...and my husband has SCC. I never imagined that our lives could change so much in such a short amount of time.

Back in July my husband, Ariel, noticed an enlarged lymph node, which was treated with 3 rounds of antibiotics. It reduced in size, but never completely went away. In September he underwent a CT scan, then on 9/28 he had the node removed.

That was the day that my 44 year old, non-smoking, non-drinking powerlifting health nut husband with a 52 inch chest and 19 inch biceps was diagnosed with cancer. Ironic, huh? Cancer doesn't care who you are.

He had his tonsils removed on 10/3, along with many biopsies taken at that time. No primary was found.
We traveled to UVA to consult with Dr. Reibel there, who advised radiation and no neck disection or chemo.

Here we are a month later - today is day 14 of 33 radiation treatments. I have lurked here for a couple of weeks, educating myself from your experiences. I am so grateful to those of you who have shared your stories - I have gained so much insight and knowledge that doctors and literature haven't supplied.

Each day is harder and harder for us. We are reaching a point where taste and nausea issues are interfering with nutrition, and I have never been more scared in my life. So far hubby has had no mouth or other pain, just the loss and altering of taste, fatigue and nausea.

I have been reading about the link between HPV and oral cancer. I had cervical dysplasia 15 years ago, and it seems too incidental that my husband has developed oral cancer. Have any of you approached your doctors about submitting tumor samples to John Hopkins for testing? Not a single doctor has mentioned the HPV link to us - one more thing I'm grateful to this site for. We would like to know if my husband's tumor tests HPV positive, if only for the small comfort of knowing that these tumors respond more readily to treatment and have less chance of recurrance.

I check in here several times a day, and I apologize for waiting so long to jump in. I just have felt so overwhelmed and emotional that I didn't know if I could
open up and let anyone in.

Karen

Karen,

We all totally understand your emotions..no apologies needed. Actually, you were very smart to lurk, educate yourself, get your thoughts together and then post as you are asking well informed questions. I will let the experts pipe in on the HPV stuff but please know that we are all here to get you thru this and believe me, sometimes you will feel that this is the only place you feel comfortable "opening up."

Your husbands loss of taste is inevitable as well as the fatigue, but the nausea should be something that your docs can help with...nausea alone makes everything else very hard. Please push and ask for help about that until you find something that works.

Cyberhugs from all of us here....Deb

Here's information on submitting tumor samples to Hopkins, courtesy of Gail Mac, whose husband is part of a HPV vaccine trial there:

http://pathology.jhu.edu/labservices/hpv.cfm

All the best,
Leslie

Karen


I find that alot of Drs still don't seem to acknowledge that HPV cause cancer anywhere except the cervix..Well I should say that has been my experience. It is NOT my personality to say "I TOLD YOU SO " but you can believe that I have printed studies and information on here and John Hopkins and anything else I could find to show them. As well as my Ins co , regarding the gardisil vaccine for my boys.

So my advice is for you to mention it to your Drs. As well as the naseua issue ,they do have meds for that . I did not undergo Rad treatments so I am not personally familar with alot of it..only from my reading on here.

Lurking on here is not a bad thing and it is hard to open up and let people in to such a vunerable part of our lives, many times though and most of us are glad we did , you will meet some amazing people on here and find alot of answer and a tremedous amout of support !!

I have often said ...as I too am young , female, non-smoker, rare drinker, was in good health (before all this ..now is another story ) , That only strong people come down with this ..we always say why and how...but everyone I have met with this disease ..whether it be Oral, cerival, breast or anywhere are the most amazingly strong and courageous people I have met and usually the most humble ( that may come after the fact ) even though alot of times as Pts and caregivers we don't see our strength ..it is there .

Just know that we are all hear and many of us ..ALL HOURS OF THE NIGHT !! I am one of them !! ((((HUGS)))) to you !


Shar

Shar,

Can you share the article on the HPV vaccine? I have a 16yo son and would like more information.

Karen,

Stay positive! The people on here are the best! I don't know how I would have got through that first week without them.

frank,


I will look and see what I can find. I actually spoke to people at Merck the maker of the drug and I worked for Planned Parenthood and KNow that the HPV virus effects both men and women and does NOT discrminate on the basis of sex..MEN just don't have a cerivx. they get the same warts and all the other problems. and they carrier and spread the disease just the same and now we see that Men get oral cancer from it .

It is like Chicken Pox ..it is a Virus ...Boys get that vaccination !! But I will see if I still have any paper work or If I sent it all !!

Shar

Many thanks for the warm welcome! Hubby and I spoke to the rad doctor today - he prescribed Compazine for nausea. I almost think that we have a touch of something, since I have been queasy myself. I told him that I think I'm having sympathy radiation symptoms!

I spoke to one of the nurses about sending a tissue sample of the cancerous node to John Hopkins for HPV testing. She looked at me like I was crazy, then told me that they had never had a request like that. She suggested that I have the surgeon who removed the node make that request, then promptly made herself scarce. Is this such an odd request? I know we live in a basically rural area, but surely if I can do a little research and find out about the HPV-cancer link, then medical personnel could do the same.

Ariel and I have a 19 year old daughter and an 18 year old son. I want to do anything possible to spare them this agony when they get older, and now firmly believe that the HPV vaccine should be available to both of them. I spoke to several people today about this and no one knew much about HPV in general, much less about the cancer connection. It makes me so angry to think that such lack of knowledge is causing such tragedy.

