Recent diagnosis CMML

[Unclejack]

@Sisi
Hi Sisi
Great news. My recent bone marrow test was according to the results normal. Remarkable according to haemotologist. I to am on watch and wait until next blood test in June. Hopefully we can all keep off treatment for a long long time. Great to have Chrissy D and Dr.Dan in your corner. Hope you are both well. Other than my arthritis I feel great.
Very best wishes Unclejack.

[Sisi]

Hi @Unclejack Lovely to hear from you & thank you for your best wishes. Much appreciated. So great to hear your bone marrow biopsy was ‘remarkable’. I love that! Here’s to, like you say, holding off treatment for as long as possible Good to hear you’re feeling well ( apart from arthritis) My husband also suffers from arthritis in his knee, so trying to balance rest & being active can sometimes be a bit tricky. It’s interesting, the Dr we saw at the end of last year ( to discuss eligibility for Stem cell transplant ) said often people with Chronic myelomonocytic leukaemia (CMML) have additional inflammatory conditions / arthritis. But perhaps that’s due to the average age of patients with Chronic myelomonocytic leukaemia (CMML)!
I hope you’re enjoying the sunny weather. Have a good wkd & take care xx

[Unclejack]

Hi Sisi
Below are my cytogenics.46xy
High throughput sequencing ASXL1, VANX1 mutated, SRSF2 MUTATED, TET2 MUTATED
No evidence of progression. CT scan normal spleen. No evidence of lymphoproliferatiom
Hope you find my results useful
Best wishes unclejack.

[Sisi]

Hi @Unclejack Good to hear from you. And thanks so much for sharing your results. Very glad to hear things are stable for you at the moment. Long may that continue! My husbands gene mutations are…although I hate that word mutation! ASXL1, U2AF1, CBL, KRAS. His next blood test is June / July, followed by another bone marrow biopsy end of July. Here’s to everyone keeping as well as they can. The sunny weather certainly helps Best wishes to you for a restful Easter wkd. Take care xx

[Sisi]

@Erica Hello! Just wanted to say hi & ask how you are? I hope you don’t mind me asking but was wondering how you got on with your test results? Ofcourse if you don’t want to share I understand but was just thinking about you. Sending love & hoping you’re having a relaxing Easter wkd with lots of chocolate
Best wishes to you xxx

[Erica]

Hi @Sisi thanks for asking all’s well more tests in 3 mths.

[Sisi]

@Erica Glad to hear all is well Sending love

[Unclejack]

@Erica
Morning Erica stay well you do so much for the rest of us get plenty of rest if you can!
Best wishes unclejack.

[Heidi_BloodCancerUK]

Hello @Unclejack @Sisi @ChrissyD @Lyndam and others,
I hope you are all well.
Anyone else shocked that it’s the end of April already?
I am not sure if you already know that our Health Information team has just published new Chronic myelomonocytic leukaemia (CMML) information on our website. I thought I’d share the link here for anyone new, or those reading through this thread possibly looking for information: CMML information pages
Please feel free to direct others to the pages on Chronic myelomonocytic leukaemia (CMML) on other threads if you think it would be helpful to them - obviously people come to the Forum for peer-to-peer support, which you are all so brilliant at, but sometimes our health information is good signposting too.
Enjoy the rest of the week and whatever plans you may have for the bank holiday weekend.
Take care.

[Sisi]

@Heidi_BloodCancerUK Thanks so much for flagging this up. In fact I came across it only yesterday & thought it had been updated. Very comprehensive & helpful information. And yes, I can’t believe it’s May tomorrow either! Where did April go??? Hope you’re able to enjoy the sunshine Thankyou for all that you do! Best wishes.

[ChrissyD]

@Heidi_BloodCancerUK @Sisi @Lyndam
Heidi.Thank you for alerting us to this.It’s such a great resource, clearly set out, and one I wish had been there 17 years ago when I was trying in vain to find out why both my lungs and abdomen were filled with fluid when my Chronic myelomonocytic leukaemia (CMML) kicked off! None of the 3 consultants/professors I saw over the next few years knew that it was a symptom of early Chronic myelomonocytic leukaemia (CMML) and it took my own research to find a little-known paper which explained that “serous effusions” can occur which can cause fluid around the lungs, the heart and the abdomen! These should have been “red flag” symptoms to the GP I saw, requiring immediate referral! Ah well. Now we know! Thanks to BCUK for providing this informative resource for our rare disease. I shall inform Myelodysplastic syndrome (MDS) UK and Leukaemia Care who also support people with Chronic myelomonocytic leukaemia (CMML).

[Sisi]

Oh @ChrissyD Thinking of you all those years ago. And yes what fantastic resource this is

[Lyndam]

Hi Chrissy D @ thank you very much for this info. I have been looking forward to info on Chronic myelomonocytic leukaemia (CMML) on blood cancer Uk. Plenty of reading material for me. Have started to read through it and it is very interesting. Hope you are well.

[Unclejack]

@Sisi @ChrissyD
Just read a blood cancer article about Metformin diabetes drug looks promising to stop Acute myeloid leukaemia (AML) development in some people ,our Chronic myelomonocytic leukaemia (CMML) has a nasty way of transformation to Acute myeloid leukaemia (AML). I wonder if that could stop Chronic myelomonocytic leukaemia (CMML) progression to Acute myeloid leukaemia (AML)? Blood cancer UK has been involved in the research with Cambridge university , cancer UK, and the welcome trust.
Well worth a read.
Best wishes unclejack.

[Sisi]

@Unclejack Hi & Thank you for this, yes I was reading about this the other day, very interesting!
Let’s hope there’s positive news in the not too distant future. Best wishes xx

[ChrissyD]

@Sisi and @Unclejack

Thanks for that @Unclejack. It seems that this applies to one particular genetic mutation but could be interesting nevertheless. Trials only on mice so it will be a long way off before any conclusions can be drawn on human responses. As the drug is already in use for for treating diabetes, it may get through to the next phase more quickly. This is the link to the article.

Blood Cancer UK | New research shows a common diabetes drug may prevent...

[Aun]

Hi , im new here i see that your monocytes are getting better so it is good thing , why they say that you have Chronic myelomonocytic leukaemia (CMML) if your monocytes are better than before , can you explain please

[Erica]

Hi @Aun welcome to our forum.
Perhaps this is a question for your specialist nurse or medical team as they know you and your medical history and unfortunately we cannot answer medical questions.
Please do let us know how you get on.
Really look after yourself

[Duncan]

Hello there @Aun, I’ve seen your posts around the forum and am sorry to read of your fear. I’m guessing you’re seeking information about blood cancer, and I can empathise about how scary this stuff can be.

Here’s the Blood Cancer UK information about Chronic myelomonocytic leukaemia (CMML): Chronic myelomonocytic leukaemia (CMML) | Blood Cancer UK

Like @Erica says, it’s probably best you ask your doctor about any blood cell number queries as we are all so different. Even people with similar diagnoses to each other will have unique treatments and responses to medicines.

Just a thought but if you’re outside the UK is there a blood cancer organisation nearer you that might offer advice? They will have better local advice about treatments available where you are.

Hope that helps @Aun!

[Aun]

Hello, thank you for your interest I am afraid that I will not get enough information In my country, even patients with normal leukemia do not receive enough attention and information, let alone this rare type .So, out of fear, I told myself to ask people about their experiences in order to evaluate my condition myself,because what I read in scientific articles was very suspicious, and I am afraid and devastated. It is only a few months, as they say.