| Joined: Apr 2013 Posts: 1 Member | OP Member Joined: Apr 2013 Posts: 1 | Hi Everyone ~ Well, I saw this website 5 years ago and read stuff, learned alot. My husband was diagnosed 5 years ago with stage 4 tonsil cancer. He went through radiation with 3 chemos. Then the problems with his jaw really started! It died, got replaced at Sloan Kettering (NY is a 6 hour drive from where we live) then it took nearly 2 years to heal. Everything he ate and drank went through a hole in his mouth, formed a fissure on the outside of his neck and spilled out. He went for hundreds of HBO treatments, then had massive infections and was on a pic line for antibiotics. Finally, a new dr from Beth Israel replaced that jaw problem with part of his back and regained some blood flow! Yay! So now, 5 years later, that Dr ordered a PET scan that was done on Good Friday and they found uptake in some lymph nodes in the middle of the chest. We go tomorrow to see what's up with that. It's been a rocky road and when he got diagnosed, 12 other people (close to us and in the news) had similar cancer and he's the only one left. Thought 5 years out was a safety zone. | | | | 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 | After all your husband had been through, I hope it's just scar tissue or inflammation. I received treatment at Beth Israel too, and like my doctors there. Good luck with the results.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I hope it's scar tissue or infection... with that much trouble going on I think it could very well be infection. Stuff like that can become systemic and travel. Hopefully that's all it is. The troubling thing someone posted recently is the HPV+ Scc despite responding well seems to come back more frequently which makes me wonder if maybe they shouldn't throw a different type of chemo into the mix along with the cysplatin in terms of trying to KILL the virus. Viruses can stick around in a dormant state. Maybe this is what is happening here. So what seems to be a five year window for most cancers as being a cure time, may be relevant with a NON virus related cancer, but may not be quite so relevant with an virus related cancer. I hope research proves this to be wrong. best of luck and prayers to you both.
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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Im sorry to hear everything your husband has been thru. How disheartening the latest news is! Try not to panic, it could just be a sign of infection. I hope this is nothing serious! Please keep us posted.
Good luck!!! ChristineSCC 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 | | | | 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 | Cheryld, Have you seen a study that reports a higher recurrence rate for HPV+ SCC? I haven't come across many HPV+ recurrences on this site other than some that received Erbitux which has been now linked to an increase HPV+ recurrence rate.
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Llisa, my heat goes out to you and your husband.
For the record, I was Stage IV when diagnosed, and I'd had the lump that led to the diagnosis for over 6 years, so I'm incurable. No sweat, no one gets out of here alive anyway.
But I was declared clean, following the surgery to remove the (tangerine sized) lump and the subsequent three applications of Cisplatin at 3 week intervals while I was getting my 8 weeks of radiation.
A routine follow-up scan 17 months later showed activity in my liver; a tissue biopsy confirmed that the cancer was back. This time, being in the liver meant it was a "Distant metastasis" and ups the staging to Stage IVc. That little "c" changes the prognosis signiicantly. Five-year survival rate for Stage IV is 30%; for IV "c" it is zero. Bear in mind, these are only statistics and meaningless in individual cases.
I have just been declared "free" for the third time, with both of the recurrences located in my liver, only the last time it was in multiple locations. After the first recurrence, I was free for three months. I won't get another scan until September, and who knows what it will show. I won't predict, but I know it will be back and I'm cool with that, it is what it is.
BTW, and for the record, the second time I was treated with a cocktail of Carboplatin and Taxol for two cycles (One IV per week for 3 weeks, then a week off) and because I had some (additional) neuropathy (more hearing loss), my MO switched the Taxol to Taxetere for another three cycles, at the end of which I was "free" again.
The third and most recent recurrence was treated with Xeloda; 5FU in pill form (3000 mg/day for 14 days, 7 days free is one cycle) for two cycles, then 2500 mg/day for another 4 cycles. And that brings us up to today.
You know, death is one of two experiences that all humans share, birth being the other. Living in the moment, doing everything you can to combat the disease and provide as much comfort to your mate (whether patient or caregiver) is all anyone can do.
I wish you and your mate every success in your struggle, and peace of mind from knowing that you've done all you can and the rest is out of your hands.
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | 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 | The recurrence rate for HPV positive is about 15 percent vs Non HPV, which is about 58 percent. HPV positive smokers may have an increased rate than non HPV positive. Non HPV positive rate of relapse levels off after two years, as opposed to some HPV positive, a different subtype possibly, that are seen to relapse after 5 years, for unknown reasons, in distant areas, and believe in some areas not typically expected.
