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HPV Status

luvofmylif
Posts: 344
Joined: Sep 2012

Just wanted to say that I never thought how saying that HPV postive status has a better prognosis could affect and be hurtful to some on this site. I realize now that it could be a discouraging comment if you arent' hpv positive. We are all in this together no matter the status and I am sorry to have ever offended anyone. So, could luck to all of us who find ourselves in this battle , no matter the circumstances of our individual details.

Praying for all.

Joan

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I've also probably made the HPV faux pas, and am better for learning from it.

on the other side of the coin, I've sometimes been [perhaps unreasonably] irritated and discouraged by the "I'm feeling great and now I'm off to party with jumbo shrimp and dancing girls" posts. meanwhile, a lot of us are still enjoying biopsies and facing tough battles ahead, and it's hard to see happy happy vacation-land in the near future.

I do realize that the "I'm eating fresh lobster and drinking martinis" postings are not meant to be hurtful.
but there are a lot of emotions when one is fighting the beast, and it's true: one person's encouragement can be another's discouragement.

luvofmylif
Posts: 344
Joined: Sep 2012

you are correct. We are all in our own places with our own cancer issues. I struggle everyday with all this. Some days are good, some not so good. We all just have to grasp what good we have when we have it

hwt's picture
hwt
Posts: 1843
Joined: Jun 2012

I think we all try to be mindful of each others emotions and always post with the best of intentions. As patients and caregivers our emotions run wild. You never know what the perception of an intended post will be. No doubt posts of vacations, foods, HPV determinations, etc, are written as inspirations. It can be hurtful to think you posted for encouragement only to find out some one was discouraged by your post. We all have good and bad days. I'm afraid if we didn't have the opportunity to share all of our positives, this would be a sad site to visit. In fact, my primary purpose in staying with the site is to encourage others and when I can, let them see that there are good things in life yet to come. I'd like to think I can give something back to those that encouraged me thru my dark days.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

I would say it the same way. For me it is great to read how someone is eating again, going to restaurants, cutting woods, fishing,... or just post an info of surviving for 5, 10 or more years withour recurrence. It is encouraging and giving me hope that my dad can reach that too one day.

But if things "go south" it's probably hard to read how someone has just posted his NED. We are all just humans and variety of feelings is normal.

And about this HPV status... My Dad is HPV negative and probably really got his cancer due to heavy drinking when he was younger (now for 12 years in abstinence) and smoking (now 5 years out). Maybe it was caused by reflux, who knows... I don't worry myself with that too much. I only know that his destiny will be what it will be. For example my colleague's father-in-law fell off the roof few weeks ago and luckily survived because he didn't fall to the ground immediatelly but got stucked on gutter. It made his fall much "softer". On the other side I know a guy who was standing beside one house and a small stone fell of the roof and killed him. It was really little stone but it hit him on the just right place in head and killed him immediatelly. So, it is just someone's destiny and you can't do anything about it.

longtermsurvivor's picture
longtermsurvivor
Posts: 1765
Joined: Mar 2010

any more than saying what stage the cancer is in when discovered. This is a site to discuss things. No need to pull punches like this. Personally, I have never had HPV testing. I have been through this stuff three times now without it. I will either live or die, and statistics don't mean much to me personally.

best to you.

Pat

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Don't be so hard on yourself, speaking of HPV status or treatment outcomes is not hurtful to anyone I'm sure. Each of us is very appreciative of all of the advice and support on this site. We may have questions about our status versus another persons status but that's just normal, we can't help but compare...that's human nature. I personally was HPV negative and learned that treatment was just as successful for me as a diagnosis of HPV+
while I did get concerned that I wouldn't have as good results as those who are positive, I was never offended by anyone or anything said about results.
Don't think twice about being offensive, I truly don't think anyone on here has been.
Have a great day everyone!
Billie

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

is a negative emotion that is never the correct response. We each evolve through stages in this cancer journey and on this board. You will evolve at your own pace here. Anyone offended by resentment must deal with that negative emotion individually, overcome it, evolve, return here and only then do we all move a little forward together.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I believe we were discussing discouragement, not resentment. big difference.

if I have been led to believe that an HPV+ diagnosis improves my prognosis...an HPV-minus test could easily produce disappointment and discouragement at my own prospects--without malice or ill-will toward HPV+ folks.

likewise, the thought of the jumbo shrimp that I can't enjoy sometimes causes discouragement. as in, "it's been four months already, what the f**k is wrong with me?" more power to those who are years out from treatment and can eat them.

anyway, pulling our punches in hopes of not hurting somebody is impossible. but we can sometimes remind ourselves that we're not all walking in the same shoes. and we sure as hell aren't all moving forward together.

and I'll tell you, I've said some boneheaded things here that have certainly caused negative emotions. still trying to figure out this compassion thing.
cheers.

