I saw your comment on HPV

Raes1

I just stumbled on this website tonite.. But was interested in your statement about public health agencies being aware, or not being aware, of the % of men exposed to HPV and contracting SSC. I may have not quoted this properly, but if you understand the gest of what I am conveying, I am so curious..My late husband had SSC, so I am anxious to learn what you have come across.
Best wishes to you and hope life is looking brighter for you and yours. Keep up the fight! Raes1

lyolan1

HPV
HI Raes1, the HPV and ssc in men is a relatively new discovery. Every Dr. I have spoken to has said that ssc, head and neck cancer in men, and the hpv relationship has exploded in the last few years. It was thought that men did not catch HPV. Wrong. Usually, susceptible men get HPV in their throat, which leads to ssc. How many, I do not know. However, I want my son to get the Guardisil shot before he becomes sexually active. I would not wish this treatment on any body. Persomnally, I think that the public health officials should be doing more to bring this potentially deadly disease to the publics attention. I would love to know the stats over the last 5 years. alex.

Skiffin16

lyolan1 said:

HPV
HI Raes1, the HPV and ssc in men is a relatively new discovery. Every Dr. I have spoken to has said that ssc, head and neck cancer in men, and the hpv relationship has exploded in the last few years. It was thought that men did not catch HPV. Wrong. Usually, susceptible men get HPV in their throat, which leads to ssc. How many, I do not know. However, I want my son to get the Guardisil shot before he becomes sexually active. I would not wish this treatment on any body. Persomnally, I think that the public health officials should be doing more to bring this potentially deadly disease to the publics attention. I would love to know the stats over the last 5 years. alex.

HPV & SCC
As you, I was unaware of the relationship of HPV & SCC in men and how much on the rise it is. Even more interesting that there is so little information being passed to the public. Although I'm not really sure what preventive measures could be taken.

I am 55 have never smoked, drink very little and never used tobacco either. But January 2nd, 2009 I was diagnosed with HPV related SCC stage III, right tonsil and a small tumor that developed rather quickly on the side of my neck behind the ear.

My ENT was very aggressive with a schedule for treatment, he removed the tonsils on January 5th, and I started three rounds of chemo (three week cycles). They ran me through with Cisplaten, Taxotere, and 5-FU. That was followed with seven weeks of Carboplaten every Monday and radiation daily with Amofostine injections daily just before the radiation (35 treatments).

The tumor actually dissolved during the 2nd - 3rd round of chemo. First round of PET scans and I'm clear and good to go.....

My son was concerned and asked his general MD about testing for HPV and was told in males unless you have something specific, they have no testing available.

I have heard of some rumblings of possibly having some vaccinations of Gardasil for younger males, but nothing that I'm aware of has been administered.

I never really associated HPV within anythng other than cervical cancer prior to me having been diagnosed.

In reading I discovered that HPV related throat cancers in males is on the brink of actually taking over or of higher incidence than males whom smoke or use tobacco and contract cancer..... scary.

JG

carolinagirl67

Skiffin16 said:

HPV & SCC
As you, I was unaware of the relationship of HPV & SCC in men and how much on the rise it is. Even more interesting that there is so little information being passed to the public. Although I'm not really sure what preventive measures could be taken.

I am 55 have never smoked, drink very little and never used tobacco either. But January 2nd, 2009 I was diagnosed with HPV related SCC stage III, right tonsil and a small tumor that developed rather quickly on the side of my neck behind the ear.

My ENT was very aggressive with a schedule for treatment, he removed the tonsils on January 5th, and I started three rounds of chemo (three week cycles). They ran me through with Cisplaten, Taxotere, and 5-FU. That was followed with seven weeks of Carboplaten every Monday and radiation daily with Amofostine injections daily just before the radiation (35 treatments).

The tumor actually dissolved during the 2nd - 3rd round of chemo. First round of PET scans and I'm clear and good to go.....

My son was concerned and asked his general MD about testing for HPV and was told in males unless you have something specific, they have no testing available.

I have heard of some rumblings of possibly having some vaccinations of Gardasil for younger males, but nothing that I'm aware of has been administered.

I never really associated HPV within anythng other than cervical cancer prior to me having been diagnosed.

