@Erica It does make a difference , you’re right. Look after yourself too. Best wishes xx
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Hi @Sisi
You seem a very thoughtful and analytical person who likes to get as much information as you can - but I honestly hope I haven’t overdone it!
In case it isn’t obvious, there is a purple box to click on called Summary of results on the Chronic myelomonocytic leukaemia (CMML)201 trial which sets out the outcomes. It’s important to note that Azacitidine is not a cure so I’m not quite sure what the meaning of “gone away completely” means? Ideally there would have been a follow up to see how long lasting it was?
You’re doing a great job supporting your husband through this. Hope he suitably appreciates everything you’re doing and gets you a VERY nice Christmas present! 
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Hi @ChrissyD You certainly haven’t over done it at all! And I’m / we’re SO grateful of all the valid points you have raised. As I realise & appreciate how knowledgeable you have become.
Yes, I read through the Azacitadine trial report, thanks. Like you say it’s a pity that there hasn’t been any further update, 2010 seems like a long time ago!
I have inputted info into the CPS MOL calculator ( I think I had all the correct info ) and it’s come back with intermediate , although wasn’t sure about the NRAS mutation, as my husband has KRAS one, so I said no to that one. So he’s either intermediate 1 or 2…in my mind.
I checked back to the recent referral letter that Kingston Dr had sent to St George’s ( re transplant ) and it does actually say that his “Chronic myelomonocytic leukaemia (CMML) molecular scoring system tends to be intermediate “.
Also the Drs last paragraph is as follows: “However, the patient is very well cognisant the transplant might be deemed to be a high-risk venture and we would be very happy if his care is repatriated back to Kingston if he is deemed alible for the same where we will consider hypomethylation with Azacitidine more so because of the two bad molecular players”
So in conclusion, I think the consideration of Azacitadine is due to the high risk mutations he has? We will definitely be going into the January appt with LOTS of questions…they are going to love me! 
I also guess, that if we want an opinion from Dr Wiseman, this is something that we should discuss & ask for at our next appt, via Kingston hospital?
My husband is REALLY appreciative & knows how much I like to be ‘informed’. He says Christmas presents are all sorted! 
He’s been quite emotional recently…which isn’t surprising but he’s an emotional ‘bunny’ anyway. I often find him crying whilst watching The Repair Shop!
Thank you again for all your help…you really are a massive support xxx
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Hi @Sisi
Yes the trial was quite a while ago but haven’t heard of anything more recent. I’m afraid Chronic myelomonocytic leukaemia (CMML) clinical trials are few and far between. As I’ve said before, it’s because the disease is so rare it makes finding participants in any decent numbers quite tricky. And frankly, pharma companies aren’t keen to invest a lot of funding in trialling a drug which might only be given to a few people so not likely to be a cash cow for them!
Dan Wiseman has been heading up a trial investigating an oral version of decitabine, a drug similar to Azacitidine. The trial is nearing its conclusion and no longer recruiting but it did achieve a decent number of participants -not all with Chronic myelomonocytic leukaemia (CMML). I’m on the Trial Steering Group and might be able to report back as soon as results are published.
It’s useful to know your husband’s graded as Intermediate from the CPSS-Mol. You were right that KRAS is not one of the “suspect” mutations whereas NRAS is! These mutations are interesting to know about in some ways -though as yet that knowledge hasn’t translated into specific treatments.
Out of interest, I had genetic sequencing (NGS) performed for the first time in 2019. It was not available until then and my Chronic myelomonocytic leukaemia (CMML) dates from 2008! The mutation found in 2019 was just KRAS. Since we don’t know if it’s been there all the time or if it’s been slowly developing over the years, it’s hard to say whether it’s been of any significance -for good or ill! My prof at Addenbrookes says there’s nothing in the literature ! In the subsequent several NGS samples analyses, the “amount” of KRAS- affected cells has remained stable at around 40% and I’ve just sent off another sample so should get results fairly soon. More recently, they
have discovered a KIT mutation (likely pathogenic!) and 2 more of uncertain significance -CUX1 and PPM1MD
.All very interesting but, as I say, no medical applications thus far!
