Hello all, looking for a clearer idea of what this all means really.
My dad has just been diagnosed with leukaemia (the CMML type most likely, but we’re still awaiting a bone marrow test for the final confirmation of type and severity). This doesn’t seem to have its own category on this website even so I’m very lost (as I understand CML is different).
I find the information on the internet very conflicting - Especially since we don’t know the subtype of that subtype yet (I believe there’s a 1 and 2 even within the subtype of CMML?) and what this truly means for him. He’s been softly told that people can live with this for years - but when I google, it says something quite different for median survival rates. I’m not wanting sugar coating; I really want to know whether this IS something that people live with and what it means for his life overall.
I’m also looking for advise on living with someone with this and a compromised immune system and how I can keep him safe. Due to a big sudden bereavement of my own I still live at home but I need to go out often for work and I also travel a few hours away frequently. I’d love an idea of how careful I need to be around his immune system and ways I can make him as safe as possible.
Thanks so much in advance for any replies xxx
Dear @HelloNewbie, thanks so much for posting and I am sorrt to hear that your Dad has been diagnosed with CMML. As you mentioned in your post the clarification of his risk with not only guide the potential treatments available but also the outlook. As you have realised, CMML is relatively rare and is a separate condition with different treatment options because people with CMML can have features of both myeloproliferative disorders (MPN) and myelodysplastic disorders (Myelodysplastic syndrome (MDS)). There are various treatments for CMML but this will be decided once the definitive results are given to your Dad following his Bone Marrow Test. I am not sure if you have found much information regarding CMML but this Cancer Research link has some content and does include treatments too.
What is chronic myelomonocytic leukaemia (CMML)? | Cancer Research UK. Our colleagues at Leukaemia Care also have soem excellent information that may be useful to you, with particular sections on stagings and classifications: Chronic Myelomonocytic Leukaemia (CMML) | Leukaemia Care
I am sossorry to hear you have had a recent bereavement, this must be a really challenging time for you.
In relation to keeping your Dad safe i would suggest thaving a look at our website Living well with blood cancer | Blood Cancer UK and the following principles:
Ensure your Dad reports any symptoms to his Treatment Team - infection, pain, bleeding, unusually high levels of fatigue, swelling in the abdomen.
Ask him to make sure he has all the contact numbers of the team including the Out of Hours numbers (for weekends and evenings).
Attend or be on speaker phone for Consultations so that both of you can hear the information (with his permission of course).
Ensure he has all of his COVID vaccinations https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/covid-vaccine-blood-cancer/how-to-get-vaccine/
I do hope this is of some help. You are most welcome to call or email the Support Services to talk this all through How to contact Blood Cancer UK | Blood Cancer UK
Hi @HelloNewbie Gemma has given some great advice but you can always tune in here and talk to us if you need to or things get a bit much. We’ve all got experience of blood cancer either ourselves or people we care for and whilst there are many different blood cancers, the issues we all face are similar. Hope you are able to get the answers you need.
Hi @HelloNewbie I am so glad you have found us and you must all be in complete shock, especially as you have also had a big, sudden bereavement.
I cannot better @GemmaBloodCancerUK and @Franko responses to you.
Perhaps you might suggest to your dad that he takes this time to write down all his fears, questions, thoughts, feelings, medications, allergies, medical history and practicalities etc.
The advice for living with someone with blood cancer is to be guided by what your dad would like, he is the same person as he was the day before his diagnosis. Keep living your lives as normally as you can.
This is another good question for your dads medical team
You have to lead your life, perhaps wear a mask where appropriate, use hand sanitisers and wipes.
Perhaps just stick to reputable like this.
The main things are that you all look after and be kind to yourselves and spoil yourselves and keep posting on here.
Hello @HelloNewbie and welcome to the forum. This is often the most difficult part. Waiting is horrible and you try to find out so much Google becomes your new friend!
I’m glad you found this site though as @GemmaBloodCancerUK has given you some really useful links with reliable information. Sometimes Google isn’t the best place to go - I learnt that pretty quickly. @Erica has also given good suggestions on keeping safe. Just make sure you write down all of your concerns to discuss with the consultant. You’ll have a better idea then on how to plan ahead.
Sending lots and lots of love to you both x
I was diagnosed with CMML (definitely different from and far rarer than CML) in December 2020. I had CMML2 which is the most advanced stage. The stages are measured by the number of leukaemia blasts (baby cells). I guess he will have to have had a bone marrow aspiration and biopsy for them to have given a definite diagnosis.
It’s considered non curable, but is treated with chemo (in this country subcutaneous injections of azacitidine - 7 days out of 28). The one potential cure is a stem cell transplant if his health apart from the leukaemia is good enough.
I did the most enormous amount of research as there are no specific support groups - in fact I felt hugely isolated until I arrived here. BC UK are supportive of all types and there are people going through similar procedures and paths even though the specific cancers are different.
I had 4 cycles of the Azacitidine. My brother was found to be a full match, and I had a stem cell transplant 10 August 2021. There is a thread for stem cell transplant discussion and that may help.
I am doing well and the last bone marrow aspiration showed minimal leukaemia blasts. Fingers crossed I’m doing well.
If I can be supportive at all please ask away. It’s terrible to feel alone with worries. The cancer is rare so help appears to be hard to find but, as I said, lots of the other blood cancers have crossover features so people here do share the same paths xxx
Have my fingers crossed for you both
Hi @HelloNewbie I was wondering how are you and your dad are doing?
Look after yourselves