hi there all,

Well hello hello hello and yes I am new very first post and was diagnosed on 12/21/13 HPV Throat cancer so still learning and seeing the docs - see a doc tomorrow and then the next day but have an appt at Mayo next tues and will determine the best course of action hopefully for remedy then. I am learning and balancing life and still feel ok but pretty lax and lazy physically and to think I ran a 5k in November maybe this all caught up to me now...WOW I never expected this and want to even blame my last boyfriend sad to say and myself.

Glad I am not alone but am concerned about so many things and how I will respond to the future and future treatments as I have been sober for almost 30 years and have a concern about all the drugs in my system and work and supporting a teenager thank God I have insurance.

Quick question though...how do you get out of private to post a new message as I struggled with that thanks but your posts seem most relevant to things now at the stage in the game.

Welcome to OCF! I suggest you read and educate yourself about not only throat cancer but HPV as well. It is not helpful putting blame on yourself or anyone else for a very common disease (HPV). Many people will have HPV at some point in their lives and most will successfully clear it from their systems. Only a tiny percentage will have the HPV go on to cause serious health problems. There is still more unknown about HPV than is known which is why research is so important. With contributions, OCF helps to fund research programs on HPV and has for many years.

I sent you a PM.

Hi Muffy:
Welcome to the family. You found the right place as we have thousands of members who either have some form or oral cancer or are caregiver to one who does and they are a very supportive lot. Whether you need technical information, or just mental support, this is the right group.

Do one thing for me from the outset, first confirm that it is HPV-16 that you are positive for. You mentioned being HPV positive, but there are a LOT of different strains of HPV (like 200 strains if memory serves) and only 1 (I think) causes oral cancer. If yours is not -16 then your journey will likely be a different one than if it is.

As I understand it, you WANT yours to be HPV-16, as that form of cancer is much easier to treat with better outcomes than if it isn't. So, the fact that you have an STD isn't all so bad as you have a better chance of staying alive. I am HPV-16 positive too and in the beginning I went through pretty much all the same things you are going through right now; who gave it to me, was it my girlfriend, my ex-wift, who. Once you go through that phase of the journey you will realize it doesn't really matter who gave it to you ... you have it now ... so what do you need to do to move forward in a positive way with the rest of your life. From my discussions with several doctors and on this forum it does no good to confront your ex. He may not even know he has it, ie it may not have manifested it's presence yet in him. In fact, my docs told me to not discuss it with past people you have been involved with as you don't know who gave it to you or who you may have given it too. This may sound insensitive, but apparently 98% of the population gets HPV at some time in their life and like 96% of them clear it normally via their immune systems. We are just some of the lucky few that 1. got HPV-16 and 2. our immune systems didn't clear it normally. So, long story short, it accomplishes nothing to tell past lovers about it as even if they got it, they may have also cleared it already, or be part of the group that it never turns to cancer in. Now, don't you feel lucky to be part of such an exclusive group. (LOL).

I have to run right now, but will write more later.

Take care, start reading the forum and the website, you have a steep learning curve to negotiate before treatment begins, but we will be here for you every step of the way.

Tony

Welcome to OCF! Sorry to see you here but also very glad to see you are here so early in your journey. There is LOTS of good info to read here and get up to speed. Feel free to ask questions as there are surely some who have some ideas for you. You will always find comfort here and feel amongst those who do KNOW what you are going through. Don

Okay, I'm back, so a little more.

Save yourself a bunch of grief and just flush away all this wonder, worry, anything emotional about HPV-16. I promise you, thinking about it a dead end street. If you are going to spend any time at all thinking about it, think about what you are going to do to be able to have future involvements with other people, and that will lead you squarely into being involved only with other people who have it too. That leads you to the STD dating sites, like STDmingle and PositiveSingles. Ask me how I know this (I'm just a couple of months ahead of you in the journey). Your alternative is a life of celibacy, and that is a real drag. At first I thought I was destined for aloneness until I googled std dating sites.

