My CML/AML is now terminal

Dear Jackie,

I wanted to say thank you for the calmness of your post and the reassurance you offer to other people with CML, at a time when your whole world must be reeling. We are told when we are diagnosed that we are in many ways fortunate to have this type of cancer, and indeed I suppose that most of us are, in that the treatment we often receive has amazing statistics to vouch for its effectiveness.

What's happening to you is the type of thing that I dread above all else- that the proactive support and positivity of doctors and specialists turns to despair and talk of a dramatically shortened life-expectancy. There's nothing to be said that will make the news you have received or the coming months any less upsetting for you and those close to you, but I wanted to let you know that I found the way you wrote your sad post, and many of your previous comments, inspiring, hopeful and kind.

It is only very recently that I have genuinely come to terms with the deep truth behind the throw away phrase that "we all have to go sometime". I am truly sad for you that it sounds like you will be going sooner rather than later, and I will be thinking of you over the coming months and willing that you find strength and comfort in the love of your family. I hope that they continue to use and feel supported by this site, which plays such an important part in the personal battles of so many people.

I also hope that you find balance between the fear and sadness you may feel with joy and optimism that you have made a positive difference to those who know you and those you have touched.

Yours-

Adam xxx

Dear Jackie, 

I am very sorry that you have suffered so much in spite of being diagnosed with "the best kind" of leukaemia. There is never a "best" kind of course and we all know that. However, to be diagnosed with CML in the last decade has been described as fortunate because it is 'relatively'  less complex than other cancers to understand on the celular/molecular level and the revolution of TKI therapy changed the outcome. That is why the majority of people newly diagnosed in chronic phase, are told that the disease is more than likely to be controled and to expect remission for the long term.

However, there are a few cases, like yours and some other members of this site, that are more complex and there lies the danger of progression to acute phase CML- which closely resembles AML- or the development of AML from mutations in ph negative cells- i.e abnormalities that are involved in the development of myelo proliferitive disease, which can often transform into acute leukaemia.  This might be what has happend in your case. 

Sorry is not a word which can adequately express my feelings when I read your post, but I hope you accept my my sorrow as well as my admiration for you in your acceptance of such a dire prognosis, and for sharing your feelings with us on this forum. I am not sure I could have done the same with such poise. 

Adam has already expressed very well a lot of my own senitments, but I would like to express my deep gratitude to you for sharing what must be for you and your family such devastating news, in a way that is reassuring to others that although such complex cases like yours do exist, they are relatively rare.

Nevertheless, for the small percentage of people with complex mutations in either ph+ and/or ph- cells, the fear of progression to an acute leukaemia is very real and close monitoring by clinicians is essential. 

Please Jackie, if over the coming days and weeks you feel the need of someone to talk to, whether privately or on this forum, do not hesitate to make contact. 

To know one is loved unconditionally is all one can ever really ask of this life.

There is a poem written by the American writer and poet Raymond Carver, called 'Late Fragment'. His words  helped me when I had was forced by my own diganosis of late chronic phase CML in 1998, to turn and face my own mortality. 

LATE FRAGMENT

And did you get what

you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself

beloved on the earth.

Raymond Carver. 

Sandy

I 

...to read your post. Just to echo everyone else's sentiments that my thoughts are with you and your family. Your bravery is truly amazing at what must be a hellish time - stay strong

k 

Jackie, I read your post & wanted to reply but couldnt find the words to articulate how I felt & I still feel that way, but thought it important to say something to you..  This is the senario we all dont want, but have no say in our future. It brings home to all of us how fragiel life is especially when cml rears its ugly head. Adam has put into words how i feel, thank you Adam!

You are so very courageous & I admire you for the strenght, courage & peace that you  generate. Words still fail me. You have also brought home to me (& my family) how important it is to talk. I have found that sometimes my friends, family & also myself become a bit complacant... it will be ok, youll get the drugs, its not that bad, keep taking the pills, your positeve atitude etc. dont get me wrong, i have a lot of support, but my inner feelings arent exposed to those I truley love, thats a place just for me, they dont need to know, I dont need to worry them further. 

You  are so full of hope for  future cml patients, as we all are, it can only get better, research is discovering wonderfull drugs. Your optimisum will continue for many years to come. You are so kind in your thoughts for others.

From the bottom of my heart, I am feeling for you,  your family & friends. I wish you all peace,  tolerance, strenght & courage for the months ahead.

Ali, with love for you. 

I am so sorry to hear of your diagnosis. You have been very kind to me and others on this forum. I hope your consultant can find some treatment for you, I keep everything crossed.
Thinking of you and your family.
Em x