I think I'm dying

On Jan 26, 2012 7:59 PM ErthWlkr wrote:

GDW -

Always great posts and very supportive - thanks for putting in the time and effort!

If I can just add to what you say -

HPV can go dormant for many years. That's a quality of the virus - similar to herpes zoster, which can reactivate many years after an initial infection of chicken pox and then surface as shingles or Bell's Palsy for example.

In your case, you may have been infected but your body cleared it. But not in your husband's case. Different people, different genetics, different immune systems. Whether you were infected or not will never be known.

What activates or reactivates the virus can only be guessed at. Most certainly if the immune system is suppressed by illness or injury, the risk of activation increases. But what actually is the key, what is the "inciting" factor, is unknown. Otherwise, we would find some way to block the keyway entrance and prevent activation. Similar to breaking a key inside of a lock so another key won't enter it to open the doorway.

Why it attack oral areas is just another particular quality of this particular viral strain of HPV-16 or 18. Keys fitting locks.

Cancer is at once terrifying and incredibly fascinating. Given nourishment, a tumor can grow and live forever. The causes of cancer can be drilled all the way down to the particular genetic code of the particular person it infects. Recently yet another genetic biomarker was discovered that can aid in developing the treatment plan ( http://tinyurl.com/7pv6j9j "" target="_blank" rel="nofollow">http://tinyurl.com/7pv6j9j " target="_blank" rel="nofollow">http://tinyurl.com/7pv6j9j ).

There are many more discoveries and advances to come - and hopefully treatments that won't beat us up as badly as chemo and radiation do.

Onward we go - wishing you all continued recoveries and long lasting health!

- Jeff

Jeff ~

Thanks for your very imformative post and contribution to my mission to educate people about what HPV is - and more importantly - what it isn't.  You know, I asked a local news anchor to do a story on the epidemic of HPV related throat cancers we're seeing in men in their 50s.  (That statement comes from our ENT, he used to see 1 or 2 a month.  In the last 7 years, he sees about 5 a week!)  My intent was to get the message out there to:

1. Make people aware and give them information about the disease and treatment - until my husband got it no one we knew had ever even heard of tonsil cancer except in heavy smokers/drinkers- there's misconception number 1!

2. Help reduce the stigma of HPV as and "STD" and all of the misinformation around it - so people can make informed decisions about the vaccine - not decisions based on some crazy notion of protecting against HPV is like encouraging underage sexual behaviors, and

3.  Help anyone who's out there dealing with it to understand it is nothing to be embarrassed about. And people are.  Can't tell you how many times people would say to us "throat cancer?! Is Mark a smoker!?" You know, like somehow if he was a smoker, well then he got what was coming to him, right?  I'd always respond with "no, Mark has never smoked.  His cancer is virus based, HPV, just like cervical cancer in women."  You should see their faces.  Nobody wants to talk about it.  I say we talk about it! 

Anyway, the local anchor I know - she wouldn't touch the story.  Too controversial.  Didn't want to put out there that a respected local businessman had an STD that caused cancer. 

So you get my point.  Ignorance, misinformation and judgement will continue to plague us for now.  Maybe someone famous will come forward and make a difference - it seems that's what it takes sometimes.

Thanks for listening all!  Much love ~ GDW

On Jan 26, 2012 8:09 PM GoldDustWoman wrote:

Hi David,

Thanks for your reply.  I was not referring to all cancers - I was just making the point that HPV based tonsil or throat cancer doesn't occur just because one has had oral sex with an HPV infected person.  It's much more complicated than that.  And I get concerned when people attach a stigma to HPV related cancer - like somehow if you are a "good person" and make "moral" life choices you are safe from this virus.

No one on this thread is attaching that stigma to HPV so I wasn't directing that comment to anyone here in our discussion. I was thinking of comments I see elsewhere and worse yet, the way the current epidemic of this virus is sometimes presented in the media.  Just doing a little venting.  :)

Much love ~ GDW

 

GDW

the article I read was I think from a cancer or doctor email service. They expect by 2020 ORAL cancer to exceed cervical cancer in numbers of patients.

Oral cancer in teenagers is on the rise because the believe (as Bill Clinton does) that oral sex is not sex.

