HPV
You all are my HEROS! You have been through so much and yet you are always so positive and upbeat. Stay Strong. My best to you all!
PS. My husband is doing FANTASTIC! He is three weeks into a six week cycle of erbitux, carboplatin and 5-fu and is still working and has not lost one pound. Remarkable.
Comments
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Your Husband is MY hero!
I'm still being diagnosed; today I get an MRI of the soft tissue of the neck, but we already know it metastisized to at least one lymph node. That pesky primary is hiding out somewhere. Both I and my husband were treated for HPV many years ago, so the first thing I asked for was to have my excised tumor tested. I'm still waiting for the results. I insisted that both my daughters get the shot as soon as it became available. I'm glad I did. And, I would recommend it to everyone.
Deb L0 -
HPV - so many questionsD Lewis said:Your Husband is MY hero!
I'm still being diagnosed; today I get an MRI of the soft tissue of the neck, but we already know it metastisized to at least one lymph node. That pesky primary is hiding out somewhere. Both I and my husband were treated for HPV many years ago, so the first thing I asked for was to have my excised tumor tested. I'm still waiting for the results. I insisted that both my daughters get the shot as soon as it became available. I'm glad I did. And, I would recommend it to everyone.
Deb L
My boyfriend finished treatment for SCC of the right tonsil this past September. He had Cisplatin, Erbitux, and 5FU with simulataneous radiation. Brutal!!! His radiologist is convinced that his cancer was caused by HPV, however it has never been confirmed nor has he been tested. His doctor said that there was NO test for a man, but they are giving him the gardicil shot. Please advise me if you are a male and have been positively tested for HPV. How was the test administered? My boyfriend's concern is that if he is positive, he could transmit it to me and then I would be at risk of developing cancer. (I tested negative last year when he was diagnosed.)
He had his first CT scan last week and the results show no signs of cancer! Amen!
Thanks to all of the survivors who contribute to these discussion boards, you've helped me more than you know.
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GaDonnaGaDonna said:HPV - so many questions
My boyfriend finished treatment for SCC of the right tonsil this past September. He had Cisplatin, Erbitux, and 5FU with simulataneous radiation. Brutal!!! His radiologist is convinced that his cancer was caused by HPV, however it has never been confirmed nor has he been tested. His doctor said that there was NO test for a man, but they are giving him the gardicil shot. Please advise me if you are a male and have been positively tested for HPV. How was the test administered? My boyfriend's concern is that if he is positive, he could transmit it to me and then I would be at risk of developing cancer. (I tested negative last year when he was diagnosed.)
He had his first CT scan last week and the results show no signs of cancer! Amen!
Thanks to all of the survivors who contribute to these discussion boards, you've helped me more than you know.
Wow, the simularities, My name is Donna and my husband also had right tonsil SCC. They tested his tonsil for HPV when he had his biospsy and it was tested positive for HPV. I am a female, 42 and am getting the guardasil shot. Amen for your boyfreinds good CT scan. My husband finsihed his first treatment in Sept. but his first PET showed "activity" in lymph nodes in the chest so we are doing more chemo.
All my best to you!
Donna0 -
Donna
You never said anything about being a vegetarian; I too was for almost 15 years, I got off of it for the last 8 years of doing treatment and just trying to eat what had taste. I am planning on getting back to what I was before this interruption happened in my life. Glad to hear you and your husband are doing well, I still keep you both in my prayers at night.
Take care and God be with you.0 -
HPV-derived SCC does not correlate with active HPV infectionHondo said:Donna
You never said anything about being a vegetarian; I too was for almost 15 years, I got off of it for the last 8 years of doing treatment and just trying to eat what had taste. I am planning on getting back to what I was before this interruption happened in my life. Glad to hear you and your husband are doing well, I still keep you both in my prayers at night.
Take care and God be with you.
At least one of the articles I read recently, and I'm not recalling which one it was, stated that there is no correlation between HPV-derived SCC, and an active HPV infection. In fact, the article stated that most people with HPV-positive tumors did not test as having an active HPV infection. It would appear that, one way or another, the body is able to resolve the HPV infection, but the long-term possibility of HPV-derived cancer remains. If I come across the study again, I will post the reference here on the H & N Forums. I'm sure enquiring minds will want to know.