Do realize that knowingly infecting someone is I believe a felony, not that you would ever want to do that.

Lastly, your new passion for protecting your son. At 15 he may already be too old to get the shots, though I could be wrong on that. To prevent HPV infection, they absolutely want the child to have never had the opportunity to become sexually involved. That's why they push for like 11 and 12 year olds to get it. Of course, I know nothing about your son, but it's not impossible for a 15 year old to have already been involved. If he has been involved, and worse yet, already been exposed, then I think the shots absolutely won't work. Again, let me reiterate, I'm not accusing your son of anything, just passing on to you the little I know about the vaccine, all of which probably needs to be confirmed by another source.

The last thing I will pass on to you is to locate the user named Bart on this forum. He has a lot to teach you about how to prepare your mind for the upcoming journey. It's all about not allowing yourself to worry ... about anything. It's way harder to do than you think, but worry will make your journey way more difficult. Some of it is keeping yourself busy doing things that are enjoyable, some of it is learning how to "not attach to outcomes", and there are other parts too. Learning how to do that successfully made my journey through treatment way easier. Yes, I do know other forum members who didn't do it successfully and at least one of them is now worried that they are clinically depressed and hasn't posted on the forum in like 2 months, when they needed the support we provide the most.

If you want to see how a journey can go my introduce yourself and treatment threads are identified in my signature. Go find them and read. It's not the only way things go, but it's a place to start.

I've said enough. Digest all this, then start asking your questions and letting us know how you are getting along on a regular basis, we really do want to know.

Tony

Hi Tony,

Thanks for your candid testimony as it helps and I appreciate it. You were right on target with many of my current thoughts in this process and kinda feel a bit bad as there is man in my life ( more like a FWB) and he knows and we been together once since I learned once but my spirit feels quiet now and think I just end it or put it on the shelf as I need to get through this as I dont want to consciously infect others and what is amazing is how quiet our population is about sex anyways - My God we all eat drink and poop and have have sex too.

Yea I cannot change the facts and the great news is my son has been / is abstinent and did get the vaccine so I am pleased about that.

I to am a HPV positive so that is good mainly the biggest factors are dealing with unprofessional hospital admins that drive me bonkers and my lax energy and the emotionally whammie to the acceptance of all of this as I forge ahead and make determinations on the best course of treatment actions.

It is my right tonsil so here is a maybe ignorant question but My doc said to stay away from oral sex which I have done but do you think that means all other is green light go or basically anyone having any interaction with me is subjected to the virus regardless act?

Best thing I heard from one doc is only 15% of smokers get lung cancer. "so I would not stop being intimate as such"
Yes part of the lucky club I am now and a female at that so that is a strange twist too.

Have a good night gotta do normal things laundry and have two doc appts tomorrow but am excited that have an appt at Mayo next tues. Either way my treatment should start in less then two weeks.

Any preparatory thoughts on eating or anything to help my ease would be greatly appreciated. Thanks

Hello Muffy, I'm sorry you too have had to join this club.
I agree with Christine that you should do further reading on HPV.
My husbands Oropharyngeal cancer was HPV positive. It has absolutely been no big deal for either of us. Why would it be. We have been monogamous for over 30 years. Who knows where or who from he contracted this virus? It may have been me. Who knows. Who cares.
At least 80% of the population will catch this virus at some time in their lives. Most clear it. Some catch it again, clear it again. In A very small percentage of people, their immune system does not clear this virus and many years later they develop a cancer. It is not possible for your most recent boyfriend to have been the cause of your HPV cancer.
So don't beat yourself up. Feel free to kiss your cat, your partner , your son and whoever else you want to. You won't give them HPV.
Glad you are getting on with getting this treated
By the way, the HPV vaccination is available to all under the age of 26 years
Tammy

Hi Muffy:

In preparation for treatment - eat, eat a lot, and then eat some more, eat all the time, as if you were trying to get FAT. You WILL lose weight in treatment, that's a given. What you don't want to do is to lose too much weight and that is entirely possible. Radiation is tough on the body, add chemo and it's even worse. My treatment nurse said cancer is hyper-metabolic. It eats a LOT of calories; it eats many of the calories you take in, leaving little to none for your normal metabolic functions.
The treatment process eats even more calories, making it very difficult to stay ahead of the curve. Many a day I lost one whole pound. Five to seven pounds in a week will scare your nurses to death.