You can also get an additional opinion referral via your GP. Doesn’t have to be your hospital consultant.
As in my case, since it’s uncertain how long your husband has had these “bad molecular players”, for all anybody knows he may have had the Chronic myelomonocytic leukaemia (CMML) for a while anyway? I’m sure I had mine at least 5 years before it kicked off as I had recurrent cases of cellulitis on my legs that I kept putting down to spider/insect bites!! But because I never had any blood tests nothing was picked up?
Oh the Repair Shop, that’s a real tear jerker. It’s sweet that it moves your husband. We enjoyed the French and Sanders spoof of it too!! My own trigger programme is Call the Midwife so I’ll have to get the tissues out for the Christmas Special! I was very involved supporting new mothers with the National Childbirth Trust for 18 years so seeing a newborn always gets to me! 
Glad that your husband is so appreciative and that you’ll be rewarded! We never know what to get each other these days, being the age we are and not materialistic, we have everything we need. 
More present wrapping to do and a very challenging cryptic crossword in the Guardian today so we’ll have our brains fried for next couple of days!
Xx
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@ChrissyD Thanks Chrissy & yes please if you’re able to report back with any feedback from the Ammo trail, when the information becomes available. Thankyou for forward the info about it , it will refresh my memory from the online discussion.
And yes, very interesting about your genetic sequencing. I still can’t quite believe you were diagnosed in 2008! Fingers crossed for the other sample results for you 
To be honest, I didn’t even realise we all have gene mutations, until my husband was diagnosed! 
I’ve certainly had a crash course in biology recently or maybe I just wasn’t paying attention at school!
Thanks for the advice re referral / GP. I think in the first instance we might wait till 10th Jan ( next hospital appt) to discuss this, as sadly not sure if we’d get a GP appointment before then anyhow! But that’s good to know.
And yes I wonder how long your Chronic myelomonocytic leukaemia (CMML) had been brewing. Cellulitis sounded horrible for you! 
In my husbands case he’s been on statins for at least 6 years & has been having yearly routine blood tests, so I’m guessing it might be relatively new or at least in the last year ? As his elevated monocytes was flagged up March / May of this year. Over the last few weeks I’ve often been wondering about people that probably have it but sadly don’t know yet! Anyhow…I’m waffling now
That French & Saunders sketch of the Repair Show was hilarious wasn’t it
Thanks again Chrissy, you really are a star 
Best wishes to you & your family for Christmas & good luck with that crossword!
P.S. I’ve just made 36 mince pies!
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Hi @Sisi and @ChrissyD If you would like to talk to the Blood Cancer UK Trial Team they will be available after the holiday period on 0808 2080 888
Oh, a mince pie would just go down nicely !!
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@Erica Thankyou for this info, much appreciated. I’ll send some mince pies through the internet to you now! 
Merry Christmas to you & your loved ones & thankyou for all your support 
Best wishes xx
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Thank you for the scrummy mince pies @Sisi They have made my day.
A great big healthy, peaceful Christmas whizzing it’s way to you too.
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Hi @Sisi Has your husband had his January appointment yet? I can’t find the date in this long thread! 
Hope you had a good Christmas and wising all on this topic a healthy 2025.
Many lurgies about and A and E is overwhelmed - according to news reports. So keep yourselves to yourselves and stay well! My husband took to his bed with overwhelming fatigue just over a week ago so he was quarantined in a bedroom for 5 days with me taking food and drinks up and down the stairs! Good exercise! No other symptoms and Covid tests were
-ve so no idea what that was but I seem to have avoided it thank goodness! 
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Hi @ChrissyD A very Happy New Year to you!
Thank you for your message. I was only thinking of you yesterday. Hope your Christmas was a good one? So sorry to hear about your husband. I hope he’s back to his normal self now & you’ve been able to slacken off on your step count! And yes, lots of lurgies about.
Infact my husband is only just recovering from a cold. I seem, like you to have avoided it with just a few sniffles.
Our next hospital appt is tomorrow. Will keep you posted with any news. Interestingly, we had copy of the letter from the stem cell consultant we saw before Christmas. She confirmed that my husbands CPSS Mol score is intermediate 1.
