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donfoo Offline OP
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Hello all,

I read back a bit and did not seem much that answered what is on my mind so here goes. I'd like to start a dialog about recurrence: the whys, hows, implications, etc.

All my energy and focus to date has been getting educated on cancer and treatment and getting through recovery. Now, feeling on the backside and downhill side of recovery and with my first upcoming scan, I adjust the energy to the topic of recurrence.

So, my logic goes like this. I had cancer in the nodes and primary at BOT. Induction chemo stopped the progression of the cancer and in fact, after, 9 weeks (3x3 week cycles) of induction chemo (TPF), the final reports stated near or complete resolution. So, that makes me think that at least of the known and detectable cancer, all has been minimized.

On to chemo-radiation: 7 weekly doses of carboplatin 150, administered primarily and soley as a radio-synthesizer agent for the radio therapy, no intent to use this chemo to mop up anything. 35 sessions for 70 gY total.

Understanding that only surgery and radiation KILLS then I want to believe the RO and dosimetrist created a map and painted the radiation all around my known cancer areas as well as other nearby areas just to mop up any loose cells.

Now being post treatment, I should have no cancer in the head neck area? It has been all killed off right?

But clearly, recurrence makes all shiver in their boots in anticipation of each new scheduled scan for the coming years.

Why all the hysteria if the treatment got all the cancer?

Is it that precancerous cells or conditions provide fertile ground for new cancers of the same time to come to life in the same HNC area that was treated or do new cancer cells pop up in new areas not previously treated? Is it possible not all cancer in the treated area(s) were killed by radiation?

My hope is this thread can assist myself and others in becoming more knowledgeable about the hows and whys cancers recur. Thanks, 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
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Don,

First off we all have those nagging recurrence thoughts post Tx and unfortunately IMO nothing can be said that will lessen them. Time is the only healer here. I also don't think anyone can answer your questions other than Father Time.

Your cancer was caused by HPV and HPV+ SCC has been proven to respond better to the existing Tx than HPV- SCC and therefore the recurrence rate is lower and the survival rate is higher but 100% of neither is achieved.

The scientific community doesn't know enough about oral HPV to provide you with these answers but after talking to a HPV research Phd from Moffitt Wednesday she did tell me that our body does not build up an immunity to HPV from an exposure (think of the cold virus) so we can and do acquire it multiple times through out our life and we clear it most of the time. The virus can go dormant but not in the sense of hibernation or inactivity but more like not causing problems if that makes sense so we can test positive for the virus for years even decades without causing cancer.

Moffitt is now doing a study on the effectiveness of the Gardasil vaccination on "mature" patients hopefully to prove that it still can be effective past 26 or even post HPV+ SCC.


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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Good topic, and one really not touched on. I think most hope, if it's not spoken the dark cloud will pass their door. Having had 5 recurrences myself, I have no problem discussing it, but as time gors on you'll think less sbout it, and I never reslly reached that point. We may be similar in thought? I like to know the good, the bad, and the ugly, have a game plan in place, A, B and C, records in place, treatment options, doctors, and if that time comes, there is no panic, since you've already prepared for this, and can be fine tuned as you go along or a different direction, like driving a car with a GPS, to avoid some obstacles, traffic. That's what homeland security does, and just about every public facility, is plan worst case scenarios, practice, and act when necessary. Even knowing this, I was caught off guard initially, thinking I was stronger than cancer, chemo, and underestimated the opponent, and went in blindly, not even knowing what chemo I was getting, and didn't for more than a year later, and this caused many set backs, which I may touch on another time.

I guess the oropharyngel related cancers, recurrences can be separated by smoking related vs. HPV related. Yours is HPV related, my status is unknown, probably HPV, with tonsil as primary, but is a good post for others either way.