Deb L.0 -
VegetarianHondo said:Donna
You never said anything about being a vegetarian; I too was for almost 15 years, I got off of it for the last 8 years of doing treatment and just trying to eat what had taste. I am planning on getting back to what I was before this interruption happened in my life. Glad to hear you and your husband are doing well, I still keep you both in my prayers at night.
Take care and God be with you.
Hey Hondo,
I am not a PETA fanatic or anything like that, I do love my leather shoes, hehe. I just never liked the taste of meat and after research realized it is a better way of eating. I have been eating a lot more organic and feel really good about that. Than you for keeping us in your prayers. I pray for all the cancer victims everyday, it is an awful thing and I just hope I live to see a cure for all of it.
Peace to you! Donna0 -
Donnacarolinagirl67 said:Vegetarian
Hey Hondo,
I am not a PETA fanatic or anything like that, I do love my leather shoes, hehe. I just never liked the taste of meat and after research realized it is a better way of eating. I have been eating a lot more organic and feel really good about that. Than you for keeping us in your prayers. I pray for all the cancer victims everyday, it is an awful thing and I just hope I live to see a cure for all of it.
Peace to you! Donna
People think I am wacky because I eat an avocado every morning at work; I have no idea why I like them so much because I can eat them 3 times a day with no problem. When I go home to Honduras I stay on the farm most of the time and can almost reach out of the window to get Mangos, Avocados, Papayas, Star fruit and banana all that I want Fresh is best. I am getting home sick.
Take care0 -
Deb's a member of the club!Hondo said:Donna
People think I am wacky because I eat an avocado every morning at work; I have no idea why I like them so much because I can eat them 3 times a day with no problem. When I go home to Honduras I stay on the farm most of the time and can almost reach out of the window to get Mangos, Avocados, Papayas, Star fruit and banana all that I want Fresh is best. I am getting home sick.
Take care
My ENT Doc confirmed today that my excised mets SCC neck lymph node tested "highly positive for P-16, in other words HPV-16." I was told that the sample was "infested", this being the exact word used by the pathologist. Now I'm wondering if I should follow up on some kind of assessment of whether I have an active case of HPV. Maybe the thing just goes viral and stays around forever. I would hate to resolve this case of SCC via surgery, radiation and chemo, only to have another round of SCC initiated by residual HPV. Wondering if the anti-HPV shot would do me any good at this point. Looks like more research is in order on my part.
Deb L0 -
condolences but welcome to the club :-)D Lewis said:Deb's a member of the club!
My ENT Doc confirmed today that my excised mets SCC neck lymph node tested "highly positive for P-16, in other words HPV-16." I was told that the sample was "infested", this being the exact word used by the pathologist. Now I'm wondering if I should follow up on some kind of assessment of whether I have an active case of HPV. Maybe the thing just goes viral and stays around forever. I would hate to resolve this case of SCC via surgery, radiation and chemo, only to have another round of SCC initiated by residual HPV. Wondering if the anti-HPV shot would do me any good at this point. Looks like more research is in order on my part.
Deb L
Please post your research about the HPV vaccine. Most of us with HPV+ and scc will be interested.
Best,
Mick0 -
Confused.micktissue said:condolences but welcome to the club :-)
Please post your research about the HPV vaccine. Most of us with HPV+ and scc will be interested.
Best,
Mick
Drs haven't even mentioned HPV. Is there a difference in the treatment? Do they assume because my husband smoked it comes from that?0 -
HPVwifeforlife said:Confused.
Drs haven't even mentioned HPV. Is there a difference in the treatment? Do they assume because my husband smoked it comes from that?
There is evidence that suggests a causal link between HPV and scc of the head/neck. Statistically a HPV+ Dx is a better prognostic indicator than a smoker. I am assuming that your husband's scc is caused from smoking, but there's really no definitive way to make sure of that. If he's tested for HPV and he's positive, there is a statistical prognostic benefit.
There is no difference in treatment (that I am aware of) but there may be a difference in staging and prognosis. You need to ask that question of your Dr and don't stop asking questions. The science of cancer treatment is often anecdotal with scc of the head and neck. Your Drs are obligated to truthfully tell you all they know even if they're not sure exactly what to do. If you feel that they are not fully disclosing all they think you need to tell them that. It will (should not, I guess) not offend them. If it does you might want to get a new Dr.