David

On Jan 26, 2012 8:43 PM Diamond_David wrote:

On Jan 26, 2012 8:09 PM GoldDustWoman wrote:

Hi David,

Thanks for your reply.  I was not referring to all cancers - I was just making the point that HPV based tonsil or throat cancer doesn't occur just because one has had oral sex with an HPV infected person.  It's much more complicated than that.  And I get concerned when people attach a stigma to HPV related cancer - like somehow if you are a "good person" and make "moral" life choices you are safe from this virus.

No one on this thread is attaching that stigma to HPV so I wasn't directing that comment to anyone here in our discussion. I was thinking of comments I see elsewhere and worse yet, the way the current epidemic of this virus is sometimes presented in the media.  Just doing a little venting.  :)

Much love ~ GDW

 

GDW

 

the article I read was I think from a cancer or doctor email service. They expect by 2020 ORAL cancer to exceed cervical cancer in numbers of patients.

 

Oral cancer in teenagers is on the rise because the believe (as Bill Clinton does) that oral sex is not sex.

David

I had not heard or read that oral cancer is on the rise in teenagers.  Do you have the link to that article?  I'd like to read it.

On Jan 26, 2012 8:25 PMGoldDustWomanwrote:

On Jan 26, 2012 7:59 PMErthWlkrwrote:

GDW -

Always great posts and very supportive - thanks for putting in the time and effort!

If I can just add to what you say -

HPV can go dormant for many years. That's a quality of the virus - similar to herpes zoster, which can reactivate many years after an initial infection of chicken pox and then surface as shingles or Bell's Palsy for example.

In your case, you may have been infected but your body cleared it. But not in your husband's case. Different people, different genetics, different immune systems. Whether you were infected or not will never be known.

What activates or reactivates the virus can only be guessed at. Most certainly if the immune system is suppressed by illness or injury, the risk of activation increases. But what actually is the key, what is the "inciting" factor, is unknown. Otherwise, we would find some way to block the keyway entrance and prevent activation. Similar to breaking a key inside of a lock so another key won't enter it to open the doorway.

Why it attack oral areas is just another particular quality of this particular viral strain of HPV-16 or 18. Keys fitting locks.

Cancer is at once terrifying and incredibly fascinating. Given nourishment, a tumor can grow and live forever. The causes of cancer can be drilled all the way down to the particular genetic code of the particular person it infects. Recently yet another genetic biomarker was discovered that can aid in developing the treatment plan ( http://tinyurl.com/7pv6j9j "" target="_blank"

There are many more discoveries and advances to come - and hopefully treatments that won't beat us up as badly as chemo and radiation do.

Onward we go - wishing you all continued recoveries and long lasting health!

- Jeff

Jeff ~

Thanks for your very imformative post and contribution to my mission to educate people about what HPV is - and more importantly - what it isn't.  You know, I asked a local news anchor to do a story on the epidemic of HPV related throat cancers we're seeing in men in their 50s.  (That statement comes from our ENT, he used to see 1 or 2 a month.  In the last 7 years, he sees about 5 a week!)  My intent was to get the message out there to:

1. Make people aware and give them information about the disease and treatment - until my husband got it no one we knew had ever even heard of tonsil cancer except in heavy smokers/drinkers- there's misconception number 1!

2. Help reduce the stigma of HPV as and "STD" and all of the misinformation around it - so people can make informed decisions about the vaccine - not decisions based on some crazy notion of protecting against HPV is like encouraging underage sexual behaviors, and

3.  Help anyone who's out there dealing with it to understand it is nothing to be embarrassed about. And people are.  Can't tell you how many times people would say to us "throat cancer?! Is Mark a smoker!?" You know, like somehow if he was a smoker, well then he got what was coming to him, right?  I'd always respond with "no, Mark has never smoked.  His cancer is virus based, HPV, just like cervical cancer in women."  You should see their faces.  Nobody wants to talk about it.  I say we talk about it! 

Anyway, the local anchor I know - she wouldn't touch the story.  Too controversial.  Didn't want to put out there that a respected local businessman had an STD that caused cancer. 

So you get my point.  Ignorance, misinformation and judgement will continue to plague us for now.  Maybe someone famous will come forward and make a difference - it seems that's what it takes sometimes.

Thanks for listening all!  Much love ~ GDW

dear gdw

information is what we all need, i support your knowledge, good luck, debra

Guys; lets not turn this thread into an HPV thread. He didn't even ask for HPV information; he has no clue if his cancer will test positive.The information was for a questions for the doctor- that's it. I also posted it as it's own post & if you'd like to continue this conversation in my thread; feel free

or add it to the HPV post we already have.

