Hello, my name is Paul from Carlisle Iowa. I suffered from stage 4 squamous cell carcinoma with the primary tumor located at the base of tongue. I was not a smoker. My cancer was from the HPV 16 virus. I am 3 months out from my last chemo and radiation treatment. My CT scan after 3 months review indicated that I am now cancer free.
On Dec 5th 2018 my throat swelled shut. This is a very rare reaction to chemo/radiation. I almost died that day. I was taken by ambulance to ER, intubated and put on ventilator for 1 week. I then was taken off the ventilator and had a tracheotomy.
My trach has been removed as well as my feeding tube and I am doing pretty well. As of today I have lost 45ibs. I am happy to answer any questions and discuss my experiences with this type of cancer.
Welcome to OCF, Paul! Its always great having fellow survivors join our family. Sounds like you have been thru alot! Im looking forward to learning more about your journey. You must be doing very well to have your feeding tube removed so soon after everything you have been thru. Best wishes with your continued recovery!!!
Hi Paul,
We have same cancer, but mine Relapsed-- I have had recurrences & Mets.
Starting today I have 3 surgeries This week !!
This afternoon my GI surgeon is trying to open ( for his 5th try)-- the Pinpoint obstruction in my lower esophagus, which was caused by radiation.
Then Thursday I am admitted to The Main OR, for Double surgery with my 2 Head & Neck oncology surgeons, to do surgery in my Hypopharynx ( a mass beside my Vocal cords )
And then my primary head & neck surgeon is Resecting this fast growing tumor in front of my mouth.... It's tripled in size since January when he first biopsied it.
If you look at my profile, you can read about my extensive surgical history.
I had Tracheostomy as well, and from all indications it looks like I will be dependent on another one in the future.
I am 75 pounds right now and 100% dependent on my G tube.
Need to go now , as I am due in surgery in a few hours..
They are admitting me to The Cancer Center hospital on Thursday after surgery, but I will most likely be back gone later tonight.
Only to start fasting all over again in Wednesday !!
My husband diagnosed with BOT HPV+16 (diffuse and strong) with Mets to 2 nodes. 1 node had ECE, Other node microscopic invasion only. Had surgery for removal of tumor with clear margins, tumor size about 2.5cm, did not reach midline. Started his 30 radiation tx this Monday and has 1st of 6 chemo tomorrow. (Insisted on Friday chemo to have weekend to recover). They did not recommend feeding tube for him. He’s 56yo and otherwise excellent health.
How many radiation tx did you have? Did you have the reduced chemo of cytoplastin? How bad was the Mucositis? Did you use anything that you thought really helped?
Good luck moving forward, Judy210! I think I posted from a previous thread in regards to IMPT, and to you also Paul, good name btw, who started this original post!
waving from Pella. my husband had stage 4a BOT cancer. He finished up rads/chemo early Oct. He is now getting a biopsy of his adenoids as there is suspicious areas. He is being treated through Mercy Hospital.
Hi Paul,
I should clarify-- I said we have same cancer, however mine was Negative for all HPV types. My primary tumor was completely negative as we're my recurrences and new primary. Sadly, they had deep Positive Margins, invasive-- but no HPV.
That's a plus for you, though, as your aggressive treatments more likely achieved a good effect. , ongoing.
Very best to you going forward!
Crystal