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Mally

Mally

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Hi all my fellow survivors I've finished radiotherepy on a lymph node and it was a 5 day treatment which all I can say is thank God it was only 5 because I dont know how I wouldve coped with more because my throat is very painful to swallow and I have a dry cough and fatigue is noticeable whereas when i was just getting opdivo i felt like there was nothing wrong with me and I'd had radiotherapy 7 yrs ago on my leg for 5 weeks for a sarcoma cancer and felt no side effects then except a sunburnt like leg and the set up for radiotherapy on the side of my neck was very uncomfortable with a mesh screen type thing moulded to my face and attached both sides to the bed and it's so tight that i couldnt move my eyes and my mouth was just parted but if a trickle went down my throat i wouldnt be able to turn and cough and that's what caused anxiety.....one more thing i was told today that i could do opdivo monthly instead of fortnightly but my choice so just wondering if any of you guys have gone onto monthly ?

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Mally,

Great news on completing radiation. I think your throat discomfort should leave soon. Just think of the discomfort to the cancer cells caused by the radiation frying them!

I wouldn't know the optimal Opdivo treatment interval.

Stay the course.

Tom

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Hi Mally,

These days all roads lead to Facebook. You might search for an Optivo group.  Otherwise there’s a group here in the US GO2Foundation.com or the Lungevity Helpline that might lend some insight. They might not be familiar with the protocols down under however it’s a least a reference point. You might also Google the NCCN Guidelines  

Keep is posted! 

Michelle

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Hi Michelle how are you?? Sorry for my english...do you know some One have radio on pleural mets?? My mother is EGFR+ and only pleural mets...I'm afraid... thanks and kiss from Italy!!

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My mother have only pleural mets and I hope that she Can be Ned one day....in the last PET there is a parzial remission with Tarceva from dicember and his markers CEA in the Blood is 5... sorry for my english...do you use the markers for see the trattament is good?? Many kiss from Italy for you and all!!!! Thanks

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Hi Ale,

I’m sorry not to be familiar with the CEA markers. With ALK I’ve read that CEA levels aren’t reliable. All these mutations are a little different.  I hope your Mom is feeling better! 

Michelle

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Ok Michelle, thanks; my mother in this time have a very good performance. She is our babysitter for my two children in every afternoon in the last time, drive every day his new car and she is our of house for many time...many many kiss from Italy!!! And thanks for your time for answers

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Tom you were right that my sore throat didnt last too long only about 2 and a half weeks which I'm really pleased with so thanks for the confidence you give ..

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Hello everyone I just want to let you know that I had my 44th dose of opdivo yesterday and got my scan results which were NED and i feel so happy. Tom you were right when you said the radiotherapy would fry the lymph node in my neck and it did just that ...I start on monthly infusions now so that will feel more like a normal life than every fortnight ...I wish everyone on here the best of luck and keep positive because treatments are getting better every day 

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Hi Mally!  LUNGevity has LifeLine, which is a peer-to-peer mentoring service that matches up patients who are going through similar treatments.  Here is more information if you would like to be connected with someone on a similar treatment path. https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring

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Hi I think that would be a good thing to have someone to talk to that understands and to support and be supported 

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