March 2020
1 Kudo
Hey Wombat - oh you poor thing! The sore skin is just another awful side effect, I found that slapping on sorbolene and white paraffin cream 5+ times a day really helped me keep my skin from breaking and blistering too much. It was technically 6 weeks and 3 days, 33 sessions. My oncologist basically just said that was the dose of radiation I required and because of the sensitive nature of the area, 40% of face, right side of neck, back bottom right quarter of head & shoulder, the dose had to spread for a bit longer to minimise damage caused. I'm so happy that you are only 4 sessions away from being done! I was so emotional and happy on my final day of treatment!
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March 2020
1 Kudo
Hi, your original post was so long ago, you probably won't see this. I too, have adenoid cystic carcinoma but not in the same location as you. I had a tumour grow in my submandibular salivary gland in my neck. This was removed with surgery and 7wks of radiotherapy. Not fun being the one with the rare cancer is it! Especially when a lot of your questions are met with shrugged shoulders because they have never had enough funding to know enough about it. One Oncologist basically told me they never thought they'd see an ACC case after writing about it in Uni. If you read this, I hope you've recovered well and are blissfully ignorant about all the woes this disease caused you! <update - have only seen original post since posting this>
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March 2020
2 Kudos
Hey guys. I'm just shy of 6 weeks after finishing radiation to both my head & neck. I had 33 sessions, 7 weeks worth. I have/had adenoid cystic carcinoma. During treatment, my taste changed as I was warned. Taste changed hugely and definitely decreased a lot. I have never completely lost my taste. Last week, I would have reported having about 40% taste compared to usual and still had smell which never seemed effected. In the last 2-3days, my smell and taste has completely gone. Not even 1% of either remains. Has this happened to anyone? I called Oncologist, waiting for a call back. Have follow up MRI on Friday so they'll likely advise me to wait until MRI results but wondered if anyone has ever experienced the disappearance this far into recovery? Thanks 🙂
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