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#160802 01-24-2013 05:22 PM
Joined: Jan 2013
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dramz Offline OP
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Hello Everyone,

Not happy that I made the club but it's great to find such a dedicated group of responders.

I recently discovered that I have stage IV Tonsil cancer that spread to at least two left lymph nodes. The lymph nodes were removed for biopsy on Jan 9 after the needle biopsy came back inconclusive. Those nodes were positive for cancer with HPV 16 and a PET scan was completed but didn't show the primary site. My surgeon decided to do a tonsillectomy and random biopsy's in hopes he could find the primary site, which he did on the backside of the left tonsil. Both tonsils were removed on 17 Jan as well and all affected tissue around the tumor. Biopsy is still out to confirm the area around the tumor is free of remaining cancer cells.

Today I met with my ENT surgeon, Radiation oncologist, and medical oncologist to discuss treatment options. It seems that there are two/three options available. Neck dissection with rad (33-35 sessions). No dissection with rad (35 sessions) and 3 doses of Cisplatin, or a trial option that will include 35 rad sessions as well as treatment with cetuximab. I can find a lot of material for the first two options but I'm curious if anyone has personal experience with or has good reference pages for the use/outcomes with cetuximab. I'm not sure if the study uses the drug in conjunction with cisplatin or alone, but I'm curious about this route. I'm not excited about any of these options but want to make the right decision for my case. The primary site is removed as well as both nodes, so I'm not sure if a super aggressive chemo treatment is something I should consider if I can take a more mild route with the same results. Hope someone can shed some light on this third option or perhaps has the same experience as I. Thanks for taking the time to respond.

Dave R
T1 N2B M0


35 year old Male, excellent health minus this pesky cancer
Stage IV SCC of left tonsil and multiple nodes, T1 N2B M0 HPV+
01/07- two nodes removed for biopsy
01/17- tonsillectomy of both tonsils and primary tumor
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Welcome aboard Dave.

I pretty new here too, just starting induction chemo next Monday. Sounds like you have a good team looking after you and up to date on trials and offering different options. That means they are thinking rather than just looking up standard of care.

I just posted in another thread what my surgeon said about trails but basically it boiled down to validate new therapies with less side effects than current standard of care protocols.

I did not give serious consideration to those options but if I were to explore them I would NOT subject myself to being a guinea pig in those studies. For example, I studied induction chemo sequential CRT. There is plenty of studies showing TPF is better than PF over standard CRT only. So why on earth would anyone want to subject themselves to the CRT only control arm? And since phase III trials need to be randomized I believe why gamble? Just my limited view of participating in trials in MY specific case.

Good luck, lots of good folks here and lots of good info.

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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Dave, welcome to OCF!

The choice will be up to you which route you take with your treatment. The best thing you can do is to get treated at a major cancer center and also get a second opinion. The countrys biggest and most successful cancer centers will use a team based approach to discuss your case individually and come up with a treatment plan for you. They will have the most experienced doctors and is the best place to beat this.

Knowing you are HPV+ that means your cancer responds better to treatment and has less of a chance for recurrence. HPV+ usually means the tumor is located in the base of tongue or tonsils. Its very rare to have it anywhere else.

At this time, you are probably very busy preparing for the next step. You should be eating like crazy. Get a full blood count including thyroid. See a dentist and get flouride trays made plus have any questionable teeth removed now. Line up friends and family as helpers. Anyone who offers assistance take down their name and number and let them know when the time comes you will call them.

Best wishes with everything!


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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Posts: 3,082
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Dave R

Sorry you had to join our club also. My personal advice is to avoid Erbitux (Cetuximab). I chose that instead of platinum based chemo and I am convinced that is the reason for my recurrence at the same site a year later. The gold standard, proven by clinical trials, is IMRT and platinum chemo; cisplatin (not as conclusive with carboplatin but good). Talk with your doctors,
Others will have opinions here also.
There is a clinical trial going on right now trying to find out if Erbitux (Cetuximab) is as effective as Cisplatin, but no results published.
As for the neck dissection, I'm confused. Did the Petscan show abnormal SUV in your lymph nodes. Whatever failures or false positives PETscan have, they have a great track record of showing whether or not the lymph nodes have cancer. The lymph nodes are important to your health. While everyone is excited to read that they had X amount of nodes taken out and none of them had cancer, what it means is they just had unnecessary surgery and removal of a major immune system defense.
Again, ask these questions to your doctors.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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I has Erbitux and had a good result from it. I do remind posters that chemo only assists radiation. It is the radiation that kills the cancer and carries the load. Chemo can give you better odds of getting the cancer but it is only a 5-10% additional help so I say concentrate on the radiation and or surgery.

Given the fact that you had two nodes show positive for cancer I would also get the Neck Disection. If you had no signs of cancer in the nodes I would think it would be something you would give some thought to but having found cancer in the nodes I would not risk it.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Just a have been some serious discussions on Erbitux. What I've read says that non HPV cancer responds better to it, and it only works for certain people. It's best to have it in conjunction with cisplatin. Being that your cancer is HPV positive, which responds well to rads and chemo, the neck dissection isn't always necessary. If you had oral tongue or mucosal cancer my response would be different - re the dissection, but i'll let others with a similar diagnoses put their two cents in too. Best of luck 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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Hello Dave.

In 2005 I participated in a Phase II trial of surgery followed by chemo (docetaxel arm) plus cetuximab and radiation for advanced SCC of the Head and Neck RTOG 0234. Cisplatin was used with cetuximab for the other arm of the study. I do not know the results of this trial, but you may be able to research it through IRB#04RT105. Your MO/RO should have the trial consent form available for you to review. I had NED until June 2008 when I was diagnosed with mets to my lung. Wish I could offer more information. All the best to you.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
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Another Dave!!

Just my opinion but if it were me I would choose the concurrent chemo rad with 6 weekly treatments of Cisplatin or even Carboplatin.


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.
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I did a search on the main OCF news pages to pull up the recent articles about HPV and Erbitux (Cetuximab). This will give you lots of reading to help educate yourself about this option. Sometimes it works great with HPV+ patients and sometimes it fails.


OCF News Erbitux


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
Joined: Oct 2011
Posts: 805
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Just my input and you can see by my signature what we did...if you look at the posters on here who had the Erbitux only, you will see recurrences.Maybe not all, but quite a few. That should speak volumes to you.
Your decision however, best of luck with whatever you decide.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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