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Summer Update

This topic has 3 replies, 3 voices, and was last updated 6 years, 10 months ago by Sharon93065.

Post

- June 25, 2018 at 2:48 am
- Quote
Ridingaroundwith27Jennifers
Participant
Hi All,

My latest MRI has come back stable. They are still watching as they can't tell if the site has increased brightness due to normal healing, radiation injury or tumor regrowth but they were happy that it is stable as the last MRI showed increased swelling around the site.

I've also decreased my Keppra dose from 750mg to 500mg with no new seizures. It seems like a little thing but it's actually a huge thing for me.

Finally, I have to confess that I had such a miserable reaction to the oral contrast after my last CT scan that I cancelled my 2 month scan. I have rescheduled and go July 5th.

I know these procedures are important but I've got procedure aversion. I'm still on nivo every two weeks. We discussed moving to the 480mg dose every 4 weeks but I'm nervous I'll have increased side effects so I'm sticking with the 240mg every two weeks. At least the infusion time is down from 60min to 30min.

I'm still tired and still working on getting the function back in my right foot. This journey has changed me but I feel like I'm one of the lucky ones.

Wishing you all a great summer and thanks for all your support.

Jennifer

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Replies

- - June 25, 2018 at 4:22 am
  - Quote
  jennunicorn
  Participant
  Yay to stable AND decreasing keppra! Sending good vibes that the CT goes well and you don't have a bad reaction to contrast this time. Happy summer 🙂
- - June 27, 2018 at 6:28 am
  - Quote
  DZnDef
  Participant
  Congratulations on stable! I'm on 2000mg of Keppra per day so I am envious of your low dose. Glad you aren't having seizures (those are no fun). I hope you handle that delectable contrast beverage just fine for your next CT scans. They let me choose my flavor. I go with either banana or mocha. Good luck. You can go a long way with stable.
  
  Cheers!
  
  Maggie
- - July 7, 2018 at 5:20 am
  - Quote
  Sharon93065
  Participant
  My oncologist is keeping me on Opdivo every two weeks, due to the reaction with my liver due to the combo treatments. Had brain MRI 5 days ago, praying for good results! Hang in there girl, you are very young and have your whole life ahead of you. And thankfully a long one. Me, I'm 71 and didn't think I'd still be here today. Stage 4 metastatic melanoma. Thank you for all your help. Sharon

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