Crizotinib update

[nannyjanny]

Hi everyone. Thought It was time for an update on how my husband Steve is doing on crizotinib. He started it last September and is still taking it. His original side effects have virtually disappeared and it really has given us our life back. He's just had a stable scan which is great. We had a blip back in April when we had to return home early from our holiday in Wales due to Steve feeling unwell with stomach problems. A few days later he was in hospital undergoing lifesaving emergency surgery due to a complete bowel obstruction and has ended up with a stoma which he is coping with very well. This was due to diverticular disease and NOT cancer which of course was everyone's first thought. He has seen the consultant surgeon since and she has discharged him as all is going well. He had to be off crizotinib for nearly 3 weeks but was able to go back on it thank goodness. We are just getting back on track again and enjoying life again. It was out of the blue and you really don't know what is round the corner. It makes us more determined to enjoy life. Good Steve is so positive and determined!!! Hope everyone is doing well.

[sue2428]

long may it continue nice to hear somthing positive stay well god bless x

[nannyjanny in reply to sue2428]

Thank you sue2428

[Genie123]

Glad to here he's doing ok, all the best.and may it continue, enjoy every day the best yu can.😀

Jean x

[nannyjanny in reply to Genie123]

Thank you Jean. X

[Lifesab]

Hello Jan and Steve.

Good to hear from you. Fantastic news that the Crizotinib is working well. Can't believe the bad luck vis a vis the diverticular disease. As you state, you never know what life is going to throw at you next.

I have just celebrated my second anniversary on Crizotinib and a recent scan showed everything was stable. My consultant is very pleased as, of course, we are.

We continue to spend as much time as possible at our home in Greece. The benefits of vitamin D can not be over emphasised. We've just spent 6 hours at our allotment which goes to show my energy levels are high.

Our best wishes to you both. Enjoy the summer.

Alison and Colin

[nannyjanny in reply to Lifesab]

Thanks Alison and Colin.

We're pleased to hear that you are still doing well Colin and that you are both enjoying life. Not much vitamin D around here this summer but we can but hope!

Keep up the good work on the allotment.

Best wishes

Jan and Steve

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

I am sorry your husband had a bowel obstruction and now a stoma. But it is great you have shared this and to read your encouraging story. I think we can all take a lesson from this to seize the moment. Thank you for your blog.

It is good to hear your husbands experience with Crizotinib and how it has given some quality of life back, all the best.

The Roy Castle support team

[nannyjanny in reply to RoyCastleHelpline]

Thank you. This is such a good site to share things. I've found it very helpful in all sorts of ways.

[Bow-19]

Glad that crizotinib is working and giving you your life back. I am taking it and have found it to be good too Xx

[nannyjanny in reply to Bow-19]

Thank you Bow-19. Glad it works for you too. X