Best,
Mick0 -
treatment is the samemicktissue said:HPV
There is evidence that suggests a causal link between HPV and scc of the head/neck. Statistically a HPV+ Dx is a better prognostic indicator than a smoker. I am assuming that your husband's scc is caused from smoking, but there's really no definitive way to make sure of that. If he's tested for HPV and he's positive, there is a statistical prognostic benefit.
There is no difference in treatment (that I am aware of) but there may be a difference in staging and prognosis. You need to ask that question of your Dr and don't stop asking questions. The science of cancer treatment is often anecdotal with scc of the head and neck. Your Drs are obligated to truthfully tell you all they know even if they're not sure exactly what to do. If you feel that they are not fully disclosing all they think you need to tell them that. It will (should not, I guess) not offend them. If it does you might want to get a new Dr.
Best,
Mick
The treatment remains the same but the prognosis seems to be better although there isn't a lot of documented evidence on this it will probably bear itself out. I had my daughter vaccinated and plan to have my 20 y/o son vaccinated also. I don't think $600 is what my doctor quted me, at least I hope not. I think it was under two hundred.
Many times you have to ask for the test after being diagnosed. If you have a history of smoking and drinking they assume it was caused by that.
I've read that anyone with six or more sex partners is most likely infected with the virus.0 -
Costratface said:treatment is the same
The treatment remains the same but the prognosis seems to be better although there isn't a lot of documented evidence on this it will probably bear itself out. I had my daughter vaccinated and plan to have my 20 y/o son vaccinated also. I don't think $600 is what my doctor quted me, at least I hope not. I think it was under two hundred.
Many times you have to ask for the test after being diagnosed. If you have a history of smoking and drinking they assume it was caused by that.
I've read that anyone with six or more sex partners is most likely infected with the virus.
I believe and I may be wrong, that Gardasil vaccines for girls are given in three separate doses ranging at about $200 each.
Most of what I've read concerning HPV vaccines for men or boys have been regarding genital warts and younger men with little mention of HPV and HN cancers. Though the majority of readings that I have seen referring to HPV derived HN cancers in men always relate to SCC in men that are in their mid to late 40's - early 60's.
I know when I was diagnosed, my son who is in his late 20's asked his physician about vaccines and diagnosis. He was told that basically there isn't anything to test for in men if you have no symptoms or anything going on.
Other readings that I have seen regarding vacination of boys and men suggest that the effectiveness versus prevention doesn't justify having the vaccine.
I think that it's just something that is growing and little research or history has been provided yet (let alone education) to get any good information at this time.
Historically, it shows that it is becoming more prevalent in men in their 50's. Also to the point of overtaking tobacco related HN cancers. Again, the feeling is because of better edication concerning smoking (less men smoking or using tobacco) but also changes in lifestyle (more sexual partners and attitudes concerning oral sex partners).
I don't really think that I have read anything definitive of exact causes or preventatives.
John0 -
I asked my doc if they had
I asked my doc if they had tested my cancerous lymph node for HPV since my oncologist was of the opinion that my cancer derived from the virus. They said the results were negative. So does that leave only one other method for contracting my type of cancer which would be through drinking and smoking?
I am just worried now because I know that that type of cancer is more likely to come back.
GRAVEY0 -
HPVcarolinagirl67 said:GaDonna
Wow, the simularities, My name is Donna and my husband also had right tonsil SCC. They tested his tonsil for HPV when he had his biospsy and it was tested positive for HPV. I am a female, 42 and am getting the guardasil shot. Amen for your boyfreinds good CT scan. My husband finsihed his first treatment in Sept. but his first PET showed "activity" in lymph nodes in the chest so we are doing more chemo.
All my best to you!
