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ak123 #184800 09-03-2014 09:07 AM
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Hi everyone,
We met with the tumor board this morning and their opinion was 6 weeks of IMRT and 3 big bags of Cisplatin. I asked if he can do the smaller doses over periods of time and they said no because studies show the chemo to be most affective being used 3 times. we are going to get full details when we meet with the radiation and chemo doctor one on one. In the meantime my brother is at the dentist getting his X-rays and fluoride trays done. (They actually had it at the institute! Yay one less trip)

Last edited by ak123; 09-03-2014 09:10 AM.

22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
ak123 #184803 09-03-2014 11:55 AM
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Glad you were able to be at tumor board. Didn't you find the increased your trust in the process and the quality of thought and decision making that goes into your treatment planning?

Generally, the concurrent platinum based chemo is there primarily for enhancing the effectiveness of the radiation. Chemo can kill micro cancer cells which may be the secondary benefit. Maybe the stronger doses at lesser frequency is better at obtaining this second benefit. This makes sense as he had no prior chemo treatments.

In my case, I had induction TPF, a series of 3 cycles at 3 weeks for 9 weeks. This was Monster Drano Deluxe and beat down any micro cells. I think this provided the option to go with weekly lower dose Carboplatin during concurrent chemoradiation in order to support the primary goal of enhancing the radiation.

Given HPV+ status this cancer is a slow grower so I feel like between induction and chemo-rads all the cancer was beat down as much as possible and loading up on Cisplatin would be overly aggressive.

Sounds logical but I've been to the 420 doc today so this can be all blue smoke. :-)


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
ak123 #184815 09-03-2014 04:02 PM
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Posts: 286
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It does sound like he's in the best of hands. Let us know how he goes.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
ak123 #184831 09-04-2014 03:52 AM
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Most here report less side effects that have had the 6 bags vs the 3 bags of Cis and quite a few here on the 3 big bag method never get the 3rd bag due to combined severe side effects so I wonder if the tumor board should perhaps consider comparing 6 small bags vs 2 big bags? I doubt that there's a study to guide them but I wonder which is really better.

I also agree with Don that maybe with HPV all this Cis is an overkill but I had the 3 bags and I'm here today 8 years later so even though I thought my Tx was going to kill me, I'm not going to bitch. smile


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.
ak123 #184832 09-04-2014 04:49 AM
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Here are some studies David. You may have to register to view. Weekly vs 3 bag Cisplatin. Also, recent reports say there is no benefit with HPV positivity seen outside the oropharynx. I've only seen one report with oral cancer, and HPV positivity benefit, which said the benefit was only with p16 positivity too, so both were needed.

Weekly vs 3 bag Cisplatin:

http://www.ncbi.nlm.nih.gov/pubmed/18607863

http://www.ro-journal.com/content/7/1/215

http://www.apocpcontrol.net/paper_file/issue_abs/Volume12_No5/1185-88%2520c%25204.1%2520Fatih%2520Kose.pdf

Variable risk prognosis with HPV:

http://oralcancernews.org/wp/study-...ncer-patients-to-vary-depending-on-site/


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






ak123 #184841 09-04-2014 01:47 PM
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Thanks Paul for the links.

The first sort of echos the obvious in that weekly dosage is better tolerated than the larger 3 cycle. What was interesting was the 100 mg/m dosing was not tolerated by any of the patients, all failing to make the 3rd dose. They must have feeling poorly and got only 200 cum dosage.

The 80mg/m x 3 group got 240 but had to suffer the side effects of larger dosing. They must have felt pretty bad too.

The weekly dose of 40 mg/m x 6/6 actually delivered the same or more cumm dosing and better tolerated.

