| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | The article is on OCF's newsfeed, first reported a couple weeks ago. This service is free if anyone wants to sign up. OCF Newsfeed, HPV + and lower radiation study
ChristineSCC 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  | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome John,
I laughed at Cheryl's response that said, "Most men think their tough" lol. I thought I was, and chemo brought be to my knees, literally, for the 10 count after 5 days. I just dropped, and couldn't believe it with legs that were strong, was fit, and been a gym rat, exercise buff since I was 15, and all my employment required me sometimes be physical, and physically imposing, besides smart lol. and was somewhat was at 5'10" between 210-275lbs depending on my exercise routines. Anyway, maybe it helped me to recover, which is almost 5 years now , but it didn't do any good for my adverse reaction to chemo or whatever. In fact, during my week of high dose induction chemo, which is like 5x that of regular chemo, I was exercising in my room, walking the halls, and was able to walk out of the hospital on my own, barely, on the 6th day with my large duffle bag, and kept saying to myself, "Walk like a Man." from a Bruce Springsteen song.
I had suffered septic shock, sepsis, amongst many others, which hospitalized me for 6 months, and I'm still trying to figure out what happened if was reaction to certain vaccines, medication, interaction with other medications, exposure to viruses, etc. I'm more concerned with these now, and knowledge, rather than exercising during treatment. If so, one should protect themselves and limit your exposures in public.
Cancer is like any crisis, you prepare for the moment mentally, physically, get armed with knowledge, and during battle you fight, in our world it's either with surgery, radiation, Chemoradiation or combination thereof, and make necessary adjustments during, wether it be chemically, nutritionally, etc., then after battle you recover, review, learn, improve, and prep for the future.
Good luck
Last edited by PaulB; 06-23-2014 06:47 AM.
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
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=PaulB]Cancer is like any crisis, you prepare for the moment mentally, physically, get armed with knowledge, and during battle you fight, in our world it's either with surgery, radiation, Chemoradiation or combination thereof, and make necessary adjustments during, wether it be chemically, nutritionally, etc., then after battle you recover, review, learn, improve, and prep for the future. [/quote]
Can't sum it all up much better than these words. Wow.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Thanks Uptown! I would probably add to prepare part to make a plan (chemo, radiation, surgety, transportation, etc.) any alternatives, 2nd opinions, worst case scenarios, and during treatment, to carry out the plan.
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
| | | | | Joined: Jun 2014 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2014 Posts: 38 | Hi folks, thanks for all the great, informative and caring responses. Here's "How I Spent My Summer Vacation" so far...
June 11th needle biopsies
June 12th confirm Squamous Cell Carcinoma
June 14th Petscan (lights up at BOT)
June 16th meet with Radiation Oncologist/ confirmation of HPV16
June 18th surgical biopsies done (all come back negative)
June 26th meet with medical oncologist; later in day, second opinion at Dana Farber Cancer Center(more on below)
June 30th meet with nurse, radiation oncologist ; fitted for radiation mask, and CAT scan
I had the good fortune to meet with a panel of four oncologists at Dana Farber on Thursday. Though they said the team treating me had done everything they would do, there was a slight difference of opinion from the radiation oncologist, Dr. Roy Tischler. He takes a more aggressive approach with radiation, and would treat the nasal pharanx as well as the tongue, lymph nodes and tonsils that Dr. Bill O'Meara is aiming for.
Tishler says O'Meara's approach is the standard that most would give. O'Meara says the nasal pharanx is not implicated in many HPV16 cancers among non smokers of causcasian ancestry. He has very rarely seen a pharanx origin, and when he had it was before the testing for separating HPV16 from other types. In O'Meara's take, if one is not asian (subject to other viruses) and does not consume major amounts of smoked meat and fish, then pharanx is unnecessary, and he suggests if I want that to go to Tishler (which is impractical- the ride in during the day is horrendous, so I would face rather than a ten minute commute, more like 2-3 hours of travel time to and from appointments.
Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.
"This, too is part of Life's Rich Pageant!"
| | | | | Joined: Jun 2014 Posts: 17 Member | | Member
Joined: Jun 2014 Posts: 17 | Hey John,
I am currently going through RAD. Just had 15th today so I'm officially halfway.
I had the same feeling about PEG but oncologist insisted I have one just in case so that I get the nutrition needed. After reading and actually paying attention to what people have written about calories and protein I have discovered I can't hold my own even though I'm still eating and drinking some it is not near what I need to help my body heal..so I have formula here for the days I'm lacking and the pain is at its worst...so please don't feel as if the PEG is a bad thing or that you are giving in to the cancer because it is NOT! It is a tool to help your body if needed to succeed in getting rid of that intruder in you!
So from one to newbie to another......We can do this!
Love to all!
CathyG
3/26/14 dx SCC R ventral tong;PNI Stag 1 age 49 PET Clear 4/18/14 re excis part gloss; Marg clear; R END all clean 6/12/14 start RAD IMRT x30 CathyG
| | | | | Joined: Jun 2014 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2014 Posts: 38 | Hi Cathy G,
Thanks for your thoughts. It's really helpful to hear from someone midpoint int he road I'm starting down.
My feeling about the PEG are complicated, and surely part of it is vanity (which is not helpful, but it's there and I should be honest with myself).
But the other factor is everyone also stresses exercising, and I think that the PEG will interfere with my yoga, weights and cross trainer/treadmill/spin activity.
So I will try to avoid it. My Med Onc. says 80% of his patients in NH (I'm in northern MA) avoid the PEG successfully, while my rad Onc. is more clearly proPEG. If I was the RO, I would probably favor the PEG for most patients, too, seeing as the best outcome for his therapy-- in exclusion to the patient's life overall-- would probably be with the PEG.
But it's my body, and I am the only one who will live in it during this treatment. So I will try to continue with oral feeding (my docs will not consider the nasal feeding tube that David used successfully).
And they agree that if I have trouble, they can do the PEG operation at midpoint, and if it is necessary for my recovery, I won't kick.
We'll see what this journey has in store for me.
Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.
"This, too is part of Life's Rich Pageant!"
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | IMO IF you need a feeding tube it will most likely onlybe needed for a few weeks at the end of Tx or perhaps not even until the rads are over and then IF you need a feeding tube you can have the nasal tube installed in a doctors office in a few minutes without pain and no surgery. I only needed mine for 2 weeks post Tx and believe me it did it's job and I was even allowed to pull it out myself at home. Took all of 10 painless seconds.
I have been preaching to the world for the last 8 years about the nasal tube (over the PEG) and I still can't understand why some doctors continue to push that painfully surgically implanted, hard to maintain, prone to infection, complicated to feed by and daily life distrupting PEG??
Whew...
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I wish I had gone your route, David. The PEG was useless for me. No matter what I did, I puked out what I put in. I eventually went TPN via the port after losing a lot of weight. I have a hernia from the PEG, a surgical clip they left in poking me and a random toggle bolt somewhere around that area. LOL
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Uptown that was me I reallllly hate throwing up - and I tried the peg a few times and gave up.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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