Just diagnosed with cmml anyone else got this not much information about this thanks Andrew
Hi @Andrew2 ,
I am so sorry to hear of your recent diagnosis. May i ask how you are coping?
Please do know that should you prefer to talk anything through, our support line is always here for you- 0808 2080 888.
Unfortunately, we don’t produce a fact sheet or specific web page on CMML but do somewhat talk of it on this webpage below where you will also see that we are looking to expand our patient information on this condition- Blood cancer types explained | Blood Cancer UK.
It may also be helpful to see this webpage from Leukaemia Care, which has information about CMML: Chronic Myelomonocytic Leukaemia (CMML) | Leukaemia Care.
Additionally, Andrew we have a newly diagnosed booklet which is more generic for all blood cancers offering lots of information around what happens next- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop.
I hope this provides some of the information you are looking for Andrew and please do let us know if there anything else you would like support with.
Take Care, Lauran
Thanks for your reply im feeling a bit unsure about whats going to happen
Hi @Andrew2 gosh, a diagnosis is really a shock, I found it took me a long while to come to terms with it and I can remember thinking and feeling that I was the only person in the world, a very isolating place to be, I sort of felt in a bubble with the world just going on around me.
@LauranBloodCancerUK has given you a brilliant response and we are all here to support you. I have found that it does not seem to matter which blood cancer we have we often share similar thoughts, feelings and practicalities.
Just give yourself time and be ever so kind to yourself.
I look forward to hearing more about you so please keep posting.
Ok i will do thanks Andrew
Hi Andrew I have Polycythaemia vera (PV) and may have CMML as well. My diagnosis was earlier this year and I still get periods of feeling uncertain.
I have done lots of reading and the good news is itvdoes not have to be life limiting. Keep fit and healthy seems the best advice if you don’t have significant symptoms. I have also been adviced to keep a diary to record any changes in how I feel. So farvsobgood for me I hope youbare similar. Thisnisba good site for information and there is also Health Unlocked.
Keep well and stay in touch.
Hi @Andrew2 and welcome to the forum. I can see @LauranBloodCancerUK and forum members have given good advice. We were all where you are now and all understand the emotions involved at that initial stage of diagnosis.
Please use the support line if you need to and the forum is always here for you
Hi dougyw thanks for the reply iv got the same Polycythaemia vera (PV) and cmml iv got hospital next week ill let yo know what they say i haven’t really got any symptoms at the moment apart from itchy skin which comes and goes thanks Andrew
As a question did the CMML diagnosis get made just from you blood levels? The research Ive done says the Polycythaemia vera (PV) can cause the elevated white cells and a genetic test is required to confirm this.
I see my consultant at the end of the month for this result.
Initially they though it was just Polycythaemia vera (PV) had a bone morrow biopsy which took 5 weeks to get the results and now have what they call overlap to cmml i have monosites in my blood soory about the spelling im at hospital next week to find out what the plan is hope this is helpful
I’m really sorry to hear about your diagnoses. It’s really hard to take it all in & absorb the information given by consultants. As others have said it may help you to call @BloodCancerUK to talk to someone also having Polycythaemia vera (PV) which is a MPN (myeloproliferative neoplasms) MPN Voice have some really useful booklets dedicated to MPN blood cancers. I hope this helps you & as a fellow MPN sufferer am here to support you. Please take care
Hi @Andrew2, I was diagnosed (via Bone marrow biopsy and aspiration) with CMML2 in Dec 2020.
It’s scary because it is so very rare. But the treatment I had was :-
Azacitidine - a sub cutaneous chemo (7 days on 21 days off) for 5 months.
During that time I was assessed to see if I was healthy enough for a stem cell transplant and donors were tested.
I had the transplant in August 2021, so am now 15 months post transplant. I appear to be in remission . Now on the long journey of being revaccinated with all my childhood immunisations and Covid shots and flu.
Feel free to DM me with any queries. Now you know someone who has recently been through the journey I hope the journey will not seem so fearful; but it is all an anxious time. Sending best wishes x
Hi chrisckw thanks for your message it is a scary time iv had the same bone marrow biopsy and aspiration im not sure what stage of cmml im at im off to addenbrooks hospital tommorow and hopefully have a plan going forward im on oral chemo at the moment yo have definitely made me feel more positive about this thanks ill let yo know how it goes tomorrow take care Andrew x
Hi @Andrew2 from what I have heard you are lucky to be going to that hospital, please let us know how you get on, and as she has said @ChrisCKW has recently been through treatment and I am sure will be of a brilliant source of her experiences.
Don’t be afraid to ask all the questions you want to.
I will be thinking of you and it is the unknown that is usually so fearful.
Thanks erica i will let yo know how i get on tomorrow yo are right its the unknown thats the worst thing take care Andrew
Addenbrookes is where I was treated. The team there are incredibly caring. I don’t think there is anywhere better.
Let me know who your consultant is tomorrow, and know that you are in the best possible hands x
My consultant is Dr Andrew King, but the whole team are good.
I hope all going well, it’s a miserable day outside for travelling
Hi got my plan goin forward they are going to start talks about Stem cell transplant had to have platelets transfusion yesterday due to my platelets dropping to 10 they think this was because of increased medication im feeling a lot more positive today i know thears worrying time ahead but im ready for fight thanks Andrew