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A Washington Post reporter writes about choosing chemo only (no rads), followed by robotic surgery, for his HPV+ BOT tumor. Thought this might be of interest.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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Thanks for posting the article! I didnt see it in our newsfeed. Im sure it will get added soon.


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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I haven't seen this article but Wow.
Must be a brave individual. Chemo alone does not cure this cancer.
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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The article surprised me by actually seeking out Dr Maura Gillison. Her comments add even more credibility to this well written article.


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: Jul 2012
Posts: 3,267
Likes: 1
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Hi Leslie,

I saw this article online, and briefly read though it, no surprises I thought, but glad you posted it, so I could read it further. It appears he also had surgery, maybe robotic, needed a nasal tube for four days, which surgery sounds like to the primary BOT tumor, and possible removal of the cancerous lymph node, which were found to be negative of cancer, and tumor margins clear, so he had a complete response to the Induction Chemo.

I had high dose TPF Induction Chemo only in 2009, and only 5 days, not by choice, but due to the severity of side effects, actually near death, and could not complete the two scheduled IC, nor the curative chemoradiation. 8 months after my 6 month hospitalization from such, my PET/CT showed no suspicions, so I received no further treatment, and declared NED, but a month later I had an enlarged lymph node, and testing, biopsy, showed two lymph nodes were cancerous, and so my persistent cancer kept returning 6 more times in four years, but the tonsil cancer never returned, and was biopsied.

I read extensively about my tonsil cancer, including Induction Chemo, which is probably 35 years old. IC worked so well in preservation for laryngeal cancer, I believe with studies from the VA, originally with Cisplatin and 5-FU (PF) that they moved onto the oropharynx, and added the Taxoetere, to TPF, which was found to have less side effects, and so there was a period when it was used as neo-adjunct chemo before chemoradiation, as an alternative to surgery, but it wasn't witjout controversyl due to the high rate of toxic effects. I read studies where the death rate was around 2% and one even 5%, but the thing is IC works well to reduce the tumor, sometimes completely, but without further treatment I read it will mostly likely return within the year, and so did mine. IC seemed to go out of favor for a while, was not recommended, but then returned, and see it again with other chemo, monoclonal antibody variants, but a recent article said IC offered no overall survival benefit, and such can delay curative treatment or completely, as was my case. Donfoo here had a different experience with IC than mine, and went on to complete Chemoradiation.

I read briefly years ago, about chemo being studied to treat head and neck cancer, what type I don't recall, maybe it was IC, but sticks in my mind. I do have many articles for IC, and there is a medical book called Induction Chemo: Integrated Treatment Programs for Locally Advanced Cancer.

Good topic, as I know some may be inquiring.




Last edited by PaulB; 11-13-2016 04:48 PM. Reason: Corrections

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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Here's my two cents.

A tumor with clear margins is nothing like a tumor where the margins are not clear. John had the latter. The first time he saw the RO, the doctor repeated that twice but he didn't give us an explanation as to why the remark was pertinent. At the time, I had not yet clued into the importance of having clear margins.

I guess, with no clear margins, the radiation had to be stronger and cover a bigger area -- this is only my own reasoning. If that was the case, that was the reason why John had such problems with scarring and swallowing and everything else.

I doubt if the doctors would dial back the treatment in the case in the article if the cancer didn't have clear margins.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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This article was published in the print edition of the Post today, along with this sidebar about new criteria for staging.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Joined: Jul 2012
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Likes: 1
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Thanks for posting this Leslie, I'll have to read it. I saw the proposal last year or so, and a few more times since, here in the news feed also. I believe this was proposed by MD Anderson, but didn't know it was going into effect next month. Most HPV positive oropharyngeal cancers such as tonsil, BOT, Soft Palate, Vallecula will be stage 1, even though it was stage 4 before. Their keeping the T stage, Tumor, with oropharyngeal cancer, but the N, Nodes, is taken from the nasopharyngeal cancer staging.

If mine was HPV Positive, I was never tested in '09, T1N2bM0, would be stage 1A instead of Stage 4A

This will change some treatments for this type disease as some may be over-treated, but not sure if treatment guidelines for smokers with HPV positive oropharyngeal cancer, which disease is sometimes more aggressive, and there are different sub-types of HPV, A&B, and even difference with HPV-16 vs 18, the first which fares better I read, and a few others will reflect any changes.

Canada has changed or have their own new staging system at least proposal going back to 2015 mentioned in the news feed as noted here.

http://oralcancernews.org/wp/researchers-propose-new-staging-model-for-HPV-oropharyngeal-cancer/


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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