She also says in the letter that the consideration of the Azacitadine treatment is due to the ASXL1 mutation he has. So….we are going in with lots of questions tomorrow! They wil love me! 
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Hi @Sisi
Forgive me if I’ve already mentioned this but I think it’s a tool that might help when you are discussing options tomorrow? I’ve mentioned it a few times on this forum but it may have been on threads before you joined? I do bang on about it a lot and admittedly the benefit of using it does depend heavily on how much information your clinician wishes to give you and how honest/self-aware they might be about gaps in their knowledge of clinical evidence?!
I’ve copied this from another post.
“I have read of something which NHS clinicians should be using as a tool to discuss with patients when starting or continuing with a drug treatment. The acronym is BRAN which stands for Benefits (what are the benefits of this medication?) R= Risks (what are the likely/possible risks/side effects? A= what are the alternatives? N=What if I do nothing? NHS England » How to use a decision support tool”
At the moment, all that is known is that your husband has a suspect mutation but nobody has any idea of (a) how long he has had it and (b)if (or when?) it will start to manifest itself in terms of symptoms of disease?
In my case, I also have a (lesser!) suspect mutation but it’s only been known about for 5 years and it hasn’t changed in frequency of occurrence, nor in terms of any difference in my health for the past 5 years since it was first tested for! If it’s been there the whole 16+ years, it clearly isn’t having much of an impact! But your husband’s one is specified as a risk factor in the CPSS -mol. Again, before starting any treatment, I’d be inclined to get an additional opinion from Dan Wiseman as he may have more data on impact of certain mutations? And evidence of efficacy of Aza) which I’ve already sent a link about).
The question I would ask, apart from the basic BRAN questions, is what evidence is there that Azacitidine would delay or alter the course of the disease, especially given that the disease is not currently affecting your husband’s quality of life?
You shouldn’t worry that asking questions won’t make you popular with your clinician! It’s your and your husband’s right to get full information about your husband’s health and ultimately it will be his decision to make.
Hope it goes well. 
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@ChrissyD Hi. Thank you so much for all of this. It’s really very much appreciated
No I wasn’t aware of the BRAN tool, so thank you for that. I will use / mention it tomorrow.
I would personally really appreciate Dan Wiseman’s opinion. I think my husband feels a little uncomfortable flagging this up. But I was explaining to him that Dr Wiseman is the most experienced in the UK with Chronic myelomonocytic leukaemia (CMML). And it’s not that I don’t trust our medical team but as this condition is not common, in my mind it’s vital that we our reassured that any treatment / management is the right step to take for him.
I don’t know how experienced Kingston are with Chronic myelomonocytic leukaemia (CMML) patients. Although the senior consultant does also work at Kings but I’m not sure again how experienced he is. So, lots of questions to ask. Thank you for making me / us more prepared & confident, which can be tricky when you haven’t been in this situation before!
You really are a guardian angel! 
I will keep you posted.
Best wishes
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@ChrissyD Hi Just wanted to update you from our hospital appt today.
We had a good discussion with the CNS & consultant at Kingston hospital. They were ready to go through the consent forms to start Azacitadine treatment for my husband.
So we spoke about the BRAN tool which they hadn’t really heard of specifically 
but did say they were part of the consent forms.
They couldn’t really answer our question regarding the evidence of Azacitidine delaying or altering the course of the disease. But just said the plan was to stabilise / normalise any blood counts. When asked, they did actually admit that they hadn’t had much experience of treating Chronic myelomonocytic leukaemia (CMML) patients!
We spoke about Dan Wiseman & how we would welcome an additional opinion from him, as Chronic myelomonocytic leukaemia (CMML) specialist, which they were very supportive of.
So, the next step is they are going to contact Dan Wiseman’s secretary, to try & get the ball rolling there. Obviously we ideally don’t want to be waiting too long, so if we can’t see him via NHS in the next few months then we discussed the possibility of perhaps seeing him privately? Not sure if he sees private patients?
We are also going to return back to Kingston hospital (waiting for appt v. soon ) & see the senior consultant haematologist ( as we didn’t today ) to discuss things further with him ( He also works at Kings but not sure if he’s actually part of the Heamotology team )
So we feel very positive with the next steps. Thank you again SO much for supporting us, it really is much appreciated. We will keep you posted with any news.