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

Hi Joan,

It shows compassion that you are concerned, but please don’t worry about your comments about being HPV+ or HPV-. Each of us is VERY aware of the bullets we dodged and those we did not. I would have been happy to never have cancer, but it wasn’t to be. I hope I’ve made the correct choices in this endeavor, but only time will tell. To survive this mess, it all comes down to the right treatment at the right time and how well our bodies respond or don’t to fighting the cancer and cancer can be insidiously difficult to treat successfully every time.

Today (at this time), I feel most grateful that I can put food in my mouth without gagging and wanting to spit it out as fast as I can. One month ago I could not say that. The displeasure was so great I never thought I would eat normally again. There are other H&N warriors further out of treatments then I am and still can not eat normally. With due respect to (all) those with damaged taste buds, I want the newbies that identify with me, to understand that while I had strong doubts, things are getting much better. Not bragging, not luck, it just is.

Best,

Matt

cureitall66's picture
cureitall66
Posts: 844
Joined: Aug 2012

I believe all of our emotions run high here. I will say I've never taken offense to anything anyone has posted. There are emotions running all the time....good or bad.

I'm glad to see happy things posted, as I love positive things. However, I understand that there are days that are rough for others and I love to see everyone come together to help one another....and I think we all respect that.

We usually can tell by the topic posted where the need is and whether we can or want to respond.

At the end of the day all we want is for ALL to be cured of this cancer!

God Bless us ALL during this journey,

Cris

katenorwood
Posts: 1812
Joined: May 2012

Joan,
Everyone has different experiences through the journey. I have never found anyones posts discouraging....sometimes I can hear their frustration...sometimes their joy. I am blessed to have found you guys (this site) for encouragement and just the experience of knowledge that is shared here. You know we all may have different dx's....but are still fighting the beast. Thanks for sharing your thoughts ! Katie

luvofmylif
Posts: 344
Joined: Sep 2012

I also enjoy everyones inspiration and knowledge. And, Vanessa if you read this you tickled me with the recounting of the man who fell off the roof and survived and the man who had greater injury from a pebble falling on him. It goes to show you that you never know. I have to remind myself that. I always am saying what if...like what if I would have sent my husband to the Dr in March when he ran a fever. Maybe we could have caught this cancer months earlier. It's in the past and I need to put a period behind it and move on.
Joan

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

I've never found any posts here discouraging...some have been scary, but discouraged....no. I have no idea if I'm HPV+ or not, they never tested me as far as I know...or if it makes that much difference...does it? Do they know, or is that a therory for now?

This site kept me floating when...had I been left to do this alone, I might have sunk at least emotionally...the people here carried me thru my treatments with practical knowledge and things to try that not a single Dr. ever mentioned...and cheered me on during the good days...

I guess I missed something in one of the threads, I was surprised by this one...AHHH, but I suffer from chemo brain, so "missing something" ain't anything new in the last few months.. :).

p

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I resemble many of those comments regarding, fishing, vacations, eating and food postings.... I also was HPV+.

I am not apologising for any of my past, current or future posts.

It is what it is the way I look at it.

I am sorry if someone is offended or torked off. But the way I look at it, I was in the same situation of many of those here.

I have earned my right to post my recovery and success, in my thinking, whether taken that way or not.

I also offer many other experiences and contribution...

But even through my treatment, I maintained humor and positive thinking...that is who I am, my personality.

My intent is to give those going through treatment, the future vision that they also will get through the misery they are going through. And once again life will be good and for the most part normal again.

As for HPV, the way I look at it personally, and always mention...cancer is cancer, no matter how you got it, and it doesn't change the Tx plan.

So the only apology that I will make is that if I have offended you, for that I am sorry... But it's not going to change who I am or how I will post in the future.

So if my postings of such has offended, I can only say, don't open them or respond to them.

Healing, recovery and getting through relies heavily with having a positive attitude and maintaining a sense of humor.

If you get offended because someone else now is doing well and you aren't, that's not the attitude to have....

I can understand when you don't feel well and my "how great I'm doing posts" pops up it can pizz you off... That is a random situation and feeling that should only be brief, and over with...

If you are always pizzed off and miserable, that's a different issue...

Anyways, my ramblings and thoughts....