In reading I discovered that HPV related throat cancers in males is on the brink of actually taking over or of higher incidence than males whom smoke or use tobacco and contract cancer..... scary.

JG

Sons
Hello,

My Husband is 55 and has just finished treatment for SCC HPV related to his right tonsil stage IV and they feel very confident they have gotten it all even though our first follow up scan is not for a couple of more weeks. My OB/GYN said she will give me and our son the Gardisil shot, only we have to pay the entire cost of $600 each and sign a waiver since it has only been approved for girls ages 11 to 24, so I am going ahead with the shots, can't hurt. Donna

Skiffin16

carolinagirl67 said:

Sons
Hello,

My Husband is 55 and has just finished treatment for SCC HPV related to his right tonsil stage IV and they feel very confident they have gotten it all even though our first follow up scan is not for a couple of more weeks. My OB/GYN said she will give me and our son the Gardisil shot, only we have to pay the entire cost of $600 each and sign a waiver since it has only been approved for girls ages 11 to 24, so I am going ahead with the shots, can't hurt. Donna

Gardasil
Yes they are expensive and from what I've heard, most insurance won't pay for them.....

Seems like it would be much less expensive for insurance to pay the $600 instead of $200,000 for Chemo, Radiation and all other related.....which is probably what my cost would have been with out insurance.

maureenbe

Skiffin16 said:

HPV & SCC
As you, I was unaware of the relationship of HPV & SCC in men and how much on the rise it is. Even more interesting that there is so little information being passed to the public. Although I'm not really sure what preventive measures could be taken.

I am 55 have never smoked, drink very little and never used tobacco either. But January 2nd, 2009 I was diagnosed with HPV related SCC stage III, right tonsil and a small tumor that developed rather quickly on the side of my neck behind the ear.

My ENT was very aggressive with a schedule for treatment, he removed the tonsils on January 5th, and I started three rounds of chemo (three week cycles). They ran me through with Cisplaten, Taxotere, and 5-FU. That was followed with seven weeks of Carboplaten every Monday and radiation daily with Amofostine injections daily just before the radiation (35 treatments).

The tumor actually dissolved during the 2nd - 3rd round of chemo. First round of PET scans and I'm clear and good to go.....

My son was concerned and asked his general MD about testing for HPV and was told in males unless you have something specific, they have no testing available.

I have heard of some rumblings of possibly having some vaccinations of Gardasil for younger males, but nothing that I'm aware of has been administered.

I never really associated HPV within anythng other than cervical cancer prior to me having been diagnosed.

In reading I discovered that HPV related throat cancers in males is on the brink of actually taking over or of higher incidence than males whom smoke or use tobacco and contract cancer..... scary.

JG

hearing loss
my brother was diagnosed with stage iv tonsil cancer with 2 lymph nodes affected hpv16 type he started chemo on oct 26 and radiation the next day decided against the surgery and is scheduled for Cisplatin x 3 with concurrent IMRT x 35, (50 Gy)
the main problem right now is that it is affecting his hearing which he has now been told is irreversable
has anyone else dealt with this and found a solution?

SmithMama2

maureenbe said:

hearing loss
my brother was diagnosed with stage iv tonsil cancer with 2 lymph nodes affected hpv16 type he started chemo on oct 26 and radiation the next day decided against the surgery and is scheduled for Cisplatin x 3 with concurrent IMRT x 35, (50 Gy)
the main problem right now is that it is affecting his hearing which he has now been told is irreversable
has anyone else dealt with this and found a solution?

a switch in chemo treatment
My husband also had Cisplatin at the start of his treatment. After one round, he was found to have some hearing loss, so he was switched to Carboplatin and Taxol given weekly instead. So in the end he had one Cisplatin and 5 Carbo/Taxol treatments. He is 4 weeks past treatment now, and he still has some ringing in his ears and he doesn't hear the higher frequencies (which were also damaged from being in a rock band for many years...) Our doc said that as time passes some of this hearing loss MIGHT return, but there is no guarantee. I guess getting used to that is part of the "new normal" we keep hearing about. Keep us posted about how your brother is doing. This is a great place to find the support you are looking for.