Hope you’re keeping out of the cold weather?
Best wishes xx
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Hi @Sisi that sounds a very positive appointment today and you and your husband did brilliantly.
I await any updates, really look after yourselves
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@Erica Thank you! It was positive indeed
And thank you for your continued support, it means a lot 
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That does indeed sound as though you have made good progress there today -especially as regards getting the additional opinion from Dan Wiseman. I think others on this Forum have had an additional opinion from him and I don’t recall that the wait was very long so fingers crossed that you hear soon and don’t have to go down the private route!
It’s so disappointing that a Shared Decision tool which appears to have had full NHS backing to be widely implemented isn’t currently used by clinicians! Nor does there appear to have been any training! Frustrating.
I did do a bit of a search and I could not find any of the consultants at Kingston working in a patient-facing setting in the clinical haematology team at Kings -though one is listed as a lecturer at Kings and Imperial. Assuming both their websites are up to date!
Are your husband’s platelets normal? And what are his white cell counts, neutrophil and monocyte counts? I am presuming-since he feels ok-that his Haemoglobin is normal? In which case, I don’t understand why they are saying that the Aza will “normalise” his blood counts if 2 out of 3 are already normal? If it is only the white cells that need normalising, I’m sure Dr Wiseman has mentioned another drug which would achieve this but with fewer side effects? Azacitidine usually lowers all cell counts -especially white cells and platelets, so the treatment actually increases risks of infection and bleeding.
Hope you hear something soon as for me it was always the waiting for the next appointment and blood test results which caused anxiety! With time and disease stability, I’ve now become very blasé about it but it wasn’t always so!
Yes keeping warm even though I’ve been asked to do 4 school runs this week and got soaked on Wednesday! Good exercise though and lovely to have individual chats with 2 granddaughters! 
Keep us in the loop. I am so happy to help and really appreciate your thanks. Xx
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@ChrissyD Hi Thank you for your message. And yes we feel very pleased at the progress to potentially see Dan Wiseman.
The senior Haematologist at Kingston, sounds like the Dr you found. I think he leads on Education at Kings & lectures at Imperial. We’ve now had confirmation of appt to see him also, next week Thursday, for further discussion. So will be asking him about the points you’ve raised re Azacitadine treatment, thank you. Although I was under the impression from watching Dan Wiseman’s presentation, that Azacitadine ( in those that respond ) reduces the white blood cell & not red blood cells or platelets so much?? But I may be wrong. I’m sure all will become clearer.
My husbands most recent blood test done ( at Bone marrow transplant appt 3 wks ago ) we haven’t got details of but was told platelets & haemoglobin were normal. Last blood test we have record of was at the end of October ‘24 & was: Hb 144, Platelets 310,white blood cell 11.9, Neutrophil 7.3, Lymphocytes 1.9, Monocytes 2.3
So I believe that white blood cell is slightly elevated, Neutrophils high side of normal & monocytes are elevated.
I’ll keep you posted with any updates.
Sounds like you’ve had a busy week with your granddaughters! 
Keep warm & wishing you a lovely weekend. Best wishes xx
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Hi @Sisi
In case you want to look at this before your husband’s next appointment, I found this very good summary about Azacitidine on the Cancer Research website. Lists potential side effects which does include lowering platelets and red cells. Of course, it is always the case that not everybody will experience side effects.
Brrrr. Cold today!
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@ChrissyD Thank you for sharing this info. Like you say a very good overview Absolutely freezing here today too! Although the garden looks beautiful & frosty Trying to summon the courage up to get wrapped up & go for a walk. I think my step count might be limited today! Take care xx
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Hi @Sisi and @ChrissyD I have found that there is more taken into account to diagnosis, treatments and treatment plans than just blood tests results.
The benefit is that we are all looked at as a unique individual with our own medical histories. We also might all react to treatments differently.
This is being honest on my experiences of listening to different haematologists over the years give presentations they can sometimes have their own opinions and have their own ways of working. There is no right or wrong, they are human.
It is like expert witnesses for either side in a court case
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