Brian

I also thought I had read or heard that the tumor samples were kept for a certain number of years, I hadn't checked to be sure this was the case. I was just curious on the HPV angle.

I actually don't know if there is any advantage to knowing if the cancer was HPV related at this point anyway, I guess especially with a nonsmoker you wonder where it came from!!

gail,

thanks for your reply and I will look into that.Hope you had a good time in Australia. I saw and oncologist this week and he said I am not a candidate for radiation but that my only option would be this clinical trial at Hopkins. I told him I thought you had to be cancer free and he said not necessarily but that he would talk to the doctor at Hopkins. I have yet to hear from him but will in all likely call myself and try and speak with someone about the trail and if needed make an appt to go up there myself. I hope this works since this seems to be my only hope. I still don't know if I even have HPV but hopefully I can get that testing and find out for sure.

Hi everyone --

Here's our next update on the Hopkins HPV-16 vaccine trial. Barry went up on the 25th for a physical exam by his MO, chest xray, some blood work (CBC) and a skin test (tetanus and candida). All the tests were normal, his blood counts in fact are normal in almost all respects.

The next day was not too much fun, as he had a leukophoresis. This was a harvesting of white blood cells for initial immunological testing. This is done much the same way as platelet collection, for those who have donated platelets -- over two hours his blood was passed through a machine which differentally took out white cells and returned the rest to his body. The nurses at the hematology unit were great, the "victim" lies in a recliner with a heating pad, covered with blankets, and watches one of a huge collection of DVDs on a big screen TV. The nurses leap to bring water or juice. Barry was concerned about this (the idea of having one's blood taken out and put back in IS a bit disconcerting) but it went well and he really didn't feel anything much. He was a bit light-headed for a few minutes, so he sat and watched the end of the video. Then we went up to the Hopkins cafeteria and had a big lunch of Swedish meatballs, rice and green beans. The security guard -- when you pass him to go to the cafe -- always jokingly says, "good luck, hope you come back" but actually the food there is very good. It was our first stop after Barry had his radiation morning treatments, but in those days he could only eat the soup!

The next step is his first vaccine inoculation, this will be the third week of October. Then two more inoculations at two-week intervals, and then a final one 12 weeks out. There will be another leukophoresis as well, as well as tests for HPV in serum and blood, and other blood work.

Eventually the pre-and post-vaccine white cells will be tested to see if, after the vaccinations, Barry's immune system has an improved response to the virus. This phase of the trial uses four concentrations of the vaccine (no placebo) to see which produces the best immune response. We do not know what level Barry has gotten. The concentrations being tested are based on animal trials and a cervical cancer trial which got underway last year.

The upside for Barry is that the initial trials indicate that the vaccine helps the body "clear" the virus so it may do the same for him. There seem to be no significant side effects, at least in the short term.

While at Hopkins we were told that the rate of participation in cancer clinical trials is very low and that this is hampering a lot of testing of new treatments. I should mention that the Hopkins trial is still recruiting, you can go to their web site and search for HPV head and neck cancer trials.

Gail

Hi all --

Next update on HPV-16 vaccine trial -- today was the day for Barry's first inoculation with the new vaccine. The day started (as usual) with blood taken and vital signs (good news, he's gained a couple more pounds since last visit) -- then a physical exam and chat with MO, then up to the chemo section where the inoculation is actually given. Although no one (so far) has shown any initial side effects, they are being careful and so they monitored him for an hour afterwards, vital signs (pulse, breathing, temperature and BP) every 15 minutes after receiving the vaccine. It was a non-event, fortunately, and after an hour we went to lunch and then a final check-in at the two-hour mark.

In 48 hours he goes up again for a skin check (for rash, etc.) and then in a week, the same, then another week and the second injection. (Four total).

We did find out he is in the second cohort so is getting second (of four) vaccine dosage.

No one is quite sure if (and where) HPV may linger in the body of a person who has had apparently successful treatment and has no detectable cancer. That is actually being investigated in another study Barry's in -- where they are looking at HPV markers (DNA and DNA fragments) in blood and sera of patients pre-, during and post-treatment over some years. Study is still ongoing, and not sure if any preliminary results yet.

Gail

Gail, I was a non smoker and a social drinker. I find this post, which I just read in it's entirety, extremely interesting. I live in Fl and would love to vol but I assume the distance would negate that. Please keep us all informed.

