I just got an early Christmas present today. A letter from the consultant to say that on my journey with chronic myeloid leukaemia I have had a blood test which could not see any leukaemia. This is almost four years from the start of the adventure. I have learnt so much about myself and my family over that time. Boy oh boy am I lucky. Here’s wishing you all some good news along the way. To remind me of how lucky I am I still get to take my chemo drugs and remain immunosuppressive so cannot wait for a Covid vaccine but hey what a good day!
Hello @GrandmaJo. I had such a big smile on my face as I read your post. That really is such amazing news and prob the best Christmas present you will get this year! I’m always interested in what people have learnt about themselves? X
Oh @GrandmaJo, that really is good news and thanks for posting it.
Yes, we are the lucky ones in so many ways although during this year I have forgotten this at times.
Thanks for reminding me.
You really celebrate and take care.
Congratulations- this is such positive news for all of us on this CML journey - I’m 19months since diagnosis and static at 4.6
Hi @Lynda, how are you doing in lockdown?
That’s amazing news… and what a time to get it too…
Wonderful, wonderful news. Absolutely lovely. What more could anyone ask for.
So good to hear your news. It gives us all a boost
Amazing news. Have a wonderful Christmas.
Fantastic news for what has been a terrible year to hear such news is amazing have a wonderful Christmas
Hang on in there. Wouldn’t it be easier if we all got a timeline with the diagnosis? Sadly not. I had no idea it would take this long but I was on the borders of the blast phase and so the consultants probably guessed it. My scores plateaued for ages and they had two conferences to discuss if my drugs should be changed. Each time they said “Let’s wait and see.” Then this last year a steady decline.
What I love is how over those four years they have stopped the marrow coming from the hip bone and have a blood test instead. My chemo drug has been through the courts and made a generic drug and therefore so much cheaper for the nhs. My local hospital has made a secure locker for chemo drugs to be brought from the big hospital. ( Silly I know but this makes my leukaemia feel like a local problem not a big hospital issue.)
You will get there. Try to enjoy the journey and not worry too much about the numbers as long as they do not rise obviously but even then worrying just depletes your energy. Share any worries here, it helps get it off your chest.
I also got my diagnosis three days before Christmas. Not such a good gift but it did mean that I could tell my family in person without a family type call to arms. I did not have symptoms really and so even then I felt it was a Christmas gift complete with nasty chemo drugs though!
I got my diagnosis on the 16 December so it was an unusual Christmas gift a complete shock for me too, but as you say meant I could tell family in person and in my case put it in my Christmas letter. I did however tell my son on the phone (he was 30yrs old) and I think I could have been more sensitively and told him in person.
Anyone else got early Christmas presents?
That’s a Christmas present indeed. So happy for you
@GrandmaJo ditto to everyone else we’re so happy for you!
And you give such good advice on managing understandable worries people can have. Like you say, when you can find ways to shift your focus, I can imagine it can give you so much more energy- and this alone can do a lot for anyone’s well-being.
Hi @GrandmaJo. Great news indeed I’ve just joined and was looking for other CML posts. I’ve had a rocky ride since being diagnosed end of February this year.
You can hopefully enjoy a good (if restricted due to COVID) Christmas this year
Hi @AnnC76, great to have you here and really good that posts are helping you already. What a difficult time to receive a diagnosis! How are you managing? X
Hi, I’m having a rough time with the treatment unfortunately. I was diagnosed at the end of last Februrary and was taking Imatinib 400 mg but after 3 months, although my numbers were going down, I had so many side effects including nausea, vomiting, constant diarrhea, leg swelling, rash and violent stomach cramps so had to come off it until I got to see consultant.
He suggested taking a break and then starting back on a lower dose 100mg and working my way up gradually but I couldn’t even keep that down so I was on and off it for too long really and my numbers went up Luckily, after a month on the full dose the numbers are going down but after 10 months they should be a lot lower.
I’m 76 and take care of my disabled o/h who has had 2 strokes so life isn’t great at my time of life.
Thank you for asking xxx
Hi @AnnC76, a great big welcome to our forum, I am glad you have found us.
You certainly have had a rough time of it over the last year and it must be even more challenging trying to go through treatment whilst you take care of your o/h.
Let alone Covid times in the mix.
What I have found is that this forum is a really supportive place where I can say what it is really like to be me, where perhaps I cannot with other people like my family and friends. All those thoughts, feelings, fears, symptoms and practicalities. Often it does not matter what blood cancer we have we just seem to share them.
If you need to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at email@example.com (opening hours will probably be different over the holiday season).
We will all be supporting each other over the holiday season and beyond.
How are you feeling now?