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4 and a half years. Life goes on.

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Well, i don't post very often here nowadays, but this group is so important to me that i feel i have an obligation to come here and tell what's going on with me to help others. Well, i was diagnosed in late 2013, failed imatinib 8 months later (6.5% PCR at the time), and started nilotinib around that time. Most of that time i had problems with low platelets, thyroid function and, until recently, high pancreas enzymes and blips on the pcr (lost a zero early this year). Now, 4 and a half years later, i've just received my most recently results: platelets almost normal (131 - normal: 140-450), pancreas and thyroid normal, and a PCR of 0.0017% IS (almost 5 logs!). What i have to say to the newbies is that there's hope even if you have to change meds, if you're suffering from side effects and "blipping". My quality of life is very good nowadays. i work, i study, have quality time, travel, etc.. For the first time since i've been diagnosed i did not get highly stressed while waiting for my PCR and that was amazing. My diet is very healthy and i think that's why my pancreas enzymes are back to normal after more than a year of very high readings. If you're passing throught a bad time now, chin up. our journey is a marathon, not a sprint. Sometimes it's a bumpy ride, but most of us have the tools to overcome that situation.  Cheers!

Lucas that’s Amazing! I am only 4 months in and on Nilotinib got my day 100 PCR on the 23rd of this month. To say it’s all a very emotional and a stressful time is an understatement! I am hoping I am one of the lucky ones to respond to treatment. Mentally it’s been bloody tough!

I appreciate your post to offer support and encouragement it’s not something you’re obliged to do but I understand fully why you’ve done it.

I hope one day I’ll have a sense of a “Normal” life again as it’s been turned pretty much upside down.

Massive congrats to you!

Alex

Yes thank you so much Lucas. Very encouraging to hear your update and very happy that life is good for you now !

best, Louise 

“Life goes on”. Don’t it ever.
I use to wake up to a new day. Every day.

Now I wake up to the same day. Every day and I have to make it new.
I have become better at reinventing my days.
I think maybe you are doing something similar.

Good luck and “Life goes on”.

Romo

Hi Lucas,

Great news, your posts are always uplifting... no matter how rare ... and good to hear your Pancreas is behaving. 

Sandy

Big like on that Lucas! Thanks for spreading positive news. :-)