JG

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

nobody called you out. there are plenty of drooling food postings to go 'round, and plenty of "HPV+ diagnosis is better" comments.
I've apparently been part of the cause of 'HPV discouragement', and from that I have learned that our postings can have unintended consequences.

but it's public forum, so we all get to say what we want.

regardless...I, for one, plan to be a bit more careful about what I say about HPV.
Erbitux too, for that matter. I recall you getting bent out of shape in an erbitux thread when I mentioned that I chose it because it's unlikely to cause kidney damage. you actually felt compelled to post a list of erbitux side-effects, remember? anyway, apologies for offending... ;-)
and as long as there are threads like today's about Permanent PEG tubes, I will refrain making a lot of drooling food postings. but that's just me.

this is a place with a lot of emotions--some pass easily, and some don't pass at all.
particularly for those who don't actually get better, and don't return to normal. knock on wood, may we all recover.

lastly, please don't put words in my mouth, or make assumptions that you know anything about my sense of humor, attitude, condition, or prognosis. you know little about me, and personal comments of that nature are not very dignified.

hope you feel better. remember, positive attitude!

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I wasn't directing my comments at "you".... I was just saying you as in anyone in general.

I remember the Erbitux post, not the specifics though.

I too have been called out way back when by someone because I also re-iterated the standard internet preception/sites/comments that say cancer treatment results tend to respond better for those Dx as HPV+.

In reality, I have since concluded that cancer is cancer....

We all bring something into Tx differently, results from that will differ.

I personally don't feel any more confident in my recovery because I was HPV+... I still had cancer.

I kind of thought you might take my comments as directed toward you..they weren't. And I tried to convey that when posting, but apparently not very well....

We all have our buttons that tend to be a little sensitive one way or another.

I have mine from some postings..., and no the PEG is not one, LOL... Well, maybe the thought of mandatory PEG insertions...

Anyways, I'm not upset, and I did not take your comments as directed toward me specifically, LOL... even though I did laugh once I started reading many of the listed sore spot topics, LOL.

In general, I think (though maybe misguided)...that it's a majority/minority thng... I can accept that occasionally some of my posts might upset a few. But in the big picture, I think that the majority have a positive experience/emotion from the majority of my posts...and I can live with that.

Oh, and since I wasn't aiming my comments at "you".... I wasn't questioning your personality...though you are a bit more reserved than I, LOL....

OK, that was my teasing.....

I also did not place my reply under your comment. It was under the original poster's comment...again, another attempt to not direct it toward you, or anyone,

Best,
John

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

For me I am so very thankful I found everyone here. Yes we are all at different stages in the fight, but we all are fighting it. I look forward to the days when my husband is able to eat, walk and enjoy life again. I am glad to read posts of vacations and eating. I want that for David and myself as well. I am also thankful for those people who are going through the treatment process. Who share the stress and anxiety of being in this lonely scary place. To have others comment when we are down and give encouragement. Thank you for your support. We are all human and we all have good and bad days so yeah we might get on one another's nerves; however, when I need something or just need to vent, I come here to the people who understand and accept me for who I am. Thanks

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

well, I did bring up food... ;-)
you've helped a lot of people here, so keep on doing what you're doing.

last thing I'm gonna say on HPV (for now, lol)...

you and I are both HPV+, and had different treatments and different experiences. so right, individual treatments and prognoses, HPV+ means little. no doubt there are tons of HPV-neg folks who are having an easier time than I am right now.

main reason I care about being HPV+ is that it tells me how the beast got into my throat. I can almost narrow down the When and Where I got infected. the Who, not so much. lol, ouch.
And of course knowing how many of us are HPV+ is a step in eradicating the virus. it's so preventable, at least for our kids.
so I'll probably keep talking about it. but I'm gonna shout that it has no bearing on tx. cancer is cancer.

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

Hey, I am HPV+, I took Erbitux and I am starting to eat (again, finally, never thought it would happen) and I want to talk about it. I also want my old voice back, my old neck and tongue (minus the cancer), my whiskers, but not the extra weight.

I do not know any of you, but I recognize many of your writing and for the most part enjoy the diverse content of the posts. Some of the information is way over my head (thank you for Longtimesurvivor), but most I can figure out (to some degree). Many times when I read someone’s response to a post you can tell that person understands what is being asked and really nailed the answer.

The only posts that really bug me are the advertisers that swoop in unannounced and push all the new threads down. As for HPV, let the controversy continue.