Donna
Hi Donna,
Same boat, unfortunatly! My husband had the left tonsil affected as well as ln. All clear & now the lung nodules. My question is? Could you already have the HPV & it just lies dormant? Will the shot do any good at this point? Interested for my own knowledge. I worry about cervical cancer. Wondering if I too, can get this? Thanks, Brenda0 -
"Don't worry, be happy"GRAVEY said:I asked my doc if they had
I asked my doc if they had tested my cancerous lymph node for HPV since my oncologist was of the opinion that my cancer derived from the virus. They said the results were negative. So does that leave only one other method for contracting my type of cancer which would be through drinking and smoking?
I am just worried now because I know that that type of cancer is more likely to come back.
GRAVEY
I was frankly surprised by some of the seemingly smug posts here and elsewhere in the board about HPV, as if an HPV-positive diagnosis was a reprieve of some sort from you-know-what.
I am not surprised that people would react that way, that they would hear one way or another that their cancer MIGHT have been instigated by this HPV virus and this MIGHT improve their chances of success with treatment, but reading some of the posts I could almost hear "Wahoo!" over the internet connection, a sort of "I'm gonna live! Sorry about you, sucker!" thing going on, at least to my sensitive ears.
I kept quiet because we all need our ropes of hope, if you will. Far be it from me to snip at those.
I am not HPV-positive, gravey, and am frankly glad that I am not, as it means I did not pass this on to my wife nor, potentially, from what I am reading above, to my children.
I am not HPV-positive, gravey, and like any number of others you might find on this site and in this board, I am alive now more than four years since my diagnosis and treatment.
As a cancer survivor, gravey, if you are inclined to worry, there are lots of things you can worry about other than something you cannot control and which may, in the end, have nothing to do with your survival: concentrate, gravey, on what you can control.
Don't worry, be happy.
Take care,
Joe0 -
HPV-whoohoosoccerfreaks said:"Don't worry, be happy"
I was frankly surprised by some of the seemingly smug posts here and elsewhere in the board about HPV, as if an HPV-positive diagnosis was a reprieve of some sort from you-know-what.
I am not surprised that people would react that way, that they would hear one way or another that their cancer MIGHT have been instigated by this HPV virus and this MIGHT improve their chances of success with treatment, but reading some of the posts I could almost hear "Wahoo!" over the internet connection, a sort of "I'm gonna live! Sorry about you, sucker!" thing going on, at least to my sensitive ears.
I kept quiet because we all need our ropes of hope, if you will. Far be it from me to snip at those.
I am not HPV-positive, gravey, and am frankly glad that I am not, as it means I did not pass this on to my wife nor, potentially, from what I am reading above, to my children.
I am not HPV-positive, gravey, and like any number of others you might find on this site and in this board, I am alive now more than four years since my diagnosis and treatment.
As a cancer survivor, gravey, if you are inclined to worry, there are lots of things you can worry about other than something you cannot control and which may, in the end, have nothing to do with your survival: concentrate, gravey, on what you can control.
Don't worry, be happy.
Take care,
Joe
Joe,
We are certainly not celebrating that my husband was HPV positive. We are however using the knowledge to help prevent myself, being the wife, and our children from contracting this virus as it is known to cause cancer. Certainly one who is not HPV positive does not have a lesser chance of survival than those who do. I know for myself that since there has been an increase in HPV related head/neck cancer we wanted to know for our own knowledge.
Absolultey concentrate on what you can control but also know that knowledge is power.
Donna0 -
HPV Relatedsoccerfreaks said:"Don't worry, be happy"
I was frankly surprised by some of the seemingly smug posts here and elsewhere in the board about HPV, as if an HPV-positive diagnosis was a reprieve of some sort from you-know-what.
I am not surprised that people would react that way, that they would hear one way or another that their cancer MIGHT have been instigated by this HPV virus and this MIGHT improve their chances of success with treatment, but reading some of the posts I could almost hear "Wahoo!" over the internet connection, a sort of "I'm gonna live! Sorry about you, sucker!" thing going on, at least to my sensitive ears.
I kept quiet because we all need our ropes of hope, if you will. Far be it from me to snip at those.
I am not HPV-positive, gravey, and am frankly glad that I am not, as it means I did not pass this on to my wife nor, potentially, from what I am reading above, to my children.
I am not HPV-positive, gravey, and like any number of others you might find on this site and in this board, I am alive now more than four years since my diagnosis and treatment.