So, don't minimize or ignore what people are telling you when they say eat, eat, eat. As you get further into treatment it just gets worse. Right now while you still have an appetite and can taste food, EAT. You will lose the taste soon enough and with that goes your appetite. Throw in with all this that as you get further into treatment the side effects will get worse, ie throat burn, mouth dryness, mucositis. In general your mouth and throat just hurt. It's hard to eat when it hurts. I am through with treatment (going on 2 weeks now), but because I still have no taste, I also have no appetite, so I have to just force it down every day. Fortunately, I was a plump little dumpling before treatment started, so I had some extra to lose without becoming mal-nourished. If you lose too much (my nurses said 10% of your body weight) they WILL put you on a PEG feeding tube. You don't want that. I reached 10% on the last day of my treatment and my nurse nutritionist said she was glad to get rid of me because I didn't show enough remorse about continued weight loss.

Now, if you are a slim, trim, underweight little thing eating for you is even more important as you don't have any extra you can afford to lose. Okay, enough about eating, I hope I have gotten your attention. I didn't listen closely enough, I am lucky that my weight loss didn't cause some serious medical conditions that required hospitalization as many on this forum have faced. I shouldn't say this, but I love the look of the new, skinny me. Like I said, I shouldn't have said that.

As for continued sex, including oral sex, you didn't just get this thing yesterday (HPV). Anything you have, you have likely exposed your FWB too already. Even if you have exposed him, that doesn't mean he will get oral cancer. My info says that 90+ percent of the adult population gets exposed to some form of HPV during their lives and that most of them clear it normally via their immune system. So, even if you exposed him, he might be one of the lucky majority that clears it normally anyway. then again he might be part of the unlucky minority that it turns into cancer for (like you and me).

I am curious about why your doc said no more oral sex. I definitely think that is a question you need to ask him why about and for him to explain in detail. Be prepared to write down what he says so you completely understand his reasoning. I know there are a lot of people here on the forum that would love to know the answer to that question. Hint, hint: please tell us when you know.

I think the prudent thing to do is to explain all this 90+ percent stuff to the FWB, so that he can make an informed decision about what is best for him and his future. It might also be beneficial and show concern on your part if you took him with you to the doctors office and let the doc explain it to him. Don't be surprised if he decides to call it quits. If he doesn't, then maybe he's worth more than being a FWB. And having a caregiver during treatment is always a good thing. Your son can do some of it, but another adult would be even better.

Okay, my candid button is tired. If you have more questions, ask. I'll keep up with your thread, others will too. We will continue to show you why this is the best cancer support forum family on the planet.

Hi guys Here's a question for you. because my cancer was HPV 16 does that mean the virus is still with me or did the HPV cause the cancer and then cleared my system as it normally does, should I abstain from my frisky wife
Hi muffy welcome to the family

That is an interesting question that I don't know the answer too. Did the HPV reside only in the cancerous tissue that was removed.

Even if some tumor was still present and the rest of the tumor was killed by radiation and or chemo, does that mean the virus was also killed. I think viruses are among the must durable things on the planet, so I would have a tendency to think no, it's still present.

Now as for your frisky wife. I think you have probably had the virus long before you developed cancer. So, that means your wife was likely exposed to it long ago. Will she get cancer from it, or will she be a member of the large majority that clears it normally via her immune system ... who knows.

