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Skiffin16 said:

Schweeeet...
Like mentioned, sweet took the longest for me also.

Nearly two years before it started coming back with any consistancy...now at nealry three years, I'd say it's 100% back.

Saliva is nealry 100%, just a little dry at night during sleep. Taste is pretty much back 100% also.

Best,
John

Taste and tolerance
After 16 months post treatment sugar tastes to me like seawater. I am unable to drink wine. Perhaps the lining of my mouth is still tender. The acetic acid in wine just dries me out badly. I can drink scoth and beer. In fact, 40% alcohol drinks stimulate my saliva. My Dr. tells me my saliva is gone for good (or actually for bad). The radation also fried my thyroid gland and now I have to take pills. Another lifetime gift of the treatment, which was more like a mistreatment.

Those who love me are very happy that I am not dead yet but occupying my body is not as fun as it used to be. One thing is certain, my experience with treatment was so severe (21 days in intensive care after 2 cysplatin infusions, loss of 50 lbs., no food by mouth for 6 months accompanied by incessant vomiting, nerve damage, teeth damage, and more...) that I will not seek treatment again if the cancer were to reoccur. Constant use of oxycodone for over six months left me addicted to the medicine but I can see why. The stuff is wonderful. Took me several weeks of no sleep and suffering to wean myself off the stuff. If cancer were to return I will surely collect a good supply of the stuff.

Kent Cass said:

Sergio
Sorry to hear you had such a rough go of it. Everyone is different. I had two 2-pump chemo sessions with Cisplatin and 5-FU, was too sick for rads in week #5, and started #6 in the hospital for 4 nights, but turned the corner while in that hospital and it was all systems go from there on, with the last rad in April of 09. I was able to return to regular eating some 5 months later, though taste had changed. Sweets took the longest time, but oh do I enjoy the spicey foods- a lot. Not sure about the alcohol thing, though, as I don't drink, and it's kinda common knowledge that alcohol and smokes are a major contributor.

Was wondering where you are, and went thru treatment- a major center, or small town? For you to end up in the ICU- does not sound like your med team did their job very well, to say the least, as it's their responsibility to get the Patient thru it all without such an ICU stay.

Hope and Pray things get better for you, and C stays permanently away from you.

kcass

Treatment location
KCass I had my treatment at the Winship Cancer Institute of Emory Uinversity in Atlanta. I live 3.5 miles away. Why are you curious?

Pam M said:

Hello
Congrats on your survivorship. I was diagnosed stage four base of tongue cancer a year before your diagnosis. Sweet came back for me fairly quickly. Like many, chocolate and ice cream took much longer. for a while, chocolate was too overwhelming when it came back. I'm with you on not loving the side effects/lingering changes from rads/neck dissection. On my ungrateful days, I whine.

"side effects"
What a term! It is kind of like: "pre-owned" or "non-alkaline" or "pro-choice". We seeme to not want to use the correct word as its meaning is too real. "used", "acid" or "kill" are harsher words. There is no "effects" on-the-side, it is actually permanent damage to systems and tissues of your body.

"modern" medicine has yet to discover a treatment for cancer that targets the bad cells. as an alternative they, poison and irradiate large areas of your body with noxious chemicals and semi-collimated x-rays that damage or destroy many uninvolved, healthy tissues. Nano technology is being tested to deliver poisons directly to the cancer cells reducing significantly peripheral tissue damage.

Pam M said:

Hello
Congrats on your survivorship. I was diagnosed stage four base of tongue cancer a year before your diagnosis. Sweet came back for me fairly quickly. Like many, chocolate and ice cream took much longer. for a while, chocolate was too overwhelming when it came back. I'm with you on not loving the side effects/lingering changes from rads/neck dissection. On my ungrateful days, I whine.

Cancer location and HPV involvement
Pam, seeing your picture reminds me of a story to tell. At the end of 12 weeks of treatment, when I was at the bottom of my heath dip, I went to see my ENT surgeon. He said to me "I came here this morning to push you to surgery" then he (I am guessing) must have revisited my end-of-treatment scan and decided not to slice. At the time of diagnosis, I had a 4.5 (or was it 6.5?) cm cancerous lymph node in my neck just below the jaw. I had never noticed it and did not bother me in the least. All the symptoms I had was perdsistent sore throat that only bothered me when I drank OJ or wine.

While the radiation totally eliminated it, necrotic tissue could still be seen in the CT scan. The ENT Dr. told me that removing it was risky. That a nerve that controls the arm that passes through that area can be adhered to the dead cancer and if cut, the shoulder drops and you cannot lift that arm. In retrospect, I am glad my dr. decided against the surgery because at the time I felt so bad, that death seemed like a welcome occurence. Adding another "side effect" to my "treatment" was not something I was willing to do.