Welcome Steve,

The main thing is you finished treatment successfully, and have 3 months behind you, and assume found stable, NED. I haven't really heard many say remission, once in a medical journal saying dormant, with this cancer, except a few pther patients or caregivers, but we know what you mean and feels good! You actually had what is considered the "gold standard", at this time, for head and neck cancer, and yes, there's some alternatives that are "just" as good, but Cisplatin is still preferred, and proved to most successful with radiation or other combinations. You could have had weekly lesser dosage infusions, but their said to have lesser kidney toxicity, but more mucocitis. Then there's Cisplatins relative, Carboplatin, which I had too. Anyway, all chemo's have toxicities based on the type of chemo, combination with another chemo, the dosage, the speed of infusion, and frequency of infusion. These can be adjusted for various reasons such as reducing dosage, speed of infusion with hearing changes, etc.

Chemo and radiation have acute, less than 3 months, and long term toxicities or side effects lasting longer than 3 months. chemo side effects usually resolve after a few months, although I've had some longer like optic, kidney, neuropathy, hearing and tinnitus, Radiation is the gift that keeps giving. Some toxicities can last or appear months, years after treatment.

Some of ghe things you mentioned we all have dealed with, some which may resolve over time, can be helped to some extent, sometimes,, with some, and sometimes there is no change or it is slow. As it's often said, it's a marathon not a sprint. I'm almost 7 years out from my first treatment, although I had others, I still have side effects tracing back to my first cancer.

Each of the items a you mention, can take pages to discus or a laundry list of ideas, and ChristineB, our administrator, is very knowledgable, and good at this, who I'm sure will be by to offer advice as well as others. Until then I suggest you read the treatment compljcation section on OCF, and others, which is the most compressive around. I can come back to discuss my thoughts, fill in any blanks, after the election lol, but think I wrote enough at this time before I lose everything on my iPhone or fingers drop off.

http://oralcancerfoundation.org/complications/

I hope this helps!


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