You are here

Bcr-abl results

Hi all

Well where can I start, I was diagnosed with CML in October 2014 late October and was put on Nilotinib soon afterwards. I am 31 years old and mother of one. At that time I thought this was it my life is over (I was going to die somehow). The consultant and my husband continued to tell me that all will be well and that the prognosis looks good for me but I never believed them. The word cancer continued to give me nightmares and speechless to the point of not being able to share my experience with anyone. Well I had my Bcr-abl test on the 24th of December 2014. The results took a little while to be back and was starting to panic that maybe something had gone wrong hence the reason for delay. Belong and behold today, I then received my results saying that my Bcr-abl had fallen from about 75% at diagnosis to 0.123% IN LESS THAN THREE MONTHS.

This has been the best news ever and I am now looking forward to life without hopefully worrying too much about CML. I have been browsing the forum on daily basis reading other people experiences and was very encourage by many of you the journey you have took and how you are coping with CML everyday. Many thanks to Sandy and for responding to my other half enquiries promptly as this give him some info that he needed to support me effectively. I have never felt the courage to write anything on this forum until today as I feel better within myself and starting to believe that I will not die young. To those who are struggling with side effects e.t.c. my advice is hang on in there and give your body time to adjust to these miracle drugs. I could continue to write and write as I can not stop thanking everyone who has been with me on this difficult journey but let me end by saying THANK YOU ALL, happy new year and remember there is light at the end of the tunnel. Will continue to keep you updated.

Cheers

On fire

Hi there

So pleased for you . What a great result after such a short time - a good New Year present! It does take time to come to terms with a CML diagnosis and yes, this forum and Sandy's expert advice is a godsend and has helped to keep many of us sane.

Wishing you steady progress in the right direction throughout 2015 - keep with the positive thinking,

Best
Chrissie

Hi.... and many, many congratulations on a pretty spectacular result- one that is clearly well within the European Leukaemia Net and NCCN Guidelines for an optimal response. Getting anywhere near a PCR of under 10% Bcr/Abl @ 3 months is considered optimal and you have even done even better than that with a PCR at MR3 (0.1%).
As Chrissie has said, this news is a great way to start the New Year and go forward with the confidence that you are not going to die from CML. I am really happy that I and other members of this forum were able to support you through helping your husband in his understanding of the disease and its (TKI) therapy. Supporting 'carers' and loved ones of CML patients is an important part of what we do here via this forum. So often the 'caregiver' is overlooked is the drama of diagnosis, but they play such an important part in the story because if they are able to disseminate,understand the quite complex, and frankly scary, information that literally overwhelms us as patients, then they are in the position to more effectively reassure and support us, 'the patient'.
We really are 'all in this together'.

Your story/experience will go a long way to supporting the many people who read this forum and website but who do not feel confident enough to post.

I would like to thank you for taking the time to share your story at the beginning of your journey.

Sandy