Charles, You have a lot on your plate right now & your head is spinning. See what goes down on Friday. I know it is a tough break for you being soo young. The radiation does a number on you. The dry mouth is really a drag, sorry to say. But we do what we gotta do to get this (cancer) behind us. Being a nurse is a curse (knowing so much) & a blessing! I didn't ask a lot of questions...I was to numb! I really went along with what the doc suggested (I did refuse surgery). I was lucky that my sister, mom & dad came w/me to most appointments & asked the questions & took notes. I had "chemo brain" even before any chemo !!!!

The chemo they are likely advocating (cisplatin) is designed to enhance the effects of radiation. Do both. It is an aggressive disease and you should respond in kind.

Donna

Charles,

We don't know if Clark's SCC was HPV+ yet. We have been dealing with so many other issues that asking that question has taken a back seat. I do want to know though. At the next appt with the ENT, I'll be sure to ask.

Anita

Charles,

Yes it does appear that HPV+ SCC responds better to the same Tx and (therefore) has less of a chance of recurrence but the unanswered question is how much less treatment can a HPV+ patient receive and still kill the cancer noting the many different factual patient presentations one could encounter. There haven't been any studies trying to answer that question yet. Dr Trotti's may be the first to give us some direction but that will take years. Until then it would just be pure speculation for anyone to suggest a lesser Tx and the patient would be nothing more than a guinea pig. Do I feel that one day there will be 2 different treatments for HPV+ vs. HPV- SCC, yes but that doesn't mean I would want to be one of the one test subjects.

Re the surgery, you are correct that I didn't have a ND and that was Moffitt's approach even before I was confirmed HPV+. If I had listened to 3 of the 5 doctors I saw leading up to Moffitt, I would have had some form of a ND.

Also don't beat yourself up on the "who did it come from" question because you will most likely never get that answer. Just appreciate that fact that you are unique enough to have allowed the HPV virus an unchallenged welcome into your cellular structure. lol

Interesting topic as I just returned from my follow up appt at Duke. My Rad Dr brought up this same topic and discussed some of the trials that Duke will be part of. He indicated that they are part of the same study as Moffitt (David CPA ?). We were talking about why there is such a great "cure" rate for HPV+ and yes perhaps the treatment copuld be "reduced". His interesting comment was that perhaps the current treatment protocol is just right = the higher success rate. However he is a believer in being pro active and is excited about some of these new studies. He feels that less damage to the patient the better the success but job #1 is to get rid of the cancer.

Charles - I had the Rad/Chemo(Cisplatin)/surgery and had a relativly easy time with it. I have almost zero side effects. IMO the key is to get it the first time. I would not let the scare of the treatment have a bearing on my decision. I would go with the experts and what gave me the best chance to beat this thing. I agree with other comments about in the future there may be facts to support a lesser dose of Rad/Chemo but not sure I would get in line today.

You can see from this forum that people are beating this everyday and you can to.......the flip side can be pretty sweet. Good luck and I am sure the opinion from Sloan will help set direction.

Charles,
I also had the Rad/Chemo (Cisplatin).I did well up to the 2nd Cisplatin but got so sick from it that I refused the third on the insistance of family and friends who were certain that if I took that last dose I'd be dead. I came thru just fine without the 3rd, if you can describe any rad/chemo outcome as "fine". It was also okay with both docs. Still, everyone is so different. I think you'll get some really good feedback at Sloan. Best wishes!
Pat C.

My husband is going to Sloan for his treatment and I was very impressed with the amount of thought and discussion that went into his treatment recommendation. We saw a top surgeon there and everyone told us that he was going to recommend surgery because that's what surgeons do.
Nope, He recommended trying chemo/rads first. Then we met with the MO and RO and again lots of discussion and thought about treatment plan.
He is doing chemo and rad but it wasn't automatic at all. He felt like an individual case with great thought given to his treatment.
Yes, there's a certain protocal but there are many shades within it. So, I'm so glad to hear you are getting opinions.
Our philosophy was to go aggressive in the hopes of getting it all the first time around. But everyone has different thoughts on this,I imagine.
If you have any questions about Sloan let me know. As you can see, we're fans...

Hi Charles,
I had surgery first, then radiation (no chemo). In my case I have poor kidney function and they didn't want to risk the chemo making things worse.

I was told they prefer to go with chemo/radiation, but with appropriate scans, biopsies and scopes, the surgery first approach could find and remove the tumors and radiation could handle any remaining microscopic cancer.

Nevertheless, given an option I would have gone for chemo/radiation.

keep in mind it is increasingly common and acceptable to defer surgery until after chemo/radiation since in most cases the chemo/radiation can effectively eliminate most tumors so surgery may not be necessary.

On the HPV treatment choices issue, highly regard expert Dr. Maura Gillison recently said:
..."it is unclear whether intensification would in fact improve survival, or whether deintensification would be safe, especially given that metastasis remains equally problematic in HPV-positive disease. Until we have data, treatment decisions should be masked to HPV status...�

She also points out that HPV+ patients are generally younger and healthier to begin with.

Source: http://oralcancernews.org/wp/HPV-po...rognosis-does-not-lead-to-clear-choices/

A common permanent side effect from Cisplatin is ringing in the ears; Apparently less so with Carboplatin.

Charles, you got a lot of great advice. I want to add that I had rads and chmo (cisplatin). The chemo does increase the side effects of rads, but I had not nausea with chemo. I did make sure I took my nause meds as prescribed and did not wait for the nausea to come on before taking them. I did have a bad time with the radiation, but here I sit almost 4 month post treatment and can eat almost anything if it is moist enough. My cancer was not due to HPV. and it was a reccurrence and was told that if I had, had rads and chemo the first time, I may not have had to deak with it a second time. Who really ever knows with this stuff. I say all that to say I would go with the most aggressive approach in hopes that you do not have to deal with it a second time. You will recover, you many not thinks in the middle of treatment, but let me be a testimony that recovery does happen. Anyone on this board can tell you that if recovery happened for my it can happen for anyone.

Well, Went to Memorial-Sloan Kettering (NYC) on Friday for 3rd opinion. It is a great huge hospital. I recommend it highly if your local hospitals in the area do not provide top Radiology Oncologist; since the surgery and medicine part is less critical in my book. What i mean by this is Cisplatin can be given and monitored anywhere; yes it is important to have a good surgeon; but I think that having the latest radiology technology is the essential part of out treatment! Basically, the Medical oncologist said there was no reason for me to put my self under the stress of trying to relocate to the city for 7 weeks since I'm not going to be doing any clinical trials and I have a good radiology Oncologist in Rochester!

I'm amazed just thinking that people move themselves to another city for 8 weeks. I guess I could do it if I was married, had a girlfriend that could help; but the isolation alone plus having to deal with the stress of driving too and from treatments 5 days a week in a stressful city would be too much; especially being in pain, nauseated, and depress ( I would want to be home in my own bed)!! This diagnosis is depressing enough; I wouldn't be able to handle being isolated from my friends who I rely on for support!

Having said that, Yes Memorial Sloan said I should take the cisplatin too be safe. He agreed that my surgeon may be correct that I could be cancer free right now after surgery and that all I need is radiation to be safe. He also agreed that in the future hopefully trial studies will prove that less doses of radiation and cisplatin will be needed for HPV+ tumors; but right now it's too early! DAMMIT WHY COULDN"T I HAVE GOTTEN THIS 10 YEARS FROM NOW WHEN THERE IS MORE RESEARCH ON THE SUBJECT !!!!

The thing that upsets me at 2nd and 3rd opinions is that they don't present your case at a tumor board like your the treating hospital does. Wilmont (UofR) had a tumor board that met twice on my case and agreed both times that I only needed radiation. FYI for newbies: Tumor board= Surgeon, Radiology, and Medical oncologist;a team approach all deciding in a meeting what is best. Memorial Sloan was only 1 medical oncologist opinion who gives chemo; so of course he is going to say I think you should have chemo! At both opinions Roswell and Memorial Sloan I asked if the doctors could call my Rochester doctor and ask why they felt so strongly that I only needed radiation. They both said well he can call us if he wants too; I'll fax my opinion. What a bunch of crap!! It's all about money and I feel they don't care since I won't be being treated at that hospital!

Getting these 2nd and 3rd opinions was so frustrating!! I just feel like my body and my life is a big dam/sinking ship with HOLES and I'm frantically tying to find ways to plug the holes!

I guess I will be just another experiment/statistic in the oral cancer journals!!