I'll touch on HPV related. Your IC is very much responsive to HPV, and probably blew the cancer to the next universe, and thankfully not you. I did 5 days of it, and that killed all my cancer by itself for 8 months, but we know chemo doesn't kill cancer alone, and prevented me from further treatment for 1.3 years, another long story. Anyway, HPV related has a 15% failure rate, 85-90% cure, I like the words they make up, as opposed to tobacco related, which is much higher, and would say around 47%, not sure the numbers the first year, but that's probably several years, numbers get foggy, and failure rates levels off after 2 years. Most tobacco related failures occur the first two years, and levels off. On the other hand, some HPV, maybe a more aggressive viral type, has been suprisingly recurring or have failure rate, after 5 years, and in distant locations not normally associated with metastases, like bone, liver, I believe.

There are other factors that have a role on recurrences, wether HPV or not. Like the location of the tumor, BOT can be a resistsnt atea, due to the deep musculature, lymphatics. Also the size of the tumor, tumor histology, thickness, and then the lymph nodes, number, any negative findings like ECE, LVI, PNI, treatment lapses.

HPV is of different biology, so does not progress like Tobacco related cancer, with the leukoplakia, dysplasia to the elliptical lining of the aerodigestive tract, no field cancerization, and most times, has no symptoms, and confined to one structure, and usually not noticed until in the lymph nodes. As discussed before, once infected with HPV-16 you have an antibody for it, and can't catch it again, so that is some hope. Wether or not one can catch it simultaneously is the oropharynx, and anogenital area at the same time, might be unlikely, ands better chance hitting lotto.

I also heard of HPV-16 studies in patients already with the disease, but with DNA, and saying the existing Guardasil vaccines will not work with those already with the virus. Who knows?


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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I'd be curious to know recurrence rates for HPV AND smoking. I was a smoker and I tested HPV positive.... like a double whammy in getting H&N cancer. One way or another I was destined to get it. Now that I'm post Tx, what are the stats for me? I've not seen any that take into account both smoking and HPV.

My first scans (CAT and PET) are in early August.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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donfoo Offline OP
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[quote]As discussed before, once infected with HPV-16 you have an antibody for it, and can't catch it again, so that is some hope.[/quote]I think I missed something here. If I understand this statement on face value, then what is the worry about recurrence of HPV16+ cancer if antibodies are there to knock out further recurrence?


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: Sep 2006
Posts: 8,311
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I was told by the Moffitt HPV Phd researcher Wed that our bodies DO NOT produce an antibody to HPV regardless of strain. We can clear it today and reacquire it next week and clear it again, etc. It can transform the cell into cancer at anytime but why one time vs another time is the unknown. That's why I was told 7 years ago that if I were single and assumptively still sexually active with multiple parties, I should get the vaccine even at 58.

The current Moffitt study on Gardasil and mature subjects tests them to make sure they are clear of the virus before shots are given since the shots are preventative not curative.


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: Jul 2012
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Don, I believe the recurrence concern is for anything microscopic that was not removed during your surgery, killed during chemoradiation treatment, distant metastases, and secondary cancer from radiation, chemo, and those that are smokers that may be higher risk of a aerodigestive SCC cancer, other type cancers, possibly other type HPV cancers.

David, I think the antibody subject was brought up in the discussion with HPV Questions, I made a few months ago in After treatment Issues, and brought up about HPV-16 reinfection, new cancer, in the oropharynx, anogenital area, and read some develop antibodies for HPV-16, after exposure, if I have it correct. HPV-18, maybe, which is not as common in the oropharynx, and if 1% of HPV-16 is in the oropharynx, 18, is even more remote. HPV-16 in the cervic can have multiple infections fought off, which may be different in the oropharynx. I'm sure there is more than one theory, and keeps changing as more information is found, but would like to know, if anyone can get some written facts.


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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T...... This may be something that can help you. Here is a very detail article in The Journal of Clinical Oncology about smoking and HPV+ oral cancers.

Smoking and HPV+ Study


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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Thanks Christine,

That's a lot to digest but a quick glance reveals that smoking, regardless of HPV+, dictates the risk. So it's keep my fingers crossed and hope for the best.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since

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