Proton Therapy OHSU

[gbly]

ColleenS,
Thank you and really glad to hear that I have hope on the long term.  I have an appointment Jan with a facial specialist.  I am going to ask about botox or acupuncture, so we will see what they recommend.  Probably something I am not even thinking about.  I will keep you posted.
This forum has been priceless for helping get to decisions, so want to keep paying forward.
Thank you all and have a great holiday.
v/r GB

[gbly]

Good evening all, I wanted to pass along my latest update.

Seems I have synkinesis on my radiation side.  Was able to get in with the doctors and they have recommended and administered botox to calm my face and get my eye to be more open.  I am 2 days into the botox and I can already see and feel a difference, but max results seen 3 -4 days.
10 shots in neck to relax the banding - now smooth
1 shot into chin to relax the dimpling in chin, still slight dimpling, but better and still not to the 4 days.
1 shot in upper lid and 1 shot in lower lid to help keep the eye open.  The volume was minimum to ensure no dry eye.  But might happen, but have had dry eye for a good part of this, so ops normal.
1 shot in my check and still tight so might need to get a little more, but not going to worry about it until the next dose.

My biggest thing that I wanted addressed was the eye not staying open.  I was very conscious of it and now much better.
 
I also start PT for my face in a few weeks and with the combo hoping to re-train my muscles.  I also have one more treatment of botox in May so I will keep you all posted.

Good luck and great option if anyone is looking to even out their face.

[donjehle]

Thanks, gbly, for continuing to update your journey.  That is really helpful for all of us in the ANA community.

I admire your courage for everything you have gone through.  Let us know how it goes with your eye and face.

Best wishes for your treatments and therapy!
Don

[gbly]

Thank you Don, but I would say we all are.  Love this group and it has been very helpful for me.  If it can help someone I am glad to share.

I just got botox and have the few days to let it settle in.  It is funny, the smile is better, but the face frozen. hahahaha.  the interesting piece is my AN side eye would not open all the way, post botox, wide open and does not blink with the non-affected side.  But I like the results better than not having the botox.  I start PT in a few weeks and I am hoping between the two I get some good balance.  Doctor thinks this or maybe one more botox treatment will be all I need as the PT starts to work.  Fingers crossed.

I am getting my 1.5 year MRI next Wednesday and will keep you all posted.  the previous 6 month was very positive it was dying in the middle, I am hoping to report all dead now!

Good luck to all and have a good week.
GB

[gbly]

Good evening everyone.
My apologies for not updating after my second MRI.  I had great news and the tumor continues to die.  I have one more MRI on the yearly basis, as long as everything continues to progress as it is.  The hope is that 2023 will show all dead, and then the MRI's will shift to every 2 years.

Facial issues:  I have had a second round of botox and the results have been very good.  The only interesting pieces is that I definitely don't blink in unison.  The AN side is kind of frozen but it is the resting face that I was going for.  I have started to make it a game to see who I can freak out with the crazing blinking....hahahaha what else can you do?  But to be serious not that bad, it is a lot in my head.  The hubby says he doesn't even notice it...but he has to say that. 

My big challenge is I have moved and will be trying to coordinate all of the appointments with OHSU, now Dr. Murphy, she is wonderful too!  But I am getting close to botox again, but I will see about maybe seeing about a different or reduced shots to see if I can work through some of the not being able to blink in unison.  Will keep you all posted.

Again over all I will say the only thing I would have done different (if I knew then what I know now) would do the radiation sooner.  I would have insisted on doing the radiation instead of WW, but normally they are not rapid growth.  So really would have done nothing different, but it is fun to talk a good game.

I just hope this helps someone work through the decision process for themselves.  Good luck to you all and keep us posted.
v/r GB

[donjehle]

Thanks for the great update, GB!  I love hearing about the tumor dying.  That encourages all of us!

And I love your sense of humor, especially making a game of freaking out other people with crazy blinking!

Be sure to let us know about your experience with the botox.

Thanks for sharing!
Don

[gbly]

Good evening all,
I just wanted to post that I had my 3rd MRI (about 2.5 years sense radiation) at the end of January.  All is going well and tumor is still on track to be dead.  Dr. Blair Murphy said 97% dead and 94% that it will not come back.

I can't stop recommending OHSU to everyone.  They have been wonderful.  Dr. Jaboin was also at OHSU but has moved to Oklahoma, and he is amazing too. 

Keep the faith and good luck to all.
v/r GB

[mwatto]

Wow! Thats incredible! So happy for you! Waiting for results on 4th MRI...