Hi @Sisi That’s really good news that your husbands bloods are still stable, long may they stay this way.
2 Likes
Thankyou @Lyndam for your message & kind words 
1 Like
Hi @Sisi @Lyndam @Logsie @Unclejack @CathyP @Rick @Erica
Just a quick update to say that amazingly, my full blood count test results came back the same as usual! I was so surprised given how I’m clearly not absorbing many nutrients from food going straight through and still losing weight!
I have an Addenbrookes appointment on 11th and a gastroenterology appointment at local hospital on 20th. I cannot access the CT scan report on Patients Know Best until 27 November (over a month after it was done!
) and I’ve had to submit yet another sample to be reviewed! I’m going to ask if I can be referred by haematology at Addenbrookes for an additional opinion there as I don’t have a huge amount of confidence in local hospital -considering this is the 4th time in 7 years that I’ve been to that department , had all manner of tests and just told I have IBS and basically go and get on with it! 
I do wonder if my very enlarged spleen is having any impact on my other digestive organs but nobody seems interested in pursuing that and presumably would have shown up on CT scan? Another mystery to solve! 
3 Likes
Hi @ChrissyD So pleased to hear your blood tests results are stable! 
I hope the appointments go well & you can get a bit more clarity, in what must feel like forever that you’ve been on the search for what’s going on!!! 
I think the additional opinion sounds a very sensible idea. And was my first thought when I started reading your message. Yes, interesting re your thoughts on your enlarged spleen… 
Hope you’re having a nice Sunday?
Take care 
1 Like
Oh @ChrissyD what complex beings we are.
Also I have also found that there are some tests that I have had to wait a long time for the results when other times I don’t. I suppose it is what they are looking for. Personally I would like to get the results from a consultant and not an App first, although conversely I suppose it does mean I can get my questions for my consultations from the App results.
Your additional opinion, especially at the specialist Addenbrookes, sounds good to me.
I will be thinking of you on the 11th (my sister;s funeral) and the 20th (my son’s birthday).
Please do keep updating us and yes, waiting is the worst part.
Be very kind to yourself.
1 Like
Oh @Erica
Thanks as always for your kind thoughts. So sorry to hear about your sister. It must be so sad to lose a sibling.
I always like to read my results before I see the consultant/GP so I can research and prepare my questions in advance rather than be caught on the hop and then forget to ask the right questions! Also worry about possibly be given only the information they choose to impart! I think it’s absolutely wonderful now that we can see our own records!
1 Like
Hi @ChrissyD good that your blood test results have not changed. I agree with you wanting a 2nd opinion from the Addenbrooks gastroenterology team, as I cannot fault the care from Addenbrooks. I have a similar problem with food upsetting me, but not as bad as you seem to have. They did a colonoscopy and I was diagnosed with diverticular disease, so just careful with what I eat. Hope you soon get this sorted. Take care.
1 Like
Hi @Lyndam
Thanks Lynda. We’re both big fans of Addenbrookes aren’t we?! Not sure if my request will be doable but I remember I was referred there once before many years ago by the haematology dept for an umbilical hernia spotted on an ultrasound. So fingers crossed. 
Wonder what the waiting list will be though?
I’ve read that the older we get, the more likely that diverticula will be discovered on a colonoscopy! I’d like to think this illness was diverticular disease but I think it’s been too long-lasting for that, plus I haven’t had a temperature or other signs of infection? Glad to hear that your diverticulitis is managed by careful attention to what you eat and hope this prevents flare-ups. I know it can be very painful.
2 Likes
Hi @ChrissyD Yes we are fans of Addenbrooks. All my scans etc are mostly done there. I have been lucky with all my referrals as they have been no longer than a couple of weeks, even gastroenterology. And yes I have read that diverticular disease is more likely as we get older.
Hope they soon get you sorted.
Take care
2 Likes
Thanks @lyndam
That sounds very encouraging re the waiting times. Thanks so much. 
2 Likes
Hello everybody
I am new to this group as I have been diagnosed Chronic myelomonocytic leukaemia (CMML)1 last september. I am french canadian living in Asturias, Spain. I will be on the meeting tomorrow so don’t be surprised if you ear a ”strange accent”. See you soon………
4 Likes
Hello @Pierre
So lovely to hear that our little Chronic myelomonocytic leukaemia (CMML) support group is now going global! Though, as always, sorry to hear that you have had this diagnosis of Chronic myelomonocytic leukaemia (CMML). Was your diagnosis made in Spain or back in Canada? Hope you are being well cared for. There may be a chance to share experiences at the meeting tomorrow but I think most of it will be taken up by the presentation by Dr Wiseman. We’d welcome ideas from everybody about the sort of topics you’d like at the Chronic myelomonocytic leukaemia (CMML) meetings hosted by Leukaemia Care. Over the 17 years since my diagnosis, I’ve personally found a mixture of clinical information and sharing lived experience to be the way to get my head around having a rare disease.