Since she has in all likelihood already been exposed, what's the use of closing the henhouse door after the wolf has already eaten the chickens. I remember one other guy on this forum who has been HPV positive for like 25+ years and maintained a normal sex life with his wife (including oral) for all those years and she has never developed oral cancer. All that proves is that she is likely a member of the clear it normally majority -or- that in her case the virus has an incredibly long gestation period.

I wish I could give a definitive answer, it will be interesting to see what others have to say.

Tony

I think there was a study done in the last 2 years on this subject.
I remember that the result showed that no spouse was harmed by continuing a couples normal sex life.
Paul B do you remember or have the link to this?
I really do not see why this is an issue. Kris was obviously exposed many years ago. I continue to be well.
Tammy

Muffy, I would like to comment on something you wrote...... it may be true that only 15% of smokers get lung cancer .... BUT..... did you know 90% of lung cancer is caused by smoking? Thats quite a different way of looking at it isnt it?

FWIW, there must be other ways of passing this virus because mine is the HPV, I only had one boyfriend before my husband, and oral sex was NEVER part of the picture. My doctors are baffled. This is just to say. . . There is so much we don't know that fretting is pointless. I still wrack my brain to see if there was some vector of transmission I have overlooked, and I still come up blank.

Hope your treatment goes well and you can move past this misery!

It could have been that one boyfriend or your husband - it's a virus - it becomes active and then resolves - HPV is a blanket name for over 40 different strains. My sister in law had never been sexually active until she went away in university and did a course in Europe - she met a guy they became involved (they long distance dated for several years - got engaged - broke up) after they broke up she was dx'd with HPV because she had some kind of an outbreak. It only takes once and sadly HPV doesn't show up on any tests except for a cervical cancer screening in women. Or a biopsy of cancerous tissue. Many people who caught HPV can be asymptomatic - and never know they've been exposed.

Google cannabis, HPV and oral cancer. You'll see a lot of info about a possible no-sex connection to passing the HPV virus by passing an HPV saliva tainted cigarette. It makes sense. Think about it. If HPV lives in your throat and you're coughing from inhaling hot smoke, the virus could surely be moved to the tip of your tongue or on your lips where it could survive long enough to take a warm, wet ride to someone else's mouth.

French kissing is a vector.

There are a few cases which HPV-16 were found on fingers too' and read of one that was HPV-16 cancer.

There is HPV+, there is also having an active HPV virus, and there is p16 positivity. I know the test for the presence of HPV is indicated by a p16 cell stain.
Can somebody please explain this? I am really confused now

Muffy - your last post on any forum was 4 days ago. Did you get abducted by aliens or something? I know 4 days isn't that long, but as a newbie I was posting questions everyday in the beginning.

Tony

HPV+ means, at least on this Board, that our cancer cells tested positive for the HPV virus likely meaning that our cancer was primarily caused by the virus taking control of our cells division.

P16 positivity...p16 is just one strain of over 200 known strains of the HPV virus and is the one that causes most of oral cancers.

HPV is indicated by a p16 cell stain... that's how they test for the presence of HPV at the cellular level, by a stain.

http://www.oraldna.com/oral-hpv-testing.html
How reliable is this Oral HPV testing?
Is there any test I could take to find out for sure whether or not I have the high risk strain in my mouth or tonsils?

At this time these tests have not been deemed very reliable.

If you are concerned you have HPV, remember most of the adult population will have this at one point or another without any ill effects. Only a fraction of a percentage of HPV+ people will go on to experience any HPV+ caused major health concerns such as cervical cancer, anal cancer, oral cancer, or genital warts. There is a vaccine available to both men and women ages 12-26, of course its best to get this series of 3 shots young prior to exposure. At this time, more is unknown about HPV than is known and there is testing being conducted to learn more info. It takes time and an enormous amount of money to fund these projects. OCF has been there from the start funding Dr Maura Gillison's research on HPV.

p16 is the tumor suppressor protein or gene. HPV-16 is the high risk HPV variant that mostly causes oropharyngeal cancer.