I intend to follow this discussion closely, since I, like so many, can not pinpoint a cause for my SCC. I have a question....(this is a place where we can ask what we need to know, isn't it, without worrying about proprieties??): I went to the gynecologist yesterday for a routine annual exam. I asked him to check for HPV, and he said that was what a PAP was.....and when I said that I wanted to be tested for HPV-16 specifically, the nurse said that they had gotten a paper recently telling them that they had to do a second collection for that test.

Is a vaginal sampling an adequate test for HPV that might relate to my oral cancer? Or do I need a blood test?

Another question: Several posters have mentioned that most people have HPV at some point. I thought that it was an STD. I would have no way of contracting an STD, and I wonder how so many people have evidence of it in their systems.

I would love to be part of such a study. I can see that I would need to live close to the major medical center where the study was taking place, since so many visits and tests and treatments are required. I do not live near such a place. Darn.

You need a new GYN if he/she is that far behind the 8 ball. A pap smear is a brush cytology looking for dysplasia not HPV. Even at that, it is only about 50% effective as a test, and the cervical exam is essentially visual and tactile, just like the oral cancer exam... event the precancerous lesions are the same since the disease in both cases is SCC most of the time. You need to read through the tons of HPV stuff on the site and the past postings here to get up to speed with all this, but briefly;

There are more than 100 varieties of HPV, only a dozen or so are know to be mutanogenic. Even if you get one of these like 16, 18, 33, etc. there is no guarantee that you will get cancer from it, many people are able to shed it from their body without consequence. It can remain dormant in your body for decades, so unless you have been celibate for at least that long, you could have contracted it long ago. While the most common sexually transferred STD, they are looking at other mechanisms of transfer, since it does not require a fluid transfer to happen like HIV. Anyone that has ever had sex could be a carrier and not know it; hence the new HPV vaccine is given to young girls before they become sexually active. Vaginal sampling is all that is necessary to test you for it, though knowledge that you have it is of dubious value given all that we do not know about it. There is no such thing as safe sex to prevent transfer, condoms do not prevent it. But your GYN saying that they had just gotten a paper about HPV, a virus that is the primary known cause of cervical cancer for decades, speaks volumes about this doctor. Your question about how many people have the virus in some version (the vast majority some benign version) strikes me as odd... who on this board has not had sex in their life time? Who thinks that our young people abstain from sex as teenagers? HPV is at epidemic proportions in our society because we are a sexually active people. Thank goodness that most of the strains are benign, and that even those that get one of the bad ones have a strong chance that their immune system will get rid of it before it can do serious harm.

Brian.....thanks, as always, for your generosity in sharing your knowledge. Several clarifications: My doctor knew all about HPV, of course, but he did not know about the advisory from his lab that he would need to send in a separate vaginal sample besides the one for the PAP test. They used to do the two tests from the same sample. So he had to collect a second sample.
Also.....I didn't mean that I didn't understand how people get HPV.....I just felt that since my husband and I are and have been totally monogamous all our lives, ( a little Puritan, perhaps) that I couldn't see where I would get it. My husband is a physician, so I suppose that he could have come into contact with it somehow. I guess we'll wait and see if I actually have it. I asked to be tested mostly out of curiousity, since there is nothing to do with the information at this time. But I do not have a clear causative factor for my SCC either, so I am trying to do some detective work in case I have any sort of recurrence. I do not think that smoking 37 years ago is the cause, though my surgeon says that it is.

I'll read what's already in the archives before I ask more questions, but thanks for getting me started. Thanks.

Hi all --

Another update from the ongoing Hopkins HPV vaccine trial -- nothing dramatic to report, probably a good thing! --- but Barry had his third (of four) injections of this new vaccine last week, and the injection site check-up today (nothing, as per usual).

Now we wait a few weeks and they will do another phoresis, this to check whether his immune system has responded to the "challenge" of the vaccine. A final inoculation is given 3 months out, and then more blood work, again to check for immune response. At this time the next cohort of trial participants, who are getting the next highest dose of vaccine, will start. If they experience negative side effects, then the dose will be lowered. However the cervical cancer trial (with same vaccine, started over a year ago) none of the dose levels showed negative effects but we have been told that all levels showed an enhanced immune response, a good result.

We won't be told what Barry's individual response to the vaccine is, but all the data will be pooled to assess what dose is most effective.

Will post more when there is news...

Gail