He can go read it in one of the other posts if he actually needs it.

On Jan 26, 2012 8:55 PM Roselvr wrote:

Guys; lets not turn this thread into an HPV thread. He didn't even ask for HPV information; he has no clue if his cancer will test positive.The "" target="_blank" rel="nofollow">http://positive.The " target="_blank" rel="nofollow">positive.The information was for a questions for the doctor- that's it. I also posted it as it's own post & if you'd like to continue this conversation in my thread; feel free

or add it to the HPV post we already have.

He can go read it in one of the other posts if he actually needs it.

Roselvr ~ you beat me to it ~ I was just going to post that this is Johnny's thread and I don't want it to turn it into another discussion!  We got a little off track there with our passions.  Thank you my friend for bringing us back ~

Much love ~ GDW

I copied over every reply; please bring this discussion to the HPV post. Thanks

http://www.cancercompass.com/message-board/message/all,62645

Hey Rosel and GDW, thanks for suggesting to re-route the hpv discussion to the hpv thread.  (I came out out hpv+, btw)

I know Pop-Pop had surgery, but I don't recall any others (this is a long thread). Did I miss someone?  For those of you who did NOT get surgery, why were you talked out of it, or was it even offered?  

I'm told with this robotic surgery that I'm going to come out looking pretty normal (my neck will be slightly thinner on the one side with a nice long scar and skin numbing due to lymph node removal surgery), and within a few days after my surgery my feeding tube will be out and I will be working on swallowing with full swallowing and speaking virtually guaranteed.  No pec (peck?) tube ever. 

I'm good with a scar, especially because the alternatives seem pretty severe and potentially long term:  No saliva, long-term feeding tubes, etc....  Worried that I might be missing something; the surgery sounds too good to be true.

On Jan 27, 2012 1:07 PM JohnnyO wrote:

Hey Rosel and GDW, thanks for suggesting to re-route the hpv discussion to the hpv thread.  (I came out out hpv+, btw)

I know Pop-Pop had surgery, but I don't recall any others (this is a long thread). Did I miss someone?  For those of you who did NOT get surgery, why were you talked out of it, or was it even offered?  

I'm told with this robotic surgery that I'm going to come out looking pretty normal (my neck will be slightly thinner on the one side with a nice long scar and skin numbing due to lymph node removal surgery), and within a few days after my surgery my feeding tube will be out and I will be working on swallowing with full swallowing and speaking virtually guaranteed.  No pec (peck?) tube ever. 

I'm good with a scar, especially because the alternatives seem pretty severe and potentially long term:  No saliva, long-term feeding tubes, etc....  Worried that I might be missing something; the surgery sounds too good to be true.

Johnny; My hub had surgery- radical neck dissection by Dr Keane at Jefferson. My hubs neck is fine; you can't see his scar; Dr Keane put the cut in a skin crease. I have photos & can share via email. We're very happy with the healing; Dr Keane did a really great job; he has no pains from nerves; etc being cut; some here do have nerve pain years later. My hub took saliva pills till about 1 1/2 years out. The only pill he is left with is like Nexium due to the feeding tube.

I don't understand putting the feeding tube in short term. My hub did not need it until 2nd week of radiation. He did not use it after the big surgery.

Send me a message if you want my email.

I'm sure I'm horribly biased in my opinion because my 58-year-old otherwise healthy husband died 8 weeks ago from tonsil cancer (squamous) which at diagnosis only one year ago had spread to only one lymph node.  He was told he had an excellent chance of being cured.  He was treated with surgery and radiation.  He was even restaged to a lower number following surgery.  Twelve weeks after surgery, they discovered his lung had mets -- 21 sites, amazingly enough.  He began chemo but was told he was no longer curable. 

After being told it can take only one cancer cell to escape into the body and that this form of cancer is very aggressive, my thinking now is that he should have had it all at the start -- even though one malignant node is considered very early stage in spread to neck.  By "all," I mean surgery, radiation and chemo -- right at the get-go. 

Just one cell in my book is one cell too many. And chemo is systemic as opposed to the other treatments which are site specific.

I know there are others who may disagree with me and others who have been cured without this, but in our instance, my husband was told that he was extremely healthy...he was not on any meds for any other condition...never even got colds or flus...  did not smoke...did not drink.. and one year after diagnosis, he is gone. 

I just wouldn't take the chance.  Once it spreads, it's not a good thing at all.

You stay optimistic, healthy and do all you can to beat this damn cancer.