How long have you survived
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Another 12 year plus Survivor
Just checking in offering support.
I too was Dx in 01/2009 with STGIII Throat Cancer, HPV related. Nine weeks of Cisplatin, Taxotere and 5FU, followed with seven weeks of Carboplatin and 35 dailys rads. Clean and clear since, but a lof of that time with paranoia of the expereince.
NEGU ~ Never Ever Give Up
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4 and a half years
Stage 4b (old staging), right tonsil, one large lymph node, 35 radiation blasts and 5 of 7 Cisplatin infusions. (had to knock off the Cisplatin early. Yikes)
My last regularly scheduled PET scan is scheduled for October 2021.
Thanks to God and all the men and women who did what they did so I can claim that 4.5 years.
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Metastatic Squamous cell carcinoma HPV 16 +, right tonsil, right neck side lymph nodes. Diagnosed June 2021. 7 weeks/35 treatments of radiation (70 grays on one side, 56 grays elsewhere), 6 weeks of chemo. Two, one-week hospitalizations (one for a massive abscess in the lymph node that nearly killed me and the other one for going off the cliff due to the treatment and which nearly killed me) and a stomach tube. PET scan Jan. 21 2022. Results: NED.
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13 years on 12/30/2021. Lived to see the Cubs finally win a World Series, and took care of my Dad as best I could until he went into Hospice- which has left a huge void in my life as the last of the immediate family- so it was definitely worth the side-effects that continue.
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12 years out last month. cancer woes doing good treatment woes not so good
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Still NED, including a negative on the NAVDX test and multiple CT scans. Now more than 2 years out since last treatment on Sept. 17, 2021. The side affects of this treatment are little short of barbaric. I still don't have much of a sense of taste or much saliva although both are improved from a year ago. Still suffering from thick mucus in the throat, requiring that I clear my throat throughout the day and which make swallowing any medication in capsule form problematic. All my teeth required crowns, as the radiation stripped the enamel off the teeth.
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Rer58, welcome to the CSN H&N discussion board.
I hope your side effects are not severe. Feel free to hang around and give us some details of you cancer and treatment.
Mpennak, congrats on being over 2 years out and having all the wonderful clear tests that keep showing NED (No Evidence Of Disease).
I am sorry you have such difficult side effects which seem to be lingering on after treatment longer than normal, but every person and every case is different so hold out hope for continued improvement.
Teeth are a big issue after treatment and many of us have problems and more maintenance as you do.
You seem to have a very positive attitude though and are moving ahead with life, more power to ya.
Take Care, God Bless
Russ
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Amen Dean 54 I thank and praise God for the many Blessings I have received from him of excellent doctors and clinicians, caretakers and so many involved in my care too numerous to remember them all, but God knows who they are. We are sincerely Blessed and given a new lease on life.
Wishing You the Best
Take care, God Bless
Russ
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A follow up on my treatment. Diagnosed Squamous Cell Carcinoma. HPV16 related. Two enlarged lymph nodes in left neck. Negative CT- PET. My left tonsil was removed in search of a primary. Tonsil pathology was negative. I received 30 x 30 minute radiation treatments and 7 infusions (5 x Cisplatin and 2 x Carboplat). OxyContin and Fentanyl were used for pain management.
Around 3 years after treatment, my blood pressure became unstable. 220/130 is not unusual. Neither is 60/40. An article I found at NCI/NIH discussed this issue. These researchers assigned it to damaged baroreceptors at the base of the skull. The damage, they believe, is due to radiation to the head and neck. Has/is anyone else having blood pressure issues? I’m 11 years out of treatment.
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Hello Rer58 and welcome to the CSN H&N discussion forum.
I personally have not had blood pressure issues or baroreceptor issues but I posted an article on May 4 of this year on this very subject...
"Baroreflex" Failure" A Rare Late Effect Of Radiation Treatment
And I did a search here on the CSN site on the subject and found it has been brought up many times before, there are tons of results in the search...
Baroreceptor...search results from CSN...
I hope this helps...
Wishing You The Best
Take Care, God Bless
Russ
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Mavish this whole scenario is difficult from diagnosis to cancer-free and the list of after-effects we have to deal with. My heart goes out to you in dealing with all you have and especially this osteoradionecrosis. It is always a worriment every time I go to the dentist that he may say I need a tooth pulled and then hoping and praying for good healing following the extraction. I hope you can finally conquer this situation and not have to deal with it anymore. Take a look at this, it is what my oral surgeon said I would get in any future extractions.
Wishing You The Best
Take Care, God Bless
Russ
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