| Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2014 Posts: 86 | 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
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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 | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | 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.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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. 
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 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 | 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/18607863http://www.ro-journal.com/content/7/1/215http://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
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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 | | | | 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 | 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!
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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.pngJust 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 | | | | 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 | 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
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | [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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