jmpchic
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Posts:34
I hope that this isn't a repeat of last info. I did search the forums first but couldn't really find an answer. My husband has been on Zykadia for 19 weeks today. He has remained on 750 mg. Up until now he has had minimal side effects. Liver function studies holding steady and only a few days here and there until this past week. Now he's had about 5 days of diarrhea. I'm just wondering how long before a dose reduction is needed? We've been trying Imodium which works but not for long. We saw his oncologist 2 weeks ago and of course no side effects at that time. Just wondering if there is a standard time to dose reduce once GI side effects start.
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Reply # - October 18, 2015, 04:04 PM
Hi jmpchic,
Hi jmpchic,
I'm sorry that your husband has been having such persistent trouble with Zykadia. As with any treatment, individual patients react differently and experience varied levels of side effects so there really isn't a specific time period for when a dose reduction is appropriate for a given patient. It's more a question of when the side effect becomes unmanageable, determined as a combination of patient discomfort and inability to remedy the problem.
Dr. West has written about Zykadia toxicity and dose reductions:
"Toxicity is a potential challenge, more so than with XALKORI, especially gastrointestinal issues. Nausea was noted in 82%, diarrhea in 75%, vomiting in 65%, fatigue in 47%, and liver function tests were noted to be abnormally elevated in 35%. These issues were dose-related, and many of the researchers with the greatest experience with this agent have conveyed that the dose of 750 mg daily may be too high for many people, but that they have often had a more successful balance of efficacy and tolerability after reducing the dose to 600 mg or sometimes 450 mg per day (4 or 3 tablets, respectively).” http://cancergrace.org/lung/2014/04/30/new-approval-for-zykadia-ldk378c…
In the same thread, Dr. Walko stated that "the median time to the first dose reduction was about 7 weeks." Since your husband is at 19 weeks, he's well past that figure, which only represents the experience of a group of patients rather than an individual.
JimC
Forum moderator
Reply # - October 18, 2015, 04:22 PM
Thanks for the quick reply!
Thanks for the quick reply! He really has done so well and has had such a great response that we hate to mess with it. But, we've kind of been anxiously awaiting/ dreading these GI effects. I hate to see him go too long with it but also hate to jump too quick. I'm always looking for input because my husband is the only patient on ceritinib at our facility. Plus, on top of it all he is heading out for a hunting trip (one we never thought he would be able to take) and the thought of diarrhea in the mountains of Wyoming isn't very appealing to him! Although not ideal, I wonder if a dose reduction for the next few weeks would be reasonable to minimize effects during his trip? I am going to discuss that plan with our onc tomorrow. I know the big picture is most important but I so want him to enjoy this hunting trip! He has looked forward to it for a year and it is his five year survival celebration. When he had progression in May he was so afraid of what the future held. Now we are a week away from his trip and fighting diarrhea and what I think is the beginnings of a nasty respiratory infection!
Reply # - October 20, 2015, 12:15 PM
Hey chicky , :)
Hey chicky , :)
It's so good to hear your husband has this fabulous celebration trip to look forward to. I wanted to add a bit about symptoms like diarrhea. An over the counter product like imodium might be very helpful. When my husband took tarceva he would sometimes take imodium type med before going out as a preventative. As his onc or onc nurse about if and how often to take.
I hope he's not moving towards an infection. Good luck and let us know how it goes.
Janine
Reply # - October 20, 2015, 03:35 PM
Well, we saw the oncologist
Well, we saw the oncologist yesterday. He said it is ok to reduce dose during week of hunt. Jon is actually starting to get daily nausea with his zykadia, too. Although, it is always difficult to determine what is causing what. He started an antibiotic Saturday and is hopefully on the other side of this infection. CXR was normal...well normal for him! We've been doing compazine or zofran with his chemo which took care of the diarrhea...now he is constipated!! Always something, but we are trying not to sweat the small stuff and hoping he gets better respiratory wise for his trip. Diarrhea and cough are not the greatest combo for hunting antelope!!