Waiting for PDL1 to kick in - pain management? - 1259780

datgirl365
Posts:8

Hi -- I'm a newbie to the forum..
My mom was diagnosed with Stage IV lung cancer (NSCLC) in June 2012 - hopefully, the history shows up in my profile below. She is now in the PDL1 trial. It took awhile to get on this trial - during this time she had increased and persistent pain. We are trying to manage the pain with hydrocodone and tylenol - and hoping PDL1 kicks in -- sooner than later. Unfortunately - the pain is still pretty intense. Any suggestions on how we can manage the pain? Or any ideas on how long it takes before PDL1 kicks in and brings some relief (assuming it works)..

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Reply # - October 10, 2013, 05:40 AM

JimC
Posts: 2753

Hi datgirl,

Welcome to GRACE. I'm sorry to hear that your Mom is having such pain. It's often necessary to adjust dosages and medications in order to control pain. It might be helpful to use a combination of a fast-acting, short-term form of pain medication in conjunction with one which is longer-acting. Another possibility that worked well for my wife was a fentanyl patch.

You can watch the Dr. Harman's podcast on pain management (or read the transcript) here: http://cancergrace.org/cancer-treatments/2012/07/28/dr-harman-on-cancer…

I hope you can find a combination that brings relief, and that the trial drug is effective.

JimC
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Reply # - October 10, 2013, 07:25 AM

carrigallen
Posts: 194

Whether the experimental drug ends up working or not, her pain can (and perhaps should) be controlled now. As Dr West says, 'pain does not treat cancer'.

In this setting, ask for a visit with your oncologist specifically to talk about pain control. Or, seeing a pain specialist can be helpful. There may be more effective drugs and/or doses than what she is currently taking. It all depends on the type of pain, location, and other factors. Sometimes palliative radiation can be given during a clinical trial. Good luck.

Reply # - October 10, 2013, 10:22 AM

catdander
Posts:

Hello datgirl, Welcome to Grace. I very sorry your mom is in so much pain. Hydrocodone is a relatively mild narcotic pain reliever. I can't imagine why a stronger drug such as oxycodone, oxycontin or ms contin can't be prescribed to get her past this rough patch, the latter 2 of these 3 are slow release and usually show a significant benefit.
I wonder is Dr. Creelan was being gentle when he said, "her pain can (and perhaps should) be controlled now."

I hope your mom feels better soon,
Janine
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Reply # - October 11, 2013, 01:42 PM

datgirl365
Posts: 8

Thank you all for your quick response!! I should have started with you all sooner (I've just been lurking for a couple of months). The video is of GREAT help. Is there a video or discussion that talks about what happens when the trials stop working or when there is none left to try? My mom continually talks about "the end", even though her doctors say she isn't there yet. Any thoughts on how long the pain lasts? Is this pain ongoing from here on out, if the trials don't work? OR are there spikes of pain? Thank you again for the help. By the way, should I set this up as a new question?

Reply # - October 11, 2013, 08:20 PM

Dr West
Posts: 4735

It's probably good to start new topics/questions as a new thread, but we aren't militant about it.

There's no video about what to expect as patients decline, because it's really quite variable. Most often, especially if people are enrolled on hospice services, patients are comfortable most of the time. I would encourage you to look at some of the posts on the subject of pain control and hospice care, which can provide at least some background that might help. Overall, though, everyone has their own course that is distinct enough it's not really possible to say what to expect.

Good luck.

-Dr. West

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