| Joined: Jan 2013 Posts: 57 "OCF Canuck" Supporting Member (50+ posts) | OP "OCF Canuck" Supporting Member (50+ posts) 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 | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | 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!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
| | | | 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 | 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!!! 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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 |
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: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | 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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | 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
| | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | 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!!!
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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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