Going off Xalkori - 1252022

ellen
Posts:3

I've been on Xalkori for 2 1/2 years (started in a clinical trial). It is no longer working so I hope to be in a trial for LDK. There is a wash out period of one week wherein I do not take the Xalkori. Can I expect the side effects to go away once I'm off? These aren't debilitating, but they are annoying. I've had major edema for over a year and the peripheral neuropathy I got in one of my first treatments has gotten worse. It would be great if they dissapated without the Xalkori.
Thanks, Ellen

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Reply # - December 30, 2012, 07:18 PM

catdander
Posts:

Hi Ellen, I'm sorry you are having to start a new treatment. I understand you can expect most of your side effects will subside as the drug leaves your body. Though neuropathy is caused from irritated nerves that don't always return to normal after a long while. Though my husband's nerves from a thoracotomy 3 and half years ago are still healing. So if it doesn't happen quickly don't give up.

Here is a link to a growing user group who are on xalkori. They may be able answer you best.

Much luck,
Janine

Reply # - December 31, 2012, 01:19 PM

Dr West
Posts: 4735

Janine forgot to include the link, which is here:

http://cancergrace.org/topic/alk-or-ros1-nsclc-patient-group/page/6/

That was kind of her to leave something for me to add, since she explained everything else as well as anyone could. We typically see the side effects of these daily oral therapies abate over a course of a few days off of them.

Good luck with the LDK trial. There's a lot of hope around that one.

-Dr. West

Reply # - January 1, 2013, 03:42 PM

ellen
Posts: 3

Hi and Happy New Year. Thank you all for responding. I just now got to the comouter. Yes, LDK 378 is a second generation drug targeting the ALK mutation, for people who have progressed with Xalkori (alas, that is me). It is in clinical trial now and I am hoping to get into the Phase 2. I am currently doing CyberKnife in a desperate attempt to save my lung. Then there is a 2 week wash out period. Then, if I do ok on my pre trial scans, I can start the trial. I am very hopeful because Xalkori was effective for me for a long time (and because my options seem fairly limited).

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