Recent diagnosis CMML

Recent diagnosis
, ,
101

Hi @Lindy1 I will copy your concern to the Blood Cancer UK support services for you @BloodCancerUK-SupportTeam

2 Likes
102

Hi @Lindy1 I found that too initially. Like @Erica has said, I’m sure someone can advise you. I would but I probably wouldn’t explain it that well! :crazy_face: I don’t think it really matters where you post but I guess if you wanted to chat about something specific & with those with similar experiences, there are ‘categories’ on the forum where you can create a new message. I will leave it to the support team to advise you properly, as I’m already waffling! :grimacing: Take care x

2 Likes
103

Where is the best place on forum to see most recent posts

1 Like
104

Hi @Lindy1 It’s normally on the main Forum page. Next to each heading is the time when it was posted. Hope that helps. Best wishes

3 Likes
105

Hi @Sisi and all on this thread with Chronic myelomonocytic leukaemia (CMML).

Just to let you know that Leukaemia Care have organised 4 meetings for 2025 for people with Chronic myelomonocytic leukaemia (CMML). Hoorah! The first is 27th Feb and will be delivered by a member of Dr Dan Wiseman’s team at Manchester.

Here is the link to the meetings’ page on LC website. Scroll down to find Chronic myelomonocytic leukaemia (CMML). Once you register for one meeting you will get registered/notified for the rest of the year. It will be really helpful to meet in a group specifically for Chronic myelomonocytic leukaemia (CMML).

@Erica Do you know of a way to get this broadcast more widely -i.e.outside of this thread? Should I start a new topic?

Best wishes

Chrissy

3 Likes
106

@ChrissyD Hello! :slightly_smiling_face: And thanks so much for passing this information on. It’s in the diary :+1:

I sat in on the Myelodysplastic syndrome (MDS) zoom meeting this morning. I saw you were there but don’t think I had my screen on :crazy_face: ( I logged in on my phone & couldn’t see much! ) Altho not that you’d know what I look like! My real name is Simone :slightly_smiling_face: I wasn’t able to watch to the end but it was a really interesting presentation.
Hope all good with you? X

2 Likes
107

Hi @Sisi

Yeah. That was a great meeting today. Sorry you couldn’t get your video to work!
If only there were more clinicians/nurses as sensitive to our needs as Kirsty! I think the topic of Kirsty’s research is so interesting and I wish more research was done to look into the benefits of self-care/diet/lifestyle in terms of quality of life for people for whom treatment options are quite limited and not always very effective. We might have been put in a breakout room together! That would have been funny!

Maybe we’ll meet in the ether one day soon! :joy::joy:

Has your husband had any more blood tests? Just wondered if anything had changed since he recovered from his cold?

You might be pleased to hear that a man in our breakout group spoke very highly of his experience of getting an additional opinion from Dan Wiseman. He said in the 45 minutes with him he learned so much more about his disease and situation - far more than in all his previous consultations -one of which he described which was totally bizarre! :woman_facepalming:t2::joy:

Take care

3 Likes
108

@ChrissyD Yes, indeed! Wasn’t Kirsty amazing! Really interesting presentation. We’re very fortunate that my husband has a lovely CNS, who is very approachable. Altho I’m not sure yet how much specific knowledge she has re CMM.
I will definitely log into the meeting on 27th, via the computer, so will be on view!

We don’t know full results of last blood test. I can’t seem to access all the Heamotology info on line, just the biochemistry bits. But I’m planning on asking the CNS for the results before we see Dan Wiseman. So we have them for then to refer to. Fortunately my husband has been feeling good recently, so we’ve been keeping our selves busy.

That’s so interesting to hear of the gentleman that went to see Dan Wiseman, really encouraging like you say. Altho not so good regarding his other consultations! :face_with_diagonal_mouth: Thank you for sharing that information with me. Much appreciated.
Hope you’re keeping warm…it’s bloomin freezing in London!! :cold_face:
Take care x

2 Likes
109

Hi @ChrissyD a new topic sounds good to me.

110

Hi Simone @Sisi

Good to see your and your husband’s faces at the LC meeting today! Disappointed with the turnout but I hope those who attended got something out of it. It was quite a bit more clinical/medical than Dan Wiseman’s presentations so I hope people weren’t too bamboozled! Did you both find it useful? I think if I’d seen that in 2008 it would have blown my mind!
I had hoped to private message you in the Chat and leave you my contact number but the Chat did not allow me to message anybody - other than Everyone and the Hosts! We should not share any private contact details on here either which is a shame as other Chat Forums have a secure PM email facility! :cry:

Not long now until you journey up to Manchester. Hope your husband is still staying well?

2 Likes
111

@ChrissyD Lovely to see you too! :smiley:
And for your comments and advice. Always reassuring :slightly_smiling_face: I’m sure they will have helped others. Yes, I was hoping I’d be able to PM you too! Oh well :face_with_diagonal_mouth:
Presentation was v good but like you say ALOT of medical information that was difficult to process at times. Really, really interesting to hear about all the research that’s being done in Manchester. And just made us both realise how fortunate we are to be going up there in a few weeks. I really felt for the lady in Greece. She needs to get some more help /advice from her medical team. It was so good that you could advise her. Nick from leukaemia care is always brilliant I think! The presentation made me realise just how heterogenous Chronic myelomonocytic leukaemia (CMML) is ( that’s my new word for the day! )
My husband is doing well thanks. Finally managed to get his blood test result back from January, which interestingly showed his monocytes & white blood cell count have reduced a bit from the high reading in December ( when he felt poorly )
I’ve got all medical info ready for the appt now, so we’re good to go! :+1:
Hope all is well with you & the weather is behaving itself where you are? We got caught in a hailstone shower yesterday :crazy_face:
Best wishes xx

2 Likes
112

Hi @ChrissyD
I to enjoyed the LC call today. It was good to see some faces of other people with Chronic myelomonocytic leukaemia (CMML). I will try to join these calls as and when I can as they are very helpful. Hope you are keeping well.