Hope that works for you too. See you tomorrow.
Chrissy
2 Likes
Welcome @Pierre ! I’m supporting my husband who was diagnosed with Chronic myelomonocytic leukaemia (CMML) last Autumn. This group has been such a lifeline & so very supportive 
I’ll be tuning into the meeting with my husband tomorrow too. Best wishes
2 Likes
Welcome Pierre, I developed Chronic myelomonocytic leukaemia (CMML) nearly 4 years ago so far so good no major problems. This forum has been invaluable.
Best wishes uncle Jack.
Thanks all for the nice “welcome”. I will present my case a bit better.
I left Québec,Canada 17 years ago to join my wife in Switzerland, then we left to travel around the world for 6 years until the pandemia got us stocked in chilian Patagonia. Finally decided to move to Spain 3 years ago where we bought a house in a quiet green mountainous environment.
2 years later, the construction was over, I started to feel a bit week, some time slightly nauseus and night sweats. Decided to try the Spanish public health system.
First blood test:, some anemia and low iron. The iron supplements didn’t work so more test: negative, more test: negative, bone marrow biopsy: Chronic myelomonocytic leukaemia (CMML) 1.
Hemoglobine, platelets and leukocites are quite normal, Monocytes around 1 but over 10%. Marrow blast count 4.2%. Probably at an early stage. Symptoms have decrease in the last years, dificult to distinguish if I am sick or just getting older (I am 67). My biggest concerns are the mutations, especially ASXL1.
I have the chance to live with my wife and cats in a beautiful environment, great nature and a few good neighbours, practice tai-chi, hiking and enjoy gardening projects. We live remote but the hospital is 15 minutes away and up to now, very happy with the health care, I feel in good hands.
So good reasons to stay positive and to enjoy my life with my new situation. I will try to be nice with my new “friend” so my friend will be nice with me for many years.
I have learned from this group discussions in the last weeks and will try to stay in touch with the group in the future.
Saludos de España
1 Like
Welcome @Pierre to this wonderful forum. It has been so reassuring to know you’re not alone. I’m supporting my husband who has Chronic myelomonocytic leukaemia (CMML) 1, diagnosed in Feb 25. He too has the ASXL1 mutation among others. At present he has no symptoms and just active monitoring every 3 months. He is 55. I’ve certainly noticed he gets a lot more tired but like you say, could that just be getting older? Or as he works for himself, he does have a stressful work life. We have two children to get through university so can’t retire just yet! He’s struggled with knowing he has this and just carrying on living life. It’s alot to get your head around but he has now come to terms with it, just gets anxious every 3 months. Your life sounds lovely in Spain. Sounds like you’re keeping as healthy as you can and that’s all you can do. You will certainly have a good dose of vitamin D! I totally forgot to attend the zoom meeting today, only joining half way through but the information I heard particularly at the end, was so uplifting and promising. Did you manage to join this meeting? @ChrissyD is was lovely to see you! Hope everyone else is keeping well. Best wishes all x
1 Like
Hi @Pierre It sounds beautiful where you live. I live in south west London, so quite different to you! 
My husband also the ASXL1 mutation, I think it’s quite a common one with Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) . Hoping we can all stay stable & as healthy as possible 
Pleased to hear you are in good hands. Happy that you have found this group! Many best wishes to you & keep in touch
1 Like
@Logsie I was there at the zoom meeting with my husband too! Dan Wiseman’s info was soo encouraging wasn’t it?! 
Here’s to all the research him & his amazing team are doing! Best wishes xx
1 Like
Hi @Sisi @Logsie @Pierre @lyndam @Rick @CathyP
Great to see you all today. Logsie I don’t know your “real life” name so didn’t spot you coming in late! Glad you’ve found it encouraging though.
Now that Dan has a positive outcome from the AMMO trial (I was the patient representative on the Trial Steering Group Committee!), we just have to hope that the pharma company will want to present it to MHRA and NICE for approval and use on the NHS. Sadly, rare diseases like Chronic myelomonocytic leukaemia (CMML) are not cash cows for Big Pharma so if it’s not to their financial advantage, sometimes treatments don’t get into use! As with Luspatercept (which helps people with a particular mutation become transfusion-free). Available in US and Europe but not in UK!
Nick York sends round an email with a comprehensive summary of the meeting and links to resources so look out for that shortly.
All the best to you all.
Chrissy
2 Likes
Thanks @ChrissyD & all those at the meeting today 
It was very encouraging! And it was great to see such a good turn out. Crossing everything I have that the AMMO trial research can get approved As ever, Dan Wiseman was a real tonic. Best wishes all
1 Like