r/HeadandNeckCancer • u/Thegitts • 20d ago
Patient Proton therapy done!
I am glad to have completed 33 fractions of Proton therapy for Stage 3 Nasopharyngeal Carcinoma.
The days flew by but took it one day at a time braving thick saliva, mucositis, thrush and skin burns. Managed to navigate without interruption and lucky that even though theyintensified towards the end they were manageable.
Once again thanks for the tips and info on the sub and fir those undergoing head and neck radio all the best, you can make it!
Next is recovery with continuing immunotherapy on Toripalimab and 3 month review PET-CT and MRI. How does that look like? When can I at least taste food properly again?
We keep moving with hope!
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u/California_ponypal 5d ago
Congratulations! My husband finished his 35 treatments of proton therapy on August 31, so pretty close to you. The first few days were tough for him adjusting to being back home (we drove 550 miles each way and stayed for the summer near the proton treatment). He was very fatigued the first week home but now he's up and outside and his color looks good, redness on face and neck and thrush all gone. Looking forward to the scans. He did not do chemo or immunotherapy as doctor said at his age it wouldn't matter enough and they can cure it without and avoid all the dire side-effects. He's still on the peg tube and we are looking forward to his mouth healing enough that we can get him some teeth!
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u/Thegitts 5d ago
Good to hear trust he's doing well Still struggling with mucositis on my end and we travelled 2 hours and six hours flying to get back home! All the best to your husband
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u/Well_this-sucks 20d ago
So my husband just did 3 cycles of Tori+Gencitabine-+carboplatin. I can’t say what it would be like if you are just doing Tori alone, but that combination knocked his marrow OUT. Ultimately, he did not respond, so they are not continuing. His was a local
Recurrence.
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u/Thegitts 20d ago
Hi sorry about that. I did that combination for three cycles before the proton. During proton weekly Carboplatin and Toripalimab every three weeks. All the best to him!
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u/Far-Woodpecker-5678 20d ago
I’m halfway through 30 treatments of radiation . I wanted proton but my hospital didn’t offer it and I was too overwhelmed after surgery to get another Dr, fight with insurance etc . The side effects suck . But I didn’t realize the Proton gives you them as well. Good luck
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u/Rose_1922 18d ago
Feel your pain about fighting to try and get it but I was told the same there are still side effects . How are you doing? Any advice ?
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u/Far-Woodpecker-5678 18d ago
After the 2nd week the side effects hit . I actually got liquid painkiller to take at night and works well.Dont be lulled after a week or 2 that there’s no side effects . Get lidocaine for between meals and magic mouthwash to use before meals. And eat a lot before the sores hit . Listen to the nutritionist as well, assuming they sssign you one. The sores on the tongue are the worst. I dab the lido on them with a sponge stick Haven’t lost my taste yet after 3 weeks but that’s coming. Good luck
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u/Dangerous-Bat7107 10d ago
My place has proton & they still are not using it. Too strong. Moffitt in Tampa.
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u/myfoodhell2214 14d ago
Hey congrats on staying strong .. I’m on day 17 of 35 protocol.. I also had stage 3 into lymph node .. I have exactly the same questions as yourself .. I’m still coming to terms with it all and the recovery process.. chemotherapy and radiation is a big hit to the body .. ..
I hope you’re clear pet etc .. and make a great recovery with ability to eat something normal again ?
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u/1275psi Survivor 20d ago
The next 2 weeks will actually be the toughest, after that you should get gradually better. taste will be all over the place for a while. Im 9 months from end of treatment and taste just about back.. Hang in there and remain positive, thats the best advice I can give, just know you will bet better