Skiffin16

maureenbe said:

hearing loss
my brother was diagnosed with stage iv tonsil cancer with 2 lymph nodes affected hpv16 type he started chemo on oct 26 and radiation the next day decided against the surgery and is scheduled for Cisplatin x 3 with concurrent IMRT x 35, (50 Gy)
the main problem right now is that it is affecting his hearing which he has now been told is irreversable
has anyone else dealt with this and found a solution?

Hearing Fine
Maureenbe,

I had the Cisplaten with Taxotere and 5FU for nine weeks (3 x 3 week cycles) followed up with seven concurrent weeks of carboplaten and 35 radiation exposures. I haven't experienced any hearing loss that I'm aware of. I wear progressive lens for glasses and that prescribtion hasn't changed either.

Hopefully they will be able to resolve any hearing losses in your husband, and he will have any losses return over time.

God Bless,
John

Tanager75

Skiffin16 said:

Hearing Fine
Maureenbe,

I had the Cisplaten with Taxotere and 5FU for nine weeks (3 x 3 week cycles) followed up with seven concurrent weeks of carboplaten and 35 radiation exposures. I haven't experienced any hearing loss that I'm aware of. I wear progressive lens for glasses and that prescribtion hasn't changed either.

Hopefully they will be able to resolve any hearing losses in your husband, and he will have any losses return over time.

God Bless,
John

Loss of hearing
I'm 8 weeks out of the same treatment you described. I get a PET scan on the 13th. I had significant hearing loss because of the Cisplaten. The ringing in my ears is loud. Hearing aids are one of my options and the ringing I suspect is not going away. The clinic did a baseline hearing test and the higher pitches went from moderate to severe just above profound if I remember right. The three things that I have found hardest is the hearing loss, ringing in my ears, and lack of saliva. I was told all these could get better but the hearing and ringing probably not.

Peace,

Mark

JGE

Brand new
Merck Wins U.S. Approval for Gardasil Vaccine in Boys (Update1)
By Shannon Pettypiece

Oct. 16 (Bloomberg) -- Merck & Co.’s Gardasil, a vaccine used to prevent cervical cancer in women, won U.S. regulatory approval for preventing genital warts in boys.
The U.S. Food and Drug Administration cleared the vaccine for use in males ages 9 to 26, Merck said today in a statement.
Gardasil protects against a sexually transmitted infection called human papillomavirus, or HPV, that can lead to cervical cancer in women and genital warts and cancer of the penis and anus in men. Gardasil, approved for females ages 9 to 26, is given mostly to school-age girls as a U.S.-recommended routine vaccination. Expanding the shot’s use could revive sales, which declined 5 percent last year, analysts have said.
“This is an important milestone, because the use of Gardasil can now help protect boys and girls and young men and women from certain diseases caused by this common virus,” said Richard Haupt, executive director of Merck Research Laboratories, in the company’s statement.
Approval in boys could add as much as $200 million and $300 million in annual sales, said Leerink Swann & Co. analyst Seamus Fernandez in a research report last month. Gardasil generated revenue of $1.4 billion last year.
Merck, based in Whitehouse Station, New Jersey, fell 6 cents, or less than 1 percent, to $33.24 at 1:26 p.m. in New York Stock Exchange composite trading.
Difficult Market
Selling Gardasil for boys could be a struggle for Merck because the public-health benefit may not outweigh the expense, Fernandez said. It would cost more than $100,000 to vaccinate enough boys to get one year of additional life compared with less than $50,000 for girls, according to a study by Harvard University researchers presented in June to the U.S. Centers for Disease Control and Prevention. Merck’s studies show it would cost $50,000 for both boys and girls. Merck’s study used a cost of $400 per vaccine with 100 percent protection.
Researchers used a measure called quality adjusted life years, or QALYs, that evaluate years of life saved as well as assigning a fraction of a year for years spent without certain diseases.
Merck will expand a patient rebate and dose replacement program to help cover the cost of the vaccine for 19- to 26- year-old men without health insurance and those with private insurance with partial or no coverage for the shots, according to the company’s statement.
Company Study
In a Merck-funded study released last year, researchers gave 4,065 boys and men ages 16 to 26 the vaccine or a placebo, then tracked them for signs of infection with HPV. After about 30 months, three men getting Gardasil developed genital warts and none had pre- cancerous growths linked to the HPV virus, compared with 28 cases of warts and three pre-cancerous lesions in the placebo group.
Gardasil, which is given in three shots over a six- month period, protects against infection caused by HPV types 6, 11, 16 and 18 -- four of the 40 types of the virus found in the genital area. More than 1 million cases of genital lesions, which can lead to cancer, occur in men and women in the U.S. each year, and 30 million cases occur worldwide, according to Merck.
While 20 million Americans are infected with HPV, most will be able to fight off the infection naturally. About 1 percent of sexually active men in the U.S. will develop genital warts from HPV, the CDC said. Gardasil is already approved for males in 40 countries worldwide.
To contact the reporter responsible for this story: Shannon Pettypiece in New York at spettypiece@bloomberg.net.
Last Updated: October 16, 2009 13:37 EDT

