Welcome Elisabeth. I'm sorry for all your troubles, and understand your concern of further debilitation being I had, still have the same concerns. I'm blinded in one eye from chemo, was bascally paralyzed from the waist down, and coud not walk for over 10 months, hospitalized for 6 months, plus others I still have. The good thing was my initial treatment with 5 days of high dose chemo killed all my cancer in the tonsil and lymph nodes, but that does not last, as I found out in the 8th month, but apparently responds well.

My new oncologist would not do chemo for my 2nd recurrence. I only had radiation, bilaterally, because of a 3rd suspect node on the right side, plus bot, Vallecula initially lit up the PET, but not biopsy. They may be able to radiate on one side, spare salivary glands, even reduce dosage being its HPV positive?

For other later recurrences, I had 8, but had two treated in one shot, they would not do Cisplatin again. All my consultations said Erbitux, which was easier, and had Taxotere with that. The Taxotere was cut off midway due to neuropathy, but the Erbitux was still doable. For my last treatment, I did Proton Therapy, and carboplatin. Proton therapy had lesser side effects than IMRT, and the carboplatin was the easiest of them all, for me, but everyone is different.

So there may be ways to still have radiation or Chemoradiation with less toxicity, which can be further discussed with your doctors, and if they thought you could not handle further treatment, it wouldn't be recommended.

Good luck with everything.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs