David,
I had a Dr. at UCSF yesterday tell me that while there is no clinical evidence, she would suggest that I get the HPV vaccine after I recover from my treatment regimen. There is some preliminary data that suggests that the Guardasil vaccine may help to strengthen the immune system against a reoccurence of an HPV induced cancer.

Also, have you ever bothered to determine if your p16+ test results really meant that you have HPV. If so, did you go through the academic exercise of which strain of HPV that you have?

My wife says I am getting ahead of myself by thinking about this issue and that I should focus on getting through the treatment. Just can't help myself. I am, however, very grateful that I have settled on a course of treatment and that it will begin soon.
Thanks,

Frank,

As far as I know the FDA hasn't approved the Gardasil HPV shots for males yet and when they do they will most likely be prescribed for a much younger subset of our population like 12 to 24 as the vaccine is designed to work best prior to HPV exposure. Johns Hopkins was/is trying to develop a vaccine for males that will boost our immune systems response post exposure but I assume that's years away as well even if it is successful. Others have tried similar vaccines in the past with no success. If there is another vaccine out there for HPV I'm not aware of it.

I tested positive for HPV 16 which is the number of one of over 100 HPV strains identified to date. So far only 4 have been linked to cancer, 8, 11, 16 and 18. Number 16 is the most common strain associated with SCC in the oral cavity. As the scientific community spends more time and gains more knowledge about HPV they may find more strains and more links to cancer but that's just my opinion.

Your wife is correct that you should focus your attention on the Tx and recovery that lies ahead but like you I wanted to know as much as I could/can about the cancer that would kill me.

Guardasil is in clinical trials for males. If and when it approved it will be for presexual boys not adults. It has shown no effectivness in people that have been previously exposed to the virus, so your doctor does not understand its mechanism of action. The Hopkins vaccine is in a very small trial group of people that there are no results from yet. Only one person has had follow up testing from that group and there seems to be increased T cell activity in that person, but one data point does not a success make.

There are many more versions of HPV that are known to be oncogenic and the list above is not correct. I would list those known, but to be honest it doesn't do anyone here any good to be able to name them.

There is no evidence that I have seen, nor been told about by my contacts at Merck that indicate that Guardasil helps those of us that came to the disease from one of the covered versions of the virus. It does not strengthen the immune system. It creates an antibody for the protein sheath that is on the outside of the virus.

A PCR test for the virus would only be positive if you have the virus in the cells that were tested. Again that knowledge wouldn't help you in any way right now. The question is not whether at some point in time you had the virus, the question is did the virus persist in you. If you had the virus and your immune system destroyed it, you wouldn't have developed an HPV related cancer. If you had the virus and it persisted in you is where the risk lies. Probably the only manner to determine if it persisted or not would be to do a blood test to find out if your immune system had time to develop an HPV16 antibody or not.

I might add that since OCF has lobbied for the FDA to approve Guardacil for young males, if I had a child that was male and presexual, with what I know, I would likely try to find a pediatrician that was willing to vaccinate my son "off label" Pleases note that I am not advocating that anyone do what I just said I would do.

Hi Frank,

I am very sorry that you have to fight this battle, but I am thrilled that you are in such a great treatment center! Above all, I would say to be sure to ask ALL of the questions you have and get answers that you understand. If you have to ask a question a few different ways before your docs' responses sink in, just do it. The docs and you are a solid team, working together all for the same outcome: your best possible health!! Please don't be at all intimidated or shy about getting the answers you need to establish real trust and understanding about your situation and the process. I looked at the Q & A as a teambuilding exercise. It sounds like you're digesting your options pretty well, which is wonderful. Your teammates are people who you will never forget, with whom you will have a relationship like no other in your life!

Seems to me that the timeline is pretty consistent with those of us in the HPV 16 crowd. Before considering surgery, my docs treatment plan was 35 doses of daily IMRT (weekends off, thank goodness!) and chemo of cisplatin and experimental use of oral Tarceva . My medical team's concensus was that 5FU was not in the patients' best interest, but that doesn't mean the same is true for you. Personally I concur with your "leaning" and am so glad that you're getting a solid grip on the situation. Trust your team, which very importantly includes you as a fully participating member!

Congratulations on your strength and positive attitude! Do you have a solid support team to help you at home? How's your teenager doing with this? You're providing an example of what's most important in life, that's for sure! There's no doubt that you are going to feel HORRIBLE sometimes, but you can safely assure your son that you just have to go through this hell and it's only temporary.

Please keep us posted and know that this entire community is rooting for you!!

All the very best,
Carol

Hello all,
Well I am starting treatment tomorrow. At 10:30 am tomorrow I get my first of 30 doses of IMRT. Friday I go in at 9:30 am and get my first Cisplatin treatment and then my second dose of radiation at 4:00 pm. I am very happy to get the treatment started. At least I will now be in the cancer killing mode.

Should I move on from the "introduce yourself" forum and post in the "In Treatment" forum now?

I will be eager to hear from others about how to deal with any side effects from the chemoradiation.

Hi Frank,
Congratulations on starting Tx. It'll be a bitch but at least there is some comfort that it's started and hopefully will KILL the sucker. I would agree with you to start a new topic in the "in treatment". I would also suggest keeping just one thread for your entire treatment issues instead of 20 different threads for every little issue. Most of us follow people - not issues. It makes it easier for us to follow your progress and share our experiences, as they are relevant, along the way. Since you are in the East Bay (I am too) feel free to email directly and I will give you my phone number if you wish to talk about it. I put San Francisco in my signature line because most people don't know where the East Bay is. I am a native San Franciscan and was treated at UCSF.

Frank,

Rest assured that we will be here throughout your Tx and will answer any questions you may have. May not always be what you're hoping for but you get what you pay for.

Use whatever Forum seems appropriate to your question(s.

Where was your primary?

Hope you ate all your favorite fatty foods. If not you have at least another week to enjoy them guilt free.

Your first "strap down" might cause your heart to pound a little more than usual. Moffitt let us listen to loud music during each rad Tx and that helped past the time even though it was only 20 - 30 mins. The longer time was each week's measurements. Another thing...I took my portable DVD and watched a movie during Cis days as they can be really boring.