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Paul, can you please post the source of your statement that HPV+ve patients relapse after a longer time period than HPV -ve patients please (as per the forum "rules")? I found the the information published by Maxwell et al in Clin Cancer Res. 2010 February 15; 16(4): 1226 (link below)very interesting in that it further stratifies HPV+ve patients into never smokers, former smokers and current smokers and gives the disease free survival rates and progression free survival rates based on smoking status. There is no evidence that time to relapse is any different for HPV+ve patients compared with non- HPV patients. http://clincancerres.aacrjournals.org/content/16/4/1226.longLlisa So sorry to hear that you have come so far only to have to potentially face it all again. You are right, 5 years moves you into zone where risk is much lower, but unfortunately it is not an absolutely safe zone. The risk of recurrence remains lifelong, so there is never a cutoff point where one can stop being vigilant. Seems you are under the care of a vigilant doctor which gives you the best chance of a positive outcome. Here's hoping the PET scan has picked up a chest infection only.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | David Erbitux has not been linked to failure in HPV+ve patients ... yet. There is a signal that this might be the case but to suggest that Erbitux does not work in HPV+ve patients is premature. The current level of evidence for lack of efficacy in this group is weak and contradicted in other equally weak observational cohorts. A retrospective record review in a single centre (which is the evidence being reported through Sloan Kettering) serves as a warning, and reminds us that a prospective trial needs to be conducted to get the true answer. It also serves to remind us that clinicians should not jump on the Erbitux bandwagon too eagerly just because it works well in recurrent disease. I personally felt that that the evidence supporting cisplatin for a young otherwise healthy person was stronger than that for cetuximab which is why I pushed back when our oncologist suggested Erbitux for Alex. However, I believe it clearly has a place and we just need to wait for the evidence to figure out exactly where that is. I note with alarm that many clinicians have made the "logical leap" and added Erbitux to induction regimens with almost no evidence. At least the negative reports filtering through now, might give them pause for thought. Luckily for those who will need to make decisions regarding treatment in the future, such a prospective trial is already in progress and we will eventually know how effective Erbitux is compared with cisplatin. Unfortunately results will not be available for a while yet (2015???)
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | 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 | Karen, Can't remember where I recently read it (within the past year) but what I read suggested that Erbitux along with Cisplatin in HPV+ SCC cases was OK vs Erbitux alone where they had found a higher than expected number of recurrences.
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 | The 5 year relapse is mentioned below. The percentages for recurrences, relapses are in a different resource(s) that I'm not looking for, but just add up the math. If they say HPV postive has about an 85 percent survival rate that leaves 15 percent. In HPV negative, the survival rate is less than 50 percent, so that's where the 58 percent recurrence or relapse comes in. http://jco.ascopubs.org/content/31/5/520.full
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: 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 | David, I don't know if you seen this when I posted it on 12/13/12, but here is a report made last year by Memorial Sloan Kettering Cancer Center in NYC, to the Journal of Clinical Oncology, questioning wether Erbitux should replace Cisplatin for chemoradiation in Locally Advanced Head and Neck Cancer, outside clinical trials, anytime soon, until further studies are done. The study also said the combination of Cisplatin and Erbitux had dissapointing results. http://jco.ascopubs.org/content/early/2012/11/30/JCO.2012.46.9049
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Paul, are you sure that link is OK? I can't seem to get to that study.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | It works fine for me using my MAC with Firefox. ChristineSCC 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 | | | | 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 | It works on my iPad. It's also on web search...controversies with HPV deintensification treatment head and neck 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
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi - no someone else here posted it - here - i just read it. I think the context wasn't a higher recurrence rate - but rather the likeliness of a recurrence past 5 years being higher than non HPV h&n cancer. What I gathered from reading it was... Usually - after five years you're pretty safe - but the article suggested this was not so with HPV related oral cancer to me what I gathered from that was - possibly something due to the dormancy of HPV and possibly that the follow up for HPV related patients should be more long term. I don't go hunting down articles so I'm pretty sure it was referenced here.
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
| | | | Joined: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,292 Likes: 1 | Hi Paul, Very nice pick on this reference. I ran it down two levels down and pleasantly surprised full text versions were viewable. I did get stuck on ref 8 to view the TNM guideline from AJCC cancer staging manual. I suspect it looks not-surprisingly like the one published by NCCN. One of the serious questions I posed to the RO was the IMRT rad field map and talked me through the rationale to use the advanced contouring and targeting features but be conservative and still radiate no targeted areas at lower dosage in case small cancers exist but not picked up on PET/CT or CT. This provides support to his rational; it is just too early in the game of medical clinical testing and verification to make such "radical" deviation from standard of care protocols. [quote]O'Sullivan et al12 appropriately highlight the limitations of their observations and recommend further validation in prospective clinical trials. Given our current knowledge, treatment of HPV-associated, locoregionally advanced cancers with anything less than the standard full doses of radiotherapy and concurrent cisplatin should only occur in the context of a clinical trial. To modify treatment components at this juncture may jeopardize a high probability of cure. [/quote] ABSTRACT http://jco.ascopubs.org/content/31/5/520.full.pdf+htmlFULL REPORT http://jco.ascopubs.org/content/31/5/543.full.pdf+htmlFYI - on another tangent. This is the first real dive for me into the subject of prognosis. I just started week 3 of concurrent CRT using standard of care protocols and able to feel just seeing some glimmer of light at the end of this journey. I have only accepted the general statements that HPV 16+ had better responses and outcomes but this is the first time I really looked at numbers. Pleasantly surprised that based on my staging going in and other factors (never smoke, drink) statistically I am 90+ percent of beating this first go around.
Last edited by donfoo; 04-30-2013 02:00 AM.
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 | Good luck with the treatment, Don Foo.
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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