Xalkori...is 6 week scan too early? - 1251612

katenz
Posts:22

Hi, have just started xalkori last week, and wondering how quickly a scan will reveal it's effect (ie stable, better or worse)? Once I know what's happening, I can plan to move home to the other side of the world and want to go ASAP, so the sooner I know, the better. I'm hoping that my onc will do a scan end of jan, which will be approx 6 weeks. Is this too early to see a response?
Thanks, kate

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Reply # - December 20, 2012, 07:51 AM

catdander
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The time varies from doctor to doctor but standard taken in clinical trials is 6 weeks. So that 6 week schedule you're hoping for is right in line with the standard and what many doctors give for checking efficacy of a new treatment.

I hope xalkori is working and you get home soon. It sounds you couldn't get treatment any further away, whether it works or not it's worth the great effort of being away from everything you know to try.

I hope you've found people who can help you feel closer to home.

Janine
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Reply # - December 20, 2012, 08:17 AM

katenz
Posts: 22

Janice, thanks, that was the answer I was hoping for. I've been living in the uk for a while now, but since the stage 4 diagnosis, getting home to nz is so important. I'm hoping that xalkori will give me that window to make the big move. I feel confident I can push for the 6 week scan now. Cheers, kate

Reply # - December 20, 2012, 09:42 AM

certain spring
Posts: 762

Hallo Kate. I am sorry to hear about the diagnosis, especially being away from home. But, in the face of such difficult news, it is wonderful you have managed to get crizotinib, and I really hope it works for you. Six weeks for a CT sounds reasonable to me. You might want to look at the ALK/ROS patient group thread, populated by helpful people who are staggeringly knowledgeable about Xalkori (side-effects, drug interractions, you name it):
http://cancergrace.org/topic/alk-or-ros1-nsclc-patient-group/page/6/#po…
Do you mind if I ask how you managed to get it prescribed? I had thought it was still only available as part of a clinical trial. It is great news if NHS oncologists are now able to prescribe it as a treatment for ALK patients. I bet you'll be able to make it home - it seems that when it works, it is a fantastic drug. Best wishes.

Reply # - December 20, 2012, 09:53 AM

katenz
Posts: 22

Hi CS, I have been keeping an eye in the ALK/ROS1 thread and already found it helpful in relation to side effects etc, had nothing significant myself but still early days.
I have been very lucky and got the criz thru the Cancer Drugs Fund. It was just approved on nov 30th, but I believe that it might be regional. I'm in london so not sure if it's available nationwide as yet. I believe that it may be possible to get via compassionate use also as that was another avenue we were looking at. We had also thought about trials but couldnt find anywhere in London that it was running.
Thanks for your reply, cheers, kate

Reply # - December 20, 2012, 10:40 AM

certain spring
Posts: 762

Oh, so you are totally up to speed then!
Thanks for sharing your experience - I wondered if the Cancer Drugs Fund was the source, and I think you're right, they decide things via regional committees. Nonetheless, it's useful information - could be helpful for others in the future.
Hope you feel better very soon.

Reply # - December 20, 2012, 03:23 PM

Dr West
Posts: 4735

Yes, I agree that 6-8 weeks would be appropriate, and there's good reason to be optimistic about the result with XAKLORI (crizotinib) for a patient with an ALK-positive NSCLC.

Good luck.

-Dr. West

Reply # - December 20, 2012, 03:30 PM

katenz
Posts: 22

Thanks very much Dr West. I was just reading your piece from July about the cost of new cancer drugs and realise (again) how lucky I am to be getting crizotinib thru the NHS at no cost to me. I am the first person at my hospital to be on criz, but I hope more and more people will now have access to it. Now I just have to work on getting it in New Zealand!
Cheers, kate

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