delnative

JGE said:

Brand new
Merck Wins U.S. Approval for Gardasil Vaccine in Boys (Update1)
By Shannon Pettypiece

Oct. 16 (Bloomberg) -- Merck & Co.’s Gardasil, a vaccine used to prevent cervical cancer in women, won U.S. regulatory approval for preventing genital warts in boys.
The U.S. Food and Drug Administration cleared the vaccine for use in males ages 9 to 26, Merck said today in a statement.
Gardasil protects against a sexually transmitted infection called human papillomavirus, or HPV, that can lead to cervical cancer in women and genital warts and cancer of the penis and anus in men. Gardasil, approved for females ages 9 to 26, is given mostly to school-age girls as a U.S.-recommended routine vaccination. Expanding the shot’s use could revive sales, which declined 5 percent last year, analysts have said.
“This is an important milestone, because the use of Gardasil can now help protect boys and girls and young men and women from certain diseases caused by this common virus,” said Richard Haupt, executive director of Merck Research Laboratories, in the company’s statement.
Approval in boys could add as much as $200 million and $300 million in annual sales, said Leerink Swann & Co. analyst Seamus Fernandez in a research report last month. Gardasil generated revenue of $1.4 billion last year.
Merck, based in Whitehouse Station, New Jersey, fell 6 cents, or less than 1 percent, to $33.24 at 1:26 p.m. in New York Stock Exchange composite trading.
Difficult Market
Selling Gardasil for boys could be a struggle for Merck because the public-health benefit may not outweigh the expense, Fernandez said. It would cost more than $100,000 to vaccinate enough boys to get one year of additional life compared with less than $50,000 for girls, according to a study by Harvard University researchers presented in June to the U.S. Centers for Disease Control and Prevention. Merck’s studies show it would cost $50,000 for both boys and girls. Merck’s study used a cost of $400 per vaccine with 100 percent protection.
Researchers used a measure called quality adjusted life years, or QALYs, that evaluate years of life saved as well as assigning a fraction of a year for years spent without certain diseases.
Merck will expand a patient rebate and dose replacement program to help cover the cost of the vaccine for 19- to 26- year-old men without health insurance and those with private insurance with partial or no coverage for the shots, according to the company’s statement.
Company Study
In a Merck-funded study released last year, researchers gave 4,065 boys and men ages 16 to 26 the vaccine or a placebo, then tracked them for signs of infection with HPV. After about 30 months, three men getting Gardasil developed genital warts and none had pre- cancerous growths linked to the HPV virus, compared with 28 cases of warts and three pre-cancerous lesions in the placebo group.
Gardasil, which is given in three shots over a six- month period, protects against infection caused by HPV types 6, 11, 16 and 18 -- four of the 40 types of the virus found in the genital area. More than 1 million cases of genital lesions, which can lead to cancer, occur in men and women in the U.S. each year, and 30 million cases occur worldwide, according to Merck.
While 20 million Americans are infected with HPV, most will be able to fight off the infection naturally. About 1 percent of sexually active men in the U.S. will develop genital warts from HPV, the CDC said. Gardasil is already approved for males in 40 countries worldwide.
To contact the reporter responsible for this story: Shannon Pettypiece in New York at spettypiece@bloomberg.net.
Last Updated: October 16, 2009 13:37 EDT

Now THAT is good news!
Glad to hear about Gardasil for boys. It's curious that they didn't mention the fact that HPV can cause tonsil cancer -- I'm living proof of the fact that it can and does -- and it's also curious that the Harvard study apparently neglects to take that into account.
Either way, it's about time. But I'm afraid that most parents won't vaccinate their boys for HPV unless there's a concerted push to get them to do so.

