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Keep on keepin on

Keep on keepin on

Posted By
4/12/2019 9:46pm
Replies: 5

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. 


cjm22 - (4/29/2019 - 12:08pm)

Thank you, Ann! The scans shows nothing unusual in his brain (beyond the couple stable mets). The neurologist thinks they were probably a type of seizure. She's increased his anti-seizure meds. The upside is that those additional meds have also seemed to bring his neuropathy under more control, too. No episodes in about two weeks now so hopefully nothing else will happen ...

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

cjm22 - (4/29/2019 - 12:06pm)

Ahh Tony I didn't see your reply until today! And you probably won't see this one! I wish this forum had a notification system. (Does it??)

Sounds like this trial didn't work out but you're onto another one considering your latest post. I'm so glad you've found something else that's promising. This disease is so crazy! Maybe you're feeling nervous to start a new thing but I have a good feeling for you.

I'm a software developer (officially just finished my last exam a week ago and I start work in a month). Hubby has always loved computers so he's going to try learning to code while he regains strength. He used to be in academia but it's not possible for us to move around for his career any more, and becoming a professor normally means you've got to move to where the jobs are ... So that's out.

I hope we run into you again someday!!!