As a cancer survivor, gravey, if you are inclined to worry, there are lots of things you can worry about other than something you cannot control and which may, in the end, have nothing to do with your survival: concentrate, gravey, on what you can control.
Don't worry, be happy.
Take care,
Joe
Hi Joe,
Not sure if you are referring to me specifically or not, doesn't really matter. But if it were interpreted as I was saying HPV related cancer survival rate was any better than non HPV related that was not the intent. All that I have read and heard mainly say that HPV related cancers tend to respond well to treatment. I have no specifics or data to back that up. As you say, there are plenty of survivors both HPV and Non HPV I'm sure.
As for having HPV derived cancer, I have never heard or read anything related to passing that on to spouses or siblings. My son was concerned for him because his father is a non-smoker and contracted throat cancer. He was merely trying to find out if it was something that could be hereditary or for preventive measures, not because he was concerned I might have passed it on to him.
If I'm not mistaken, we all have cancer cells as well as HPV cells in our bodies. What causes those to turn on or become active I do not know, and I'm not sure if the medical community really knows for sure at this point.
Cancer is cancer, and we all have dealt with it or are dealing with it, that's why we are here.
We share our experiences and communicate as best we can. I don't think anyone here should take what is said as a professional medical view point. I certainly don't. I get what information I can and consider it for what it is, someone else’s experience or view of what they know, or have gone through.
Sorry if I offended you or anyone else here, that was certainly not the intent.
John0 -
And, it's important to remember ...Skiffin16 said:HPV Related
Hi Joe,
Not sure if you are referring to me specifically or not, doesn't really matter. But if it were interpreted as I was saying HPV related cancer survival rate was any better than non HPV related that was not the intent. All that I have read and heard mainly say that HPV related cancers tend to respond well to treatment. I have no specifics or data to back that up. As you say, there are plenty of survivors both HPV and Non HPV I'm sure.
As for having HPV derived cancer, I have never heard or read anything related to passing that on to spouses or siblings. My son was concerned for him because his father is a non-smoker and contracted throat cancer. He was merely trying to find out if it was something that could be hereditary or for preventive measures, not because he was concerned I might have passed it on to him.
If I'm not mistaken, we all have cancer cells as well as HPV cells in our bodies. What causes those to turn on or become active I do not know, and I'm not sure if the medical community really knows for sure at this point.
Cancer is cancer, and we all have dealt with it or are dealing with it, that's why we are here.
We share our experiences and communicate as best we can. I don't think anyone here should take what is said as a professional medical view point. I certainly don't. I get what information I can and consider it for what it is, someone else’s experience or view of what they know, or have gone through.
Sorry if I offended you or anyone else here, that was certainly not the intent.
John
... that if 88 percent of all HPV-related H&N cancer victims are alive after five years, that means that 12 percent aren't. I remember more than one post on this and other boards from the loved ones of those who were in that 12 percent. Surely, those of us whose tumors were HPV-positive don't think that we're any better than those whose tumors weren't. And any one of us could be in that 12 percent, or whatever the operative figure is these days.
Me, I'm happy that my tumor was HPV-positive, and as I've mentioned before, I practically did cartwheels when my lead doc told me.
But we're all in this together, a community of people who've been through or are going through hell -- and who are determined to come out the other side and beat this beast.
--Jim in Delaware0 -
Have to Admitdelnative said:And, it's important to remember ...
... that if 88 percent of all HPV-related H&N cancer victims are alive after five years, that means that 12 percent aren't. I remember more than one post on this and other boards from the loved ones of those who were in that 12 percent. Surely, those of us whose tumors were HPV-positive don't think that we're any better than those whose tumors weren't. And any one of us could be in that 12 percent, or whatever the operative figure is these days.
Me, I'm happy that my tumor was HPV-positive, and as I've mentioned before, I practically did cartwheels when my lead doc told me.
But we're all in this together, a community of people who've been through or are going through hell -- and who are determined to come out the other side and beat this beast.
--Jim in Delaware
I was disappointed to hear that I was HPV negative. In my head, it meant I had tougher odds to try to beat. Thought it was hilarious that I was hoping I had a "social" disease. Still think it's a hoot that after years of yoyo dieting, I step on the scale at the doctors' hoping I have not lost weight. Go figure.0
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