--Jim in Delaware

Skiffin16

delnative said:

Now THAT is good news!
Glad to hear about Gardasil for boys. It's curious that they didn't mention the fact that HPV can cause tonsil cancer -- I'm living proof of the fact that it can and does -- and it's also curious that the Harvard study apparently neglects to take that into account.
Either way, it's about time. But I'm afraid that most parents won't vaccinate their boys for HPV unless there's a concerted push to get them to do so.

--Jim in Delaware

I'm another DelNative
Jim, I also was treated for HPV derived tonsil cancer .... In reading and a little arm chair research on the web, HPV derived throat cancer is on the rise among men in their 50's. It's actually overtaking tobacco related throat cancers.

Like you, I'm surprised more wasn't mentioned to the fact in the study above.

JG

naturenaw

maureenbe said:

hearing loss
my brother was diagnosed with stage iv tonsil cancer with 2 lymph nodes affected hpv16 type he started chemo on oct 26 and radiation the next day decided against the surgery and is scheduled for Cisplatin x 3 with concurrent IMRT x 35, (50 Gy)
the main problem right now is that it is affecting his hearing which he has now been told is irreversable
has anyone else dealt with this and found a solution?

Hearing Loss
I also have hearing loss from Cisplatin. It was worse right after treatments but now that I am 4 and a half years past treatments it is a little better. Regular hearing aids can't help me with it since it's not a consistent loss. Initially I had a lot of ringing in the ears but that has gone away (praise God!) and what I am left with I liken it to when you have a bad cell phone connection and get bits and pices of words and your brain just has to piece them together and guess what's being said. I don't hear the 's' sound, soft 'c', 'ch', 'th', 'f', 'x' ,'cks', etc. (so one example is that fifth and sixth sound the exact same to me.) When I am alert I hear much better because my brain can guess much quicker what's being said. So Perhaps I think my hearing is getting better but it may just be that the brain is getting better at figuring out the puzzle of speech I hear. Doctors say I should try a newer digital hearing aid for this and perhaps it would give me some help. Anyone have any luck with those?

There is a bright side to this new "normal"! We have some really funny misunderstandings in our household due to my hearing. It gives my kids and I a lot to laugh about!!

Goalie

Skiffin16 said:

I'm another DelNative
Jim, I also was treated for HPV derived tonsil cancer .... In reading and a little arm chair research on the web, HPV derived throat cancer is on the rise among men in their 50's. It's actually overtaking tobacco related throat cancers.

Like you, I'm surprised more wasn't mentioned to the fact in the study above.

JG

approved and done
I was also HPV for tonsil and lymph node cancer and that convinced us to make sure that not only our girls (college) but son (14) got the shots. Fortunately, our Blue Cross has decided to pay for it (subject to the usual yearly deductible, personal deductible, family deductible, lifetime deductible, because-we-can deductible, etc).

Also, it was exactly a year ago now that I was going through treatment but in the last couple of months my tinnitus has gotten decidedly worse. Yes, I had cisplatin. I don't know if it just took time to show, time to notice, or something else, but it is annoying. In air conditioned places or with constant fans, it is less noticeable but outside in the quiet it is noisy.

Doug

jtl

Tanager75 said:

Loss of hearing
I'm 8 weeks out of the same treatment you described. I get a PET scan on the 13th. I had significant hearing loss because of the Cisplaten. The ringing in my ears is loud. Hearing aids are one of my options and the ringing I suspect is not going away. The clinic did a baseline hearing test and the higher pitches went from moderate to severe just above profound if I remember right. The three things that I have found hardest is the hearing loss, ringing in my ears, and lack of saliva. I was told all these could get better but the hearing and ringing probably not.

