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← Return to Severe pain eating 7 weeks post radiation: Any tips?
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Severe pain eating 7 weeks post radiation: Any tips?
Head & Neck Cancer | Last Active: 12 hours ago | Replies (59)Comment receiving replies
@ranchroad Thanks again. I did ask for the DVH. I will ask again. After you posted on this I did some research of my own into the histogram itself and studies on the dose volume and saliva flow related to each gland. I am a recently retired university professor with too much time on her hands. So, I too, have a tendency to dig into things!
Unfortunately, I was treated bilaterally, one lymph node on each side was affected. So, that explains my more severe xerostomia. I am hoping I can regain some saliva flow. But who knows?
Replies to "@ranchroad Thanks again. I did ask for the DVH. I will ask again. After you posted..."
Hi @metsgirl
Congrats, I too recently retired in at the beginning of the year.
I had 35 rounds (7weeks) of Photon radiation for a total of 70Gy and 3 rounds of Cisplatin chemo for tonsil cancer back in 2008 but no surgery and to help with the brutal dry mouth and after my research I tried ELECTRICAL STIMULATION ACUPUNCTURE in 2015 which was offered at my cancer clinic for head & neck cancer patients. I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and has been a non-issue even with only one working salivatory gland, and I don't have to carry a water bottle with me either to this day. Since then, I believe there are other additional avenues like sprays to help with that.
I got this from my other cancer group SPOHNC and it mention AQUAx2 which is a clinical research study for people with moderate/ severe dry mouth (xerostomia) caused by radiation therapy purpose is to assess the efficacy and safety of "gene transfer" study drug called AAV2-hAQP1.
In addition, I didn't have this available to me but others on this support group site have mentioned “Xylimelts Stick-On Melts” you can buy off Amazon and the box of 40 was less that 10 bucks. People say they really work, and they sleep through the night. And their daytime dryness is much better also. You should research using for extended period of time effects. Also, Biotene spray is effective long time after 2 or 3 sprays! And more recently there is a Aquoral Protective Oral Spray- Dry Mouth Relief which is more than temporary relief of dry mouth. Or a prescription of Cevimeline.
Hope this helps for the dry mouth.
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@metsgirl Sounds like you know what you’re doing. Hopefully others will read this exchange and be educated and helped in some way. It has really helped me to know that I am not alone with this bizarre symptom.
And hope you get some slivers of good news from your DVH, or at least clarity on what to expect