4 Likes
113

@Lyndam Hi! Hope to see you on the next meet up too, in May I believe.
Best wishes

3 Likes
114

Hi @Lyndam. Great to hear from you again too. I think the next meeting might be a bit more of a peer support session as it’s really good for us to share our experiences and coping strategies!

I’m bumbling along - as ever -and looking forward to getting planting on the allotment and some warmer weather! :heart_eyes::heart_eyes:

3 Likes
115

Hi @Sisi

Good that you’ve got your husband’s blood test results back from January and that they have changed a bit since he recovered from the infection. Gives a more realistic picture of what his “new normal” is. My GP practice always puts the comment “Abnormal but expected” on my blood test results which my “kind” children always say sums me up well!! Nice! :joy::joy:

4 Likes
116

Hi @ChrissyD Thanks. That has made me chuckle! :face_with_hand_over_mouth: Wishing you a great weekend!
Best wishes

3 Likes
117

Hello @ChrissyD @Erica Hope you are both doing ok & Erica, that you’ve recovered from your biopsy? Just wanted to update you, as we’ve not long returned from my husbands appt at The Christie today. Firstly I must say to you Chrissy that I can’t thank you enough for recommending Dan Wiseman! We both so appreciate it!
The appointment went very well. In a nutshell, Dan Wiseman’s view is not to treat at the moment. As my husband has no real symptoms & the condition seems to be stable ( had new bloods done, nothing much changed ) So he recommends watch & wait at the moment / monitored with blood tests regularly at our local hospital. Also recommends another bone marrow biopsy in August ( Last one was August last year, so that’s understandable) He also inputted my husbands information into the IPS molecular calculator ( newer calculator ) where the results put him in a ‘low’ risk category, which was interesting ( CPSS Mol was intermediate 2, although it had been intermediate 1, until his white blood count increased slightly )
We’ve scheduled another appt with him in 6 months time ( might be telephone appt ) I didn’t want to loose the contact with him!
We chatted about Azacitadine, which was interesting, as he said really my husband isn’t eligible for it, according to NICE ! ( which I think you referred to some time ago Chrissy ) He’s hopeful that there will be new drugs coming along, so fingers crossed! :crossed_fingers: We are just SO grateful that we were able to see him & get his opinion & reassurance. What an amazing man he is!
Next step is he’ll write to our local hospital with overview from today & we’ll go from there.
And to make things even better, we get to spend the evening with our son tonight! :hugs:
Thanks so much again. Best wishes to you both xxx

3 Likes
118

Hi @Sisi. Thank you soooo much for the update. I was just about to come on and ask you and found your post. For some reason I didn’t get the email BCUK alert I should get when the @ is used! :cry:

Anyway. It sounds like that was a great consultation and to be honest I’m so glad that Dan was so conservative about any planned treatments - given your husband’s current lack of any symptoms, stability of blood counts and the new risk assessment tool that Dan used. Interesting too that he said he didn’t even meet the criteria for Azacitidine which is what I was concerned about! Not least the stem cell transplant that had been mentioned!

Hope you had a lovely evening with your son too. Bonus -as you said! :heart_eyes::heart_eyes:

I’m just about to post a link to an article I’ve received about more Chronic myelomonocytic leukaemia (CMML) research happening with Dan at Manchester so he’s such a great person to have in our corner! :+1:t3::+1:t3:

Once again, you must be so relieved to have got this additional opinion and honestly, bloomin’ well done to you for pushing for answers when you had so many queries and concerns. Your husband’s very lucky to have you but I’m sure he knows that! :heart_eyes::heart_eyes:

3 Likes
119

Hello @Sisi @Lyndam @Unclejack @Hellodolly and all with Chronic myelomonocytic leukaemia (CMML).

Thought you might be intersted to read this article I received today. It’s all about proposed Chronic myelomonocytic leukaemia (CMML) research in a new collaboration between Dan Wiseman and a biologist at Manchester. It’s good to know that Dr Wiseman is in our corner trying to get more answers about Chronic myelomonocytic leukaemia (CMML).

Hope all of you are well and that @Erica is recovered from her biopsy and will soon get results.

2 Likes
120

Dear @ChrissyD thank you so much for such a lovely message! I really couldn’t have done any of it without your support! A big hug ( if you don’t mind them :smiley: ) is making its way through the internet to you now! :hugs::hugs::hugs::hugs: I mentioned to Dan Wiseman that you’d recommended him :smiley: We were with him for about an hour. He was very impressed with my spreadsheet for blood work! :grin: It was great to be able to get a gauge on whether he thought things were stable at the moment, as sometimes it’s difficult as a layman, to understand properly what’s really abnormal or normal with regards to blood counts And high high or low they can go. So it was such a useful consultation. In fact the whole team at The Christie were fantastic. Amazing place, with lots of seating everywhere ! Never been to a hospital where there were so many choices of places to sit! :blush: xx Also looks like you’ve sent some interesting info, will have a look :+1:

2 Likes