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HPV+ Question

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

I keep seeing reference to HPV. What is it? How can I tell if I've been tested for it? What's the underlying impact of being or not being HPV+?

My prayers are with all, keep up the good fight.

Ed

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Hi Ed;

The "HPV" we refer to here is either the HPV-16, or HPV-18 virus. HPV stands for Human Papilloma Virus. This is the virus associated with cervical cancer in women and the virus for which the Gardasil vaccine was invented. T

here is a rather technical article that discusses some of the ramifications of HPV infection and Head/Neck cancers right here:
http://doctors.seton.net/Announcements/SetonNotes_3_10.pdf
As indicated in this article, HPV is rapidly becoming the major causal factor in Head/Neck cancers.

My HPV-16 was discovered when I asked my doctor to have my excised cancerous lymph node specifically tested for it (after reading about the relevance of HPV to Head/Neck cancers on the internet). My sample was sent by my local pathologist to a place in southern California called Clarient Laboratories. They did something called an immunohistochemical stain and checked for HPV 6, 11, 16, 18, 31, 33, 42, 51, 52, 56, and 58. I guess these are all the possible versions of HPV. HPV 16 and 18 are the primary types associated with cervical and Head/Neck cancers. My insurance paid for this test. I have subsequently requested, and have been given, the Gardasil vaccine, in an effort to boost my immune system response to HPV 16, the version that I have. My insurance will not pay for the Gardasil vaccine. Unless you specifically request this test, many doctors don't know to do it.

The significance of a positive test for HPV is that some recent studies have shown that HPV-derived cancers appear to respond more readily to treatment, and are less likely to recur than are non-HPV-derived cancers. At this point, the study results are all preliminary, and no firm data supporting that conclusion have been released.

Any more questions? Best wishes to you.

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hey Deb, How much was the vaccine. Did they say there were any potential side effects from getting the vaccine? I wonder if they will give me a hard time asking for being a male?

Charles

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Hi, Chuck

The vaccine is a series of three shots; first shot, second shot at the two-month point and third shot at the six-month point. My doctor charged me $160 for the shot and $12 to inject it. Side effects are minimal, so he admitted that there was essentially no likelihood of ill effects and a chance that it might do me some serious good. Other doctors may not agree. You may have to hunt around to find one who would sell it to you. My doctor is a bit of a renegade. Good luck in your efforts.

Deb

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Deb,
Your reponse is very good. Thank you for saying it so well. Mark is HPV16 positive, and I had all kinds of questions in the beginning...let them go during active phase of treatment, and now I find them coming up again.
Mark and I just spoke about this, and at my yearly GYN check up I plan to be tested, and I will ask about the usefulness of the vaccine for me. (New info, thanks!) Not to prevent H&N in me so much but as to guard Mark from exposure if I am the carrier.
Mark was told post treatment to stay away from the causitive factors to H&N, the traditional ones, drinking, smoking, even smoked foods. But his is HVP derived...and yes, Scam, I hear your words from one of my earliest posts, there needs to be a perfect storm, so to speak, and for cancer to occur no ONE factor is responsible. But do we know this to be the case with this new phenomenon of HPV derived H&N cancers??
Mark's radiologist, who is investigating the HPV factor told me that the chances of getting a new H&N from HPV are minimal...that is different from reoccurance...reoccurance would mean this one did not quite bite the dust, right??

Deb, I will read the article you copied.
Charles, let us know what they say about dudes getting the vaccine.
Thanks,
Kim

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I know there are no side effects - I made my daughter get the shots through the township clinic when she was 13. She complained about pain on site - but got over it quickly. Back in March I brought up HPV to my doctors and I was told the research was still very new and treatment will be the same and left it at that.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

My doctors said the same thing, that "treatment would be the same." That does make sense; after all, it is cancer. I'm thinking that it's the follow-up that is going to ultimately be different. If it is true that the Gardasil vaccine might play a role in preventing the cancer from coming back, we should all be receiving the vaccine as part of our treatment regime.

I was insistent that both of my daughters get the Gardasil vaccine. This was BEFORE my diagnosis. It was because, back when I was in college, I had an HPV-16 related pre-cancerous condition of the cervix, carcinoma in situ. Now, I'm pretty sure that it was the same HPV-16 coming back to zap me in the throat.

Do an online search for the results released in March 2010 from the University of Alabama. Women with cancer of the cervix, treated with surgery only, were given the Gardasil vaccine to see if it would reduce the incidence of cancer recurrence. In this one study, evidence was compelling that it did reduce the incidence of SCC cervical cancer recurrence. Not an unreasonable logical jump to conclude that the vaccine might have the same effect for the same HPV-16 derived SCC cancer occuring in the head/neck.

Deb

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Mark's doctors said the same thing. Until they really understand the HPV factor they treat the cancer the same way. I believe there is some thinking that treatment may be less "harsh" in the future for HPV related SCC because it responds so well. Right now, no one is willing to take that chance in clinical trials.
Kim

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

Thanks Deb,

I checked the link to Seton and your info has certainly help clear up my confusion.

