Mally Posted September 4, 2019 Share Posted September 4, 2019 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 ? Link to comment Share on other sites More sharing options...
Tom Galli Posted September 4, 2019 Share Posted September 4, 2019 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 Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 4, 2019 Share Posted September 4, 2019 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 Link to comment Share on other sites More sharing options...
ale Posted September 10, 2019 Share Posted September 10, 2019 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!! Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 11, 2019 Share Posted September 11, 2019 Hi Ale- All is going well for me, thanks for asking! The EGFR medications are typically very good at treating plural Mets. Have hope for you Mom. Link to comment Share on other sites More sharing options...
ale Posted September 12, 2019 Share Posted September 12, 2019 Hi Michelle, very very well for you!! Do you know some One have remission on pleural mets?? Thanks Link to comment Share on other sites More sharing options...
ale Posted September 12, 2019 Share Posted September 12, 2019 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 Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 12, 2019 Share Posted September 12, 2019 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 Link to comment Share on other sites More sharing options...
ale Posted September 12, 2019 Share Posted September 12, 2019 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 Link to comment Share on other sites More sharing options...
Mally Posted September 13, 2019 Author Share Posted September 13, 2019 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 .. Link to comment Share on other sites More sharing options...
Mally Posted October 3, 2019 Author Share Posted October 3, 2019 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 Link to comment Share on other sites More sharing options...
Tom Galli Posted October 3, 2019 Share Posted October 3, 2019 Mally, Simply wonderfull news! I do love the sound of NED from down under. Time for some shrimp on the barbi? Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 3, 2019 Share Posted October 3, 2019 Whoo hoo Mally! Great news, so happy for you! Time for a Vegemite sandwich!! Michelle Link to comment Share on other sites More sharing options...
Mally Posted October 3, 2019 Author Share Posted October 3, 2019 Tom I'll skip the shrimp and put a snag on the barbie....lol Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted October 3, 2019 Share Posted October 3, 2019 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 Link to comment Share on other sites More sharing options...
Mally Posted October 4, 2019 Author Share Posted October 4, 2019 Hi I think that would be a good thing to have someone to talk to that understands and to support and be supported Link to comment Share on other sites More sharing options...
Steff Posted October 4, 2019 Share Posted October 4, 2019 Awesome, congrats! Link to comment Share on other sites More sharing options...
PaulaC Posted October 7, 2019 Share Posted October 7, 2019 Awesome news congratulations! Link to comment Share on other sites More sharing options...
Mally Posted January 3, 2020 Author Share Posted January 3, 2020 Hi everyone I'm just wondering if anyone on opdivo treatment are having pain in joints like with me its shoulders and neck and at times into my arms and collarbone area ? My dr says it's an inflammatory condition caused by opdivo and the fact the pain moves around and comes and goes during the day hes confident that's what it is ...I've had scans and waiting on results next week but have any of you experienced pain in different areas and your dr says it's the inflammatory reaction to opdivo ? Link to comment Share on other sites More sharing options...
Rower Michelle Posted January 3, 2020 Share Posted January 3, 2020 Hey Malloy, I was thinking of you this morning where the newspaper is reporting about those horrible fires. Your report of immunotherapy side effects is quite common. Take a peek at the postings in the Durva feed @DFK wrote a really nice cheat sheet of common side effects and how to manage them. Congrats on the three year mark!! Many more to come. Let us know how the scans turn out. Prayers for continued NED. Michelle Link to comment Share on other sites More sharing options...
Mally Posted January 3, 2020 Author Share Posted January 3, 2020 It looks at times like the whole country is on fire and the sad part is that so many have been deliberately lit and I hope these people get punished severely because hundreds of houses have been lost and over a million animals have perished so it is a sad time for Australia at the moment ....thankyou for thinking of me .. Link to comment Share on other sites More sharing options...
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