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#198088 04-08-2019 11:21 AM
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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.

Hpvandme #198089 04-08-2019 12:41 PM
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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!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Hpvandme #198093 04-09-2019 05:23 AM
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Posts: 77
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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 !!

Hpvandme #198112 04-11-2019 08:39 PM
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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?

Last edited by Judy210; 04-11-2019 08:41 PM.

Wife and cheerleader. Right sided BOT dx 2/25, surgery 3/7 for tumor removal (clean margins) 2 lymph nodes 1 pos for ECE (ugh), pT2N1M0 HPV POSITIVE (one small blessing in this nightmare), Stage changed to Stage 1 due to diffuse and large HPV status. tx plan 33 radiation, 5 cisplatin chemo to begin 4/12.
Judy210 #198114 04-12-2019 12:04 PM
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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!


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






PaulB #198116 04-12-2019 06:19 PM
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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.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Hpvandme #198150 04-21-2019 11:58 PM
Joined: Mar 2019
Posts: 77
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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


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