Taf/Mek has stopped working - back to immunotherapy (again) (hopefully)

Posted By
cjm22
11/5/2018 9:22pm
View other posts by
Activity
Replies: 2

My husband's been on Taf/Mek since mid-April, and that worked brilliantly for about two months over the summer. His back pain came back terribly in early August and since then the docs have not been able to confirm the problem until the latest CT scan, which showed new lung nodules and a large liver lesion that weren't there 6 weeks ago.

His back and leg pain is clearly due to a soft-tissue lesion near his lumbar spine which is interfering with his nerves. They have done radiation there twice since April and the problem keeps returning. More radiation isn't an option, and of course Taf/Mek is now out too.

Our oncologist is looking into getting him on pembro and we might be able to private pay for him to go on ipi, too. It depends on what the province and our extended coverage are willing to cover for him. We're pressing for that since we think that's the best option still available to him.

He tried ipi/nivo in early April (just one infusion), but his cancer progressed so quickly that a week after the infusion, he was switched to Taf/Mek.

Hopefully this time the immunotherapy combo will work ...

It's tough since he's not really able to walk anymore. He spends most of his day asleep. His appetite is also decreasing.

He hasn't had a brain MRI for about 2 months, but I'm a little nervous what they'll find there, too. He's becoming more forgetful. I used to attribute that to his very strong painkillers (methadone and fentanyl), but after today's news, I'm not so sure. He has 3 very small brain lesions (last we saw, anyway).

Thanks for all your help and support. I don't post often but I think of you guys all the time. I've found some emotional relief posting in a private young adult caregiver group through CancerCare.org so that's where my angsty, non-medical posts end up a lot of the time.

Sorry that you and your husband have been dealing with all this.  Hopefully, immunotherapy will be helpful this go round!!!  Perhaps Ed (I'm assuming you're Canadian??) may chime in with info about more locally available covered options for you.  Glad you have a place to rant.  Feel free to rant here as well if you need another space.  Hang in there.  Care givers like you get us through.  I wish you and your husband the best.  Celeste

Sounds rough! Wishing you hope and strength and lots of support. Glad you're reaching out.

Lisa

October 2017 primary scalp WLE; SLNB removed and revealed two positive nodes in neck. July 2018 scan shows positive nodes same neck location. August 2018 partial neck dissection. Stage 3C. September 2018 started Nivo.