In my case, the MO observed my tolerance to TPF series and was very confident with a smile that the weekly carbo would be a breeze. In fact, I felt no chemo side effects so at least in my case I can vote for the obvious conclusion. :-)




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
ak123 #184843 09-04-2014 01:54 PM
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I have to jump in on the HPV positive being slow growing .
Unfortunately not. Kris was HPV P16 positive. He had Cisplatin. He had recurrence 10 months later.
There appear to be subsets of HPV, 4 if my memory is correct. One subset acts like HPV negative and does not respond as well to chemo and rads.
Kris must have been in this subset.
I do not know whether they are teasing out these subsets for each patient prior to commencing treatment. I hope that this will eventually occur.
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!
ak123 #184845 09-04-2014 02:02 PM
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Thanks. My understanding is HPV P16 is the strain that does respond well to treatment and is slow growing. There are many kinds of HPV but if he has the common P16 and it came back at 10 months this seems reasonable and in the range. Check this chart out although it does not specify if p16. https://dl.dropboxusercontent.com/u/15178408/hpv-survival.png

Just to clarify my definition of fast vs slow. A "fast" growing cancer would spread in a few weeks or a month or two. When slow growing is mentioned the tumor can take many months to grow so much easier to catch and treat.



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
ak123 #184852 09-04-2014 07:20 PM
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Carboplatin was the easiest for me also. As we both did TPF IC, Don, the worst part is that there is no time for dosage reduction or treatment stoppage, unless you can't complete the rest of the two cycles spaced 21 days apart. By that time you already received high doses of chemo in 5 days. Mine was 160mg Cisplatin, 160mg Taxotere, and 1600mg 5-FU, plus a dozen or so of other medications, and a port put in lol. I remember the oncologist asking if I wanted my tooth extracted, and the PA behind him was shaking his head silently, eyes wide open in fear, "No!" Now I know why, somewhere along the line it was too toxic for me, so treatment was completely stopped, which is a negative aspect with TPF IC, and why it's controversial. One study said 50% didn't complete all the cycles or were unable to do CRT to follow due to the toxicities. On a postitve note, it works, very well, especially with HPV positive OPSCC.

Anyway, back to the topic, HPV-16 is a high risk HPV variant. P16 is a tumor suppressor gene, that is different than HPV-16, and is usually a negative predictor of outcome to be p16 positive with cancer, but with HPV in the oropharynx, it has better outcome being HPV-16 positive and p16 positive. They sometimes test for p16 in oropharynx for HPV first, which usually indicates being HPV positive too, but not in all cases, and the next step should be to test for HPV.

As Tammy mentioned, there are different variants of HPV-16/18. Type B seems to be more aggressive, similar to smoking related, for unknown reason, smoking history may be involved. As far as aggressiveness, I may be HPV involved, probably, so, never tested, non-smoker, moderate drinking, small T1, and had 8 recurrences, some in a month two, 6 months after a clear scan, and after each recurrence, the time frame between the two recurrences shortened. I have read this occurs with cancer. The average time for oropharynx recurrence, HPV, non HPV, is about the same, 8 months, except for distant metastases, I believe. Also, while smoking related oropharyngeal cancer levels off after 2 years, for some reason, some HPV positive cancers show failure after 3 years, 5 years, in distant areas, some usually not associated with metastases like liver, some other areas, but lungs is the most common, HPV or non HPV.


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






PaulB #184874 09-05-2014 09:40 PM
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[quote]One study said 50% didn't complete all the cycles or were unable to do CRT to follow due to the toxicities. On a postitve note, it works, very well, especially with HPV positive OPSCC. [/quote]I can attest to the brutality and effectiveness of TPF IC. I was nearly dead by the end of the 3rd round and TOLD them I needed more time to recover before starting CRT. By the same token the PET reported "near to complete resolution". I'd do the same treatment in a blink.

HPV 16? I tried to follow along but more confused than before. I just thought a positive p16 staining meant your odds of long term cure just leaped about 30 points.

I always thought HPV "negative" was associated with the smoker/drinker oral cancer with poorer outcomes.

Glad you are here to keep us, well at least me, from getting too far off the science trail.

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
All the details, join at http://beatdown.cognacom.com
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