Matt

Erbitux is (can be) hard on Liver

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

HPV negative, that is. I hope you don't stop talking about HPV status. Was/am I jealous when I read that other people have HPV positive tumors? Sure. Do I wish they were negative like me? No way. Every time I saw the "HPV plusses are luckier" comments when I was in early days on the cancer cruise, I was jealous, and I was reminded that I was in the "not as lucky" group where that was concerned, that's true. But I always liked the idea (and still do) that if some newbie is coming in who's HPV positive, they'll be greeted by people reminding them that statistically, things should go well for them.

Same thing with eating victory stories - when I couldn't eat, or could just eat a few things, I saw the stories as inspirational tales shared to help bolster me, and give me a glimpse of what I had to look forward to. Luckily for me (unluckily for my waistline), I was able to attain most of my food goals.

yensid683
Posts: 225
Joined: Apr 2012

I can understand the resentment that some could feel for those who's SCC is hpv+, as the common wisdom is that is is a more survivable version of this awful disease.

I also understand that there can be resentment by those adversely effected or still deep in treatments when one of our family can trumpet their NED.

I recall when, during the worst of my treatments, when I felt so terrible and thought that life would be a continual living hell, I read these threads and posts and heard so many people bring good news to these pages of their NED, of their recovery, their first forays into the world of eating real food and I felt jealous, but at the same time I felt that I couldn't wait to join them.

Their stories, comments and the posts in reply gave me hope that I could beat this, that one day I too would be able to eat those foods that I so love, that I too would feel normal again, that I'd be able to hold my wife and we'd be able to plan on more days, weeks, months and years together.

I'm making progress, I'm NED (just), but still dealing with saliva and swallowing issues, and eating real food is limited to a few items, but I look at it as "I'm EATING". I'm alive, I'm able to participate in life, I'm able to be with my family and my friends. I celebrated my NED with a vacation and I don't feel bad about it, I'm hoping that EVERYONE on these pages gets to do the same thing, yet I'm pragmatic enough to understand that not all of us will.

Cancer is an absolutely horrible disease, it strikes people who don't deserve to face the trials and tribulations that it brings, but I'll celebrate every one of us who beats the beast, no matter how it happens or why.

I pray for all of us, the new to these pages, those deep in treatments feeling so terrible (and their caregivers) and for those of us who're moving out into the sunshine again. Life is worth living, no matter how much of it we have

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

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Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

The last thing in business you want at upper management are "yes men" (these are poeople who agree with everything the CEO or those in charge say...and never play devils advocate).....I would imagine in terms of this site and our medical doctors we too don't want "yes men" ...in other words we want knowledge but we also want individual experiences.

I always appreciate statistics, facts but I also very much appreciate individual experiences and especially those stories of "beating all the odds" ..the human spirit and will to live is an amazing thing. I use the stats and medical knowledge to be informed and try and get the most proactive /aggressive medical care I can....and if the news is bad or alarming then that old famous movie where the guys says "Dang the torpedos" is the attitude I try to take on .....

I have no doubt everyone on this site cares for and is always concerned about each other ....and if I too ever say anything that hurts, discourages or offends....I hope I would be given the benefit of the doubt that was not my intention.

I sometimes feel concerned about telling people I"m out cutting wood or hunting or feeling good bc someone just posted bad news on here or is in pain....it breaks my heart when my online family is hurting and it makes me happy when others are doing great ....I think often times I get upset or angry (maybe frustrated is a better word) bc I feel that hurt and helpless feelings.

The news lately with Katie, KT TEacher, Barefoot Bob / Mike luv4lacross, Denis, Nick and so many others weighs on me daily (hope if I left someone out they know I care) ....but I think too my experience with cancer has led me to a new group of folks I can relate with. I never was sick hardly a day in my life until my dx. Flash back one year and I have had the cancer dx, emergency gallbladder removal, hernia surgery, the recent nodes in the lungs scan and ganulated glass that we will have to monitor closely (rescan in 6 weeks)...but I refuse to give up or give in. When I am down or concerned I not only turn to you all on this site (pm and public posts) but I also turn to my family and my God.

I have a strong desire to not just go on with my life once recovered, now that i have seen the pain and suffering of such a group as H&N I want to help them......I can relate....I want to give back those who have helped me .....

I truly hope to get the local thrift store going in the next year......I want to provide gas cards to those in our community who must make the long trip to Boise (100 miles away) 1 or 2 times a month ...I want to help with coordinating rides and doing other things with volunteers...our local community spends a ton of fund on McPaws (local animal shelter) which I don't begrudge and I am happy ...but I see a HUGE human need and though I love animals too .....I care for poeple more.

We had a great amount of support (unsolicited) from family and even my co-workers and the ownership whom I work for....I want to pay it forward. :)

Best,

Tim

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