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.

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.

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.

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!!!

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.

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

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.

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.long

Llisa
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.

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,

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.