Peace,

Mark

Hearing Loss
I was all set to start my Hi-dose Cisplaten until I read the potential hearing loss disclosure. I already have a permanent hearing loss going back to my childhood. The Enc said I could go totally deaf so I quickly switched to Erbitux. Scarey thing is that the Onc had this info on my chart but failed to pick up on it. Had I known about Erbitux from the get go I never would have considered Cisplaten anyway. I was never offered this option and think I now know why.......cost. When there is an accepted alternative that has been in use for 3 decades at a fraction of the cost I think most insurance companies and Medicare would need some strong justification to prescribe the newer and more expensive drug.

nwasen

HPV
I am glad they are going forward with more info on HPV and head and neck cancer and I hope that boys and girls will be vaccinated.
They tell me my stage 4 cancer was smoking caused but they also found HPV in my cancer cells. The James now tests all head and neck cancers for it. Not a cheap test but guess it can alter the treatment. (I had 35 rads and 7 chemos but turned down the surgery).
Much to learn and imagine the knowledge gleaned in the next ten years!!!
Peace
nancy

Skiffin16

nwasen said:

HPV
I am glad they are going forward with more info on HPV and head and neck cancer and I hope that boys and girls will be vaccinated.
They tell me my stage 4 cancer was smoking caused but they also found HPV in my cancer cells. The James now tests all head and neck cancers for it. Not a cheap test but guess it can alter the treatment. (I had 35 rads and 7 chemos but turned down the surgery).
Much to learn and imagine the knowledge gleaned in the next ten years!!!
Peace
nancy

PV Post
Actually this post originated over two years ago, and was renewed by the spammer above.

But Nancy, at this time I don't think they have actually altered treatment based on HPV or not. But I know someone on here (DrMary I believe) posted that is probably in the future.

Perhaps a less aggressive approach to what you and I and others like Mary's husband Doug. We all (and many others) pretty much had the full gamet.

Myself was sixteen total weeks of four types of chemo and the 35 rads sessions.

Best,
John

DrMary

Skiffin16 said:

PV Post
Actually this post originated over two years ago, and was renewed by the spammer above.

But Nancy, at this time I don't think they have actually altered treatment based on HPV or not. But I know someone on here (DrMary I believe) posted that is probably in the future.

Perhaps a less aggressive approach to what you and I and others like Mary's husband Doug. We all (and many others) pretty much had the full gamet.

Myself was sixteen total weeks of four types of chemo and the 35 rads sessions.

Best,
John

That was I
I did read an article saying that studies were indicating 2 chemo treatments vs 3 (this was cisplatin) was just as effective in HPV H&NC. I'll try to dig up the citation.

olybee

HPV
just read this thread, and just FYI, my sons (ages 19 and 24) both were vaccinated this year, and our insurance paid in full (Regence Blue Shield). I told my close friends to get their sons vaccinated, and most of them had young teens (13 - 15) and they were already vaccinated on the advice of their pediatricians. So at least here, boys are being vaccinated on a fairly routine basis, thank goodness. I'm just assuming maybe since this started in 2009, things have changed with recommendations and insurance payments.

Whosoever

Skiffin16 said:

PV Post
Actually this post originated over two years ago, and was renewed by the spammer above.

But Nancy, at this time I don't think they have actually altered treatment based on HPV or not. But I know someone on here (DrMary I believe) posted that is probably in the future.

Perhaps a less aggressive approach to what you and I and others like Mary's husband Doug. We all (and many others) pretty much had the full gamet.

Myself was sixteen total weeks of four types of chemo and the 35 rads sessions.

Best,
John

Finished my treatments
Finished my treatments September 9 2011, and they have changed some of the durations. My modality was done by Stanford Docs here in California. I had Stage 4 SCCHN HPV 16, 13 tumors totaling about 4the inches diameter. First was taxater, displaying and 5fu. Went in on Monday mornings hooked up for 24 hours a day for 5 days every 21 days for 4 courses. Next was 200 rads a day for only 25 days with one day a week of carboplatin. Cancer free now. They have started to shorten the radiation courses with the more info they get on this. I found myself educating my local oncologist on HPV since they had not seen many cases. Have a great day.