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Severe pain eating 7 weeks post-RT
Hi all,
First-time poster here. 40M, stage 1 P16 / HPV+ tonsil cancer. Completed 33 fx, 70 gy proton radiation about 7 weeks ago. No chemo.
Problem is, the treated back corner of my mouth and soft palate are set off into a fury without much provocation - 8-9/10 pain that leaves my nose running and eyes watering - think hot nail being pounded through the mouth. Eruption of clear painful blisters. It all subsides in 12 hours. Things that have set it off include a green smoothie with coconut water and spinach, Boost VHC drink; Orgain protein drink...to name a few.
Anyone else have similar experience? Did it get better? I'm trying to subsist on a diet largely of neutral dairy products, oatmeal, and bland soup. Hardly enough to sustain myself because "real" food is either too hard to eat or the taste disagrees with me to where I can't eat it.
Oncology team where I was treated (a global center for cancer) does not seem to care; it seems that unless I am found to still have cancer then I am effectively on my own to manage this.
Very much appreciate any advice or shared experience!
Tom
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@roblem I received 70 gy, 35 treatments and it was proton radiation.
@roblem I was "speaking" to ranchroad about the amout of gys specifically applied to my salivary glands. Since the 70 gys are not delivered evenly throughout the treatment area I am questioning my radiology oncologist regarding the dose my parotid, sublingual and submandular glands received.
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1 Reaction@roblem By the way, thank you for posting about your experience with acupuncture stimulating your salivary glands. I plan to investigate that in my area.
@sandy8043 My husband is about to start 7 weeks of radiation and possibly 3 chemo sessions. How did your chemo affect you? I'm trying to anticipate how he may feel,very scary .
@lizzyj58 Hi. You might ask your husband's treatment team if they plan on 3 biweekly 100 mg cisplatin chemotherapy treatments. And if so, why not weekly 40 mg cisplatin treatments. I had the latter. The side effects are significantly less with the weekly lower dose treatment. The research suggests that the key in the chemotherapy's success is to get to a minimum of 200 total mg. If he can tolerate more, then that is better.
My chemo made me nauseous but was completely controlled through antiemetics. I was also very fatigued which got worse over time.
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3 Reactions@metsgirl Thank you for that suggestion, I will ask the oncologist when we see her next week. My husband had the tonsil with the tumor removed, clear margins. But the cancer is in adjacent lymph nodes, don't know how many. I feel like 35 radiation treatments as well as chemo is a lot but we have to trust that his doctor knows best. My husband's is HPV positive 16, apparently this has a very high cure rate , still it's very scary. Thank you so much for replying to my question.
@lizzyj58 You are more than welcome. I was/ am HPV 16 positive as well. And yes, HPV positive patients generally respond well to treatment and have high cure rates. Trust your doctors. Best of luck to you and your husband!
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3 Reactions@metsgirl Thank you so much!
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2 Reactions@lizzyj58 Was there anything that helped with the side effects? I suppose my husband will have a sore throat,possibly blisters! Maybe even a sore neck where the radiation will be aimed at!