Keep on keepin on

Posted By
Anonymous
4/12/2019 9:46pm
Activity
Replies: 3

Things are looking up right now! My hubby's pain is almost totally gone -- he doesn't take any opioids any more, just the occasional naproxen for when the tingling in his left leg gets too bad. He started physiotherapy this week to see if he can regain some of the muscle and flexibility he's lost over the past 9 months of not being able to walk much. He even signed up for a coding workshop in a couple weeks since he's thinking about what he might want to do for work someday!

So that's all awesome!!

Less good: he has had two episodes of scary confusion. The first one he behaved very strangely for about 20 minutes before snapping out of it (couldn't figure out how to put on clothes or understand what I was saying, etc.). The second one he was unable to speak for about 20 minutes -- he just kept saying gibberish and word salad instead of actual coherent sentences. The second time we went to the ER, they did blood work and a CT scan of his brain, and they said everything looked the same (he still has a couple brain mets but they're small and stable right now).

Neurology referral to figure that one out!

But other than that all is good <3 Hope all of you are doing well too!

cjm22 - (4/13/2019 - 3:49pm)

not sure why anonymous! it's me, cjm22!

marta010 - (4/16/2019 - 8:59am)

Hi - So happy to hear the pain is almost gone!  The PT should be very beneficial and help him regain his strength.  I hope you get in to see the neuro soon.  My husband had the same type of neuro episode - unable to find words followed by gibberish - caused by a brain met/edema.  Initially treated with steriods, eventually followed by a craniotomy. 

Ann

GeoTony - (4/16/2019 - 5:07pm)

Hi Guys

Good to hear the pain is going, going, gone, good signs that youre turning a corner, who knows whats round that corner, I'm intregued by the coding, my background is GIS, computerized mapping and python is a major languge in that and many other fields.

I didn't get onto the nktr-214 trial, they were concerned about my initial reaction to Ipi a couple of years ago, I only manged 3 out of 4 doubles, so I was filtered out.

Blood was drawn today, next Tuesday I have my first meeting in over a month with our favourite oncologist  to see where we go from here and she has my POG/DNA results to discuss.

hope you guys have a great Easter

 

Tony

 

Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance