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Joined: Jan 2013
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"OCF Canuck"
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"OCF Canuck"
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Joined: Jan 2013
Posts: 57
Hello everyone unfortunately joining a great group of people fna done mar 11 12 negative cyst removed dec 04 pathology came back poss HPV cancer dec17 now waiting for rad jan 31 I guess I am on same bus as many of you doctors suggested no chemo because of HPV strain 16. Any suggestions thank you

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"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
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Hello Doolittle, Sorry you have to join us.
While it is correct that HPV +ve SCC responds very well to Radiation, I personally would also opt to have the chemo with it. Chemo improves your chance of no reoccurrence by 10 - 20%.
This is an aggressive cancer and I would hit it with everything in the arsenal.
Have you had a second opinion from anywhere ?
Was your treatment plan devised /discussed by a tumour board?
I'm sure others will chime in shortly.
Best of luck,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Sorry for your diagnosis, but welcome. Where is your primary, TNM grading..Tumor, Nodes, Metasteses. No chemo can be debatable, and many other factors are involved, but there is thought by some doctors of deescalation of HPV positive tumor in Head and Neck cancer treatment, and there are studies being done with that. HPV positive is shown to very responsive to radiation, with chemoradiation even better, and has better prognosis than HPV negative, but there is still no 100 percent cure rate, even with HPV. The majority of results with HPV positive treatments were done with the same treatments given for HPV negative tumors. It's unknown what the long term results are with lesser treatments. Other factors come into play such as Stage, tumor size, grade, local regional metasteses, distant metastases, overall health, underlying medical conditions, and a patients request having chemo or not. Maybe you have all that info, including results from any other scans like CT, MRI and or PET/CT. You basically have one shot at curing this, and should give it your best. Good luck with everything.


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






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Welcome to OCF! Sorry you have joined this group but glad you have found it. You are among friends and will get lots of support and info here.

I would suggest you eat everything you want. Dont worry about weight gain, even have desserts. Your sense of taste and swallowing will be off for a while so eat everything now so you dont have regrets.

Get a full blood test including thyroid count.

Get your teeth checked out by a dentist familiar with treating oral cancer patients. Any lose or questionable teeth need to be pulled now. Have flouride trays made and get prescription floride gel ready for when you begin treatments.

Get yourself a network of helpers. The more the better. Anyone who offers their help, take their name and number and let them know when the time comes you will contact them.

Always take an extra set of ears with you to doctor appointments. Write everything down. Take a biz card from each doctor and staple them onto the back of a small notebook so they are all in one place. This will help a caregiver if they would need to call one in an emergency.

Im sure there are many other tips that other members will help you with. For now read and educate yourself. An informed patient is their own best advocate.

Best wishes!!!


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
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Welcome to the bus nobody really wants to ride. But we are a close and friendly bunch. I'm new but from everything I read concurrent chemo and radiation provides better outcomes. The platinum based chemo improves the effectiveness of the radiation.

And I never read yet that having the cancer HPV+ was a reason to not include chemo with the radiation.

I would surely do more research, get better informed, and ask some probing questions to get better answers why your treatment is not CRT rather than RT.
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Here are a few aticles, the first three from frm same study, done with HPV treatment in H&N cancer with no chemotherapy. The last study, one which had no chemo, may not have been separated as HPV or non HPV, but most likley did contain HPV postive patients.

http://www.eurekalert.org/pub_releases/2012-05/esfr-htc050812.php

http://www.chemotherapyadvisor.com/...in-oropharyngeal-cancer/article/240731/#

http://www.dental-tribune.com/artic...ncer_treatment_without_chemotherapy.html

http://www.medicalnewstoday.com/articles/245400.php

http://www.ncbi.nlm.nih.gov/pubmed/22261362


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: Jul 2009
Posts: 1,406
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Posts: 1,406
Doolittle - I'll add my small welcome and full support. The posters above are some of the most knowledgeable folks here and have all given you great advice.

My thoughts are with you as you begin the journey. I know you'll get through it!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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"OCF Canuck"
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"OCF Canuck"
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Ditto what everyone else said and welcome!!


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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Doolittle,

After just gone through treatment. Rad is by far the worst part. Chemo sucks but in comparison it is nothing. And if it get you 20% reduction in reoccurance, that's a no brainer. Go for weekly Cisplatin. Weekly is easier than the three big bag methode.

That's my take.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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Posts: 1,291
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After rereading OP, I am not sure what he means by "no chemo". I can understand this if it means no induction chemo either sequential then CRT, slit, or post CRT. If he means no chemo as part of radiation, that does not sound right. The Lassen study at DAHANCA even uses a "Chemo" for the standard reason of making the rad work better.

[quote]Lassen and her colleagues investigated the outcomes of 181 patients on the Danish Head and Neck Cancer Group (DAHANCA) database who were treated between 1992 and 2005 for advanced oropharyngeal cancer�cancer that has spread from the primary site to lymph nodes and beyond. The patients received accelerated radiotherapy (six fractions of radiation over five days in order to reduce the overall length of treatment) together with Nimorazole, an agent that acts as a radiotherapy sensitiser, making cancer cells more receptive to the effects of radiation. No chemotherapy was given. Samples of tumour tissue were analysed to establish HPV status. [/quote]
Seems like this drug is used because of accellerated deliver of rads. who knows, getting way over my med tech knowledge. :-)
[quote]Abstract
BACKGROUND AND PURPOSE:
Causes of failure of radiotherapy in squamous cell carcinoma of the head and neck probably include repopulation and hypoxia. Very accelerated schedules such as continuous hyperfractionated accelerated radiation therapy (CHART) overcome the repopulation problem but allow limited time for reoxygenation, so a hypoxic-cell sensitizer may be especially beneficial. Nimorazole is the only such agent to have shown a significant effect in a randomized controlled trial in head and neck cancer. Accordingly we studied the combination of CHART and nimorazole.
[/quote]


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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