Ok, I know - enough soapbox. Just know that I appreciate you all and this site so much.

Karen

Karen


YOu are NOT on a soapbox anddont ever feel as though you are ..just Speak ON !!! . As far as your daughter the gardisil vaccine is avail for her !! As for your son , well that is s touchy subject . Mostly I am finidng Ins that wont pay for them . If and I mean IF you can find Dr that will do it for you , you son can have the vaccicnation. MY ped is willing to do it . However it is a series of 3 shots and it can range from 600- 1200 I think somwhere in there . There is why I am fighitng Ins CO. At this point I dont have that Kind on Money . I have 5 kids so as you can imagine.

2 are girls so they are covered. the oldest is only 14 so right now I think we are pretty safe as far as HPV exposure. Luckily for me I was pretty familar with HPV before all of this started . And I still have a good freind who is a Clinician in the GYN field with it , so I can always ask more questions in the area. She isnt to familar with this area ..but she def tries to find things out for me !

http://www.oralcancerfoundation.org/presskit/pr/hpv_vaccine.pdf

http://www.oralcancerfoundation.org/HPV/index.htm

There are PDF files on the research that you can print out at the bottom of the page and you can listen to a Q & A with Dr. Gillison there also.

I am writing an editorial for a magazine this week on the vaccine and I will post it to the web site as soon as I am done with it. It deals with fears of the vaccine(s) and speaks to vaccination of males as well.

BRIAN!!
I am floored....I'm sorry, but I've been so absorbed in my husband's personal fight with this cancer, and the occasional "nagging" fear that my HPV infection 25 years ago may have been a factor..........I didn't realize how much research had been done.
THANK YOU...............THANK YOU.......
This disease will owe it's demise to you!!!!!
Love,
Mandi

Mandi, It is not known at this date if the virus remains in someone for decades dormant, (and if so where) or people just get re-infected over and over again from repeated exposure to it because it is so ubiquitous in our world. I spent a great deal of time with Dr. Gillison on the phone today reviewing what we do NOT know, as OCF is funding a very preliminary look at some of this with her. Given all that we do not know for sure, you would be wrong to beat yourself up for something that there is no way of knowing if it is even possible.

Hi Brian,
It is my understanding that the vaccine is still in the testing stages for males and also for females over the age of 26. I know that in my office the vaccine is not yet offered to males at all- though I can tell you that when it is my boys will be getting it!
Of course, since the vaccine is considered relatively "new" to the public, we still meet with some resistance from parents who feel that we over-vaccinate our children. If I could only direct all of those people to this site.....
I did speak with our offfice rep from Merck who was familiar with the link to oral cancer, and she was hopeful that the vaccine would be available to males soon. Looking foward to all the new info you can give us.
Liz

Vaccination has saved millions of lives in the US alone.
Just to give you a idea of their impact:
Diseases that have been effected by vaccination radically, stated first - the number in the year which the maximum number of cases occurred and second, the number of cases in 2004-05, then the reduction (negative percent) between the two.

Diptheria, 207,000 - 0 - -100%
Hepatitis B, 200,500 - 17,358 - -74%
Hepatitis A, 35,200 - 4,500 - -79%
Measles, 900,000 - 66 - -99.9%
Pertussis, 265,000 - 25,000 - -87%
Polio, 21,300 - 1 - -100%
Rubella, 58,000 - 11 - -99.9%
Congenital Rubella, 20,000 - 1 - -100%
Tetanus, 1,700 - 34 - -94%
Hib (<5 years) 20,000 - 30 - -99.9%
Varicella, 83,500 - 11,250 - -87%
Pneumoccocal Disease, 64,000 - 37,775 - -41%

This is a pretty impressive record.

Karen,

I am also concerned about the possible connection between HPV 16 and oral cancers. When I underwent a hysterectomy 12 years ago there was some concern that the cervical dysplasia I'd experienced over the preceeding 6 years might be caused by HPV, but because no cancer was evident no follow-up to determine the cause was done. I have two daughters (22 and 18) and agree that I would(and will) do anything to prevent their having to experience the trials and tribulations of oral cancer.

Hang in there. Your husband is half-way through the "abuse" of radiation therapy. His road to recovery is a long one, but with a supportive spouse like you his travels will hopefully be easier.

Karon

PS - I was a "lurker" too!

The medical oncolgist I went to suggested testing for HPV. She was certain my tumor would test positive as I didn't have any other risk factors. I really didn't care because I knew it wouldn't affect the course of treatment. She just went through the lab that hospital used; she didn't have to send it to Johns Hopkins. At first it came back as a "high risk HPV" and it took a couple more days for them to "type" it. I ended up with HPV-33. I'm not sure if the virus originated with me or my husband, but I do know it would have been contracted more than 30 years ago (that's how long we have been in our relationship). I was surprised my primary care physician had that I was HPV positive in my records and never told me. I do get a pap every year, but I could have missed a year if I wasn't aware that I was at risk.

Simple Gifts - while it is not unheard of, this oncogenic version of HPV is not the usual suspect in tonsillar cancers. Would you consider sharing your medical history and biopsy results with a researcher ( data protected by laws) at anaother institution? If you will, please email me and I will put you in touch with them. My email is in the little rolodex card next to the top of the post.