Logsie
Very interesting. My conversations with my doctors have been somewhat different. The brochure I was given at diagnosis and the comments made to me left me in little doubt that although not terminal It was inevitable in the future. Only treatment stem cell transplant but at 74 to old. Up to now the only symptoms have been occasional night sweats recently. I have suspected that Chronic myelomonocytic leukaemia (CMML) is so rare that nobody is sure about progression or remission.
As for myself after my recent tests I could certainly accept that hopefully your consultant could be right. In fact my wife has said times that she believes my diagnosis is wrong. Being a pessimist I have expected my demise at every clinic appointment. Yet I feel well and if it wasn’t for the low platelets and fluctuating neutrophils I wouldn’t have a clue I was ill at all. Perhaps the blood tests need recalibrating! Penn medicine in the USA say many Chronic myelomonocytic leukaemia (CMML) patients live a totally normal life with little impact. So far that’s been my experience. I absolutely hate the word cancer and leukemia. I think we should call it a bone marrow malfunction of unknown origin! As I write the letter box rattled and junk male from a company called pure cremation fell on the floor. Well I intend I won’t need their services for a while yet unless the lord says otherwise. Great post, certainly gave me a morale boost. Please keep posting nice to hear good news. Best wishes unclejack and stay well.
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Hi @ Unclejack @Sisi @Lyndam @Logsie @Heidi_BloodCancerUK
Just reminding everybody about the Chronic myelomonocytic leukaemia (CMML) Meeting that Leukaemia Care are holding next week. 22nd May at 2pm. You need to register and I’m giving the link from the Myelodysplastic syndrome (MDS) UK website as it’s easier to navigate!
I think it’s going to be a mutual support meeting and it might be nice to put faces to names.
@Heidi_BloodCancerUK can you put up a general post somewhere?
Hope all well with you all?
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Although the link looks like it’s for the Feb25 meeting, when you click it takes you to this month’s meeting details and register button!
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@ChrissyD Hi Chrissy. Thanks for the reminder. Yes we’ll be there. All good thanks Hope all good with you too. Best wishes xx
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