Thanks to All,

Best Wishes - Ed

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

My wife and I were just discussing this topic at breakfast this morning. Wondering if I should be tested for HPV causative factors. Eighteen years ago, she had a bout of cervical cancer, and surgery removed the problem. Being 14 months finished with treatment for me and my stage 4 tonsil cancer, is it too late to obtain a proper sample for testing ?? Just wondering. I'll ask my Oncologist.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

When my husband was Dx with Larynx sqamous Cell cancer T4N1 Mo . He was in a study group , They seam to think that this cancer was passed from Mother to child. My husband never smoked or drank. His mother died of Ovarian cancer when he was 9. My father also died of Esophageal cancermy father was a smoker and dranker. Dad's mother had also died of Ovarian cancer after she fought a 14 year battle with T.B. My ex sister in law also fighting Throat cancer , her mother same thing.
Since he had Chemo and Radaition , The cancer came back mets to both lungs. He is now doing Carbosplatin . He had two rounds of Chemo only and one of four tumors are gone and the three remianing ones were smaller by 30-40% Thursday he will go for round four.
Has anyone heard anything more about this study? Are their others who's mother had ovarian cancer? Human Papillomavirse they think it was carried from birth and something in his genes reacted? They used the Buccal sample. BUt don't know what they found.He was also in a study group for a new machine but I do not remember the name of it, I don't know what they found,
I have not been able to find any trails for Larynx with Mets to the lungs, am I doing something wrong?
Is this off base to talk about?

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

I have not read all the research and as I am new to the discussion board most certainly not an expert. But I will share what my oncology nurse at MD Anderson and one of the fellows (at MD Anderson) explained is that there is still so much unknown about how one becomes HPV positive. As you indicated one thought is that it can be passed from mother to child. Or statement two it is sexually transmetted or 3) is that there are other means to become HPV positive which are not sexually transmitted. My medical oncologist explained to me that in females if you are HPV in your tonsil then most likely it did not go from your cervix to your tonsil. The question is how does one's tonsil become HPV + / get cancer.

I will read the article posted and other information as it may answer some of my questions.

Sending healing thoughts and positive vibes to all impacted by cancer.

~ Ei. Cib

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Many questions still surround the HPV and HNC (Head & Neck Cancers) connection. The most common associated strain is HPV 16 followed by HPV 18 at a much lower rate. There are dozens of strains identified.

HNCs have increased considerably over the past 20 years with a decrease in the number of people smoking. Smoking is considered a significant cause of HNC's and to a lesser degree alcohol consumption. Together, the effect increases so chances of getting a HNC go to 50 X.

HPV detection has not been so common (as it wasn't really tested for) but now it is known to be present in a significant number of people diagnosed with HNC's. Obviously a significant number of people with no HNC also have HPV. Studies have shown DNA involvement but due to the complex nature of trying to work out if HPV actually 'caused' these cancer, helped them form or just happened to be there at the same time are the questions we'd like answered. The very complex reactions at a cellular level make such definitive proof hard to nail down but it is starting to smell like a dog. As with many illnesses, several contributing factors may be the cause (Thanks for your insight Kim ;0) I would certainly hesitate to blame my SCC on HPV + test and as such I believe we all should take every measure we can to change & improve our health through lifestyle and environmental changes to avoid a recurrence or another fresh diagnosis. There is just not quite enough evidence to lay the blame all on HPV. Why leave a door open for another round.

The fact that there is DNA involvement may a reason treatments are more successful, but that still is not a conclusion as to why we got it in the first place.

It appears fairly clear HPV is contracted through oral sex. One leading Doctor believes the increase in the practice of oral sex in younger and younger people, to accommodate a 'safe sex' behavior in response to the AIDS scare, may be the cause of the increased incidence of HNC's, especially noted in surprisingly younger people.

Gardasil was developed by Merck to vaccinate again HPV and hence reduce risk of Cervical Cancers and they managed to fast track it's way through the approval process (FDA) for some reason. The choice to get vaccinated or not and the choice whether to vaccinate your young daughters is bit of a conundrum. There is a fierce 'Anti Gardasil' movement trying to have it stopped till further tests are done as there have been a considerable number of negative reactions and deaths, and a there is murky story as to why the drug was approved so quickly. A) Does it work ?? and B) How harmful is it or can it be ?

Personally I don't trust the big Pharma Companies. How they produce their clinical results and if they do or don't make hefty political and other contributions (AMA) always raises many questions.

Sorry I haven't really answered any questions here and I am faced the same dilemma with a young daughter. I hope when her time comes, the questions above will be answered, and we will all have a better idea which way to jump.

Scam

Scam

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

I've been doing some research on this. A virus is nothing more than RNA incased in a protein shell. It cannot survive on it's own. It needs a host cell. Once the virus invades the host cell, it injects the RNA into the nucleus. The cell than can be in one of two states, dormant when the viral RNA does nothing and active when the RNA mixes with the DNA of the cell to change it and makes replica viruses.

The main ingredients of Gardasil are:
Purified proteins that come from HPV types 6, 11, 16 & 18 WITHOUT the RNA. It also contains sodium chloride, L-histidine amorphous aluminum hydroxyphosphate sulfate, sodium borate, polysorbate 80 and water for injection. I haven't a clue what the other ingredients besides the water are for. The main ingredient is just those non-viral proteins.

When your body's immune system identifies the new protein, it learns to attack it and destroy it. The key is to get the injections of the non-viral protein BEFORE you contract the actual HPV-6, 11, 16 or 18. I do not believe that Gardasil does anything once you're tested positive. I don't think there's any drug to combat HOV-16/18 once you have it.

If someone knows otherwise, I would love to find out! I'm still awaiting my own test results.

rt29781
Posts: 8
Joined: Sep 2010

Currently as far as I know there are no vaccines approved for getting rid of HPV virus in people that are HPV+ but there are many approaches to producing such a vaccine and some are in clinical trials. I did a lot of research after my wife was diagnosed with SCCHN. A lot of the research is done for cervical cancer but it is still HPV that causes that. Here is a link:
www.nejm.org/doi/pdf/10.1056/NEJMoa0810097

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