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Life Unexpected

Posted on November 26, 2012, 11:00 PM
Life Unexpected

HPV-Associated Throat Cancer Catching Up with Non-Smoking Men & Women
By Pamela Tom

Last December, my husband Jeff reported difficulty swallowing. His physician attributed the symptoms to “post-nasal drip” and prescribed a nose spray. If only it were allergies.

After three months, as the lump in his throat persisted and normal eating became painful, my husband finally saw a Head and Neck specialist. The doctor immediately identified a malignant tumor hidden at the base of Jeff’s tongue that was not visible to the untrained eye.

It was HPV-positive throat cancer. And it was too late for surgery. We were in shock. Jeff is athletic and active. He has never smoked. How could he have throat cancer?

We learned that HPV, the human papillomavirus, can sit dormant in the body for decades. It’s usually contracted when you’re young – in your teens or early 20s – when people become sexually active. The virus can be transmitted through vaginal, anal, or oral sex. In other words, anyone can get it.

Pandemic

If you’re thinking, “Not me!”, the Center for Disease Control (CDC) reports that at least half of the sexually active population will get HPV at some time in their lives. Sometimes your body can fight it off, but certain strains of HPV can turn into cancer by mutating your body’s cells.

As a result, more and more unsuspecting middle-aged, non-smoking men and women are getting HPV-related cancer in the throat. In women, HPV cervical cancer is more common (and more well known), but women can also get HPV throat cancer. By 2020, the American Society of Clinical Oncologists says HPV-associated oropharyngeal cancer (cancer of the throat, tongue, or tonsils) in men will surpass cervical cancers among women.

It’s a new cancer battle, especially for boys and men. More than 7,000 new cases of HPV-associated oropharyngeal cancer are diagnosed each year in the U.S., according to the CDC. Our doctor told us 80% of middle age men carry the HPV.

Treatment

Doctors are still learning about the most effective treatments for HPV throat cancer. More research is needed. In the meantime, they can only treat HPV throat cancer with the same treatment plans used for the aggressive forms of throat cancer usually caused by smoking and alcohol.


Pamela’s husband, Jeff.

Two weeks after Jeff was diagnosed, he began seven weeks of daily radiation and weekly intravenous infusions of Erbitux. Multiple side effects increased as the treatment became cumulative over time: fatigue, weakness, nausea, constipation followed by the inability to eat solids and consequently, massive weight loss. With his throat out of commission, he relied on a feeding tube that dripped five to six cans of formula into his stomach each day.

The treatment left his neck with the ultimate sunburn: red, blistered, burnt. The inside of his throat – raw, tender, fried. Jeff was unable to eat solid foods or even milkshakes 60 days post-treatment. Water tasted metallic. While he could smell the aroma of cooked foods, one bite was revolting. Today he can eat again but he has a perpetual dry mouth due to the radiation damage on his salivary glands so and foods don’t always taste as they should

But Jeff was lucky. At the extreme, HPV throat cancer patients may lose their tongue, jaw, and voice, if not their lives.

Prevention

The prognosis for HPV throat cancer is good if it is caught early. There is an 80-90% cure rate. Yet so far, there is no formal screening for HPV in men like the Pap smear for women. The CDC recommends Gardasil, the HPV vaccine, for girls and boys but it’s not common for pediatricians to vaccinate boys. That has to change.

The best defense is knowledge about HPV prevention and how to look for early signs of HPV-associated throat cancer. If you experience difficulty swallowing or a lump in your throat, see a Head and Neck specialist immediately.

Like AIDS and HIV in its infancy, HPV carries a social stigma because it is sexually contracted. Often HPV-associated throat cancer patients don’t always want to step forward. If you are an HPV-associated throat cancer survivor or know someone who is battling it or has lost the fight, now is the truly the time to Stand Up To Cancer. We have no time to wait.

I am an ordinary person living with an extraordinary disease in the person I love. That’s why I just launched a community campaign for a multimedia website called HPVandMe.org and made this video. The purpose of the site is simple: to help reduce HPV infection and throat cancer, and to increase support and advance the critical research necessary to fight this pandemic. It’s my way of helping while feeling so helpless during my husband’s journey with HPV throat cancer. I hope you will find it a compelling resource.

Be aware. Be vigilant. Be well.

Pamela Tom is a San Francisco Bay Area journalist and founder of hpvandme.org, an informational and support website in development. Contact her at: .(JavaScript must be enabled to view this email address)


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Comments

Posted by Julie Hagey HAGEY | December 06, 2012 9:57 PM

Pamela, I will certainly be following your website! My husband is 65. He is fit, healthy, strong, never smoked, 40 years vegetarian, organic wonderful husband—also has base of tongue squamous cell carcinoma. We are 3 months post treatment in that yukky time where nothing tastes good at all and we are still on the feeding tube. We have hope…headed back for the 3 month post treatment visit in late January. Currently we are searching for any type of food that is remotely appealing the him. I am sure you two can relate!

Posted by Pamela | January 08, 2013 9:46 PM

Julie, My best wishes to you through this “yukky” time ... our doctor says it takes at least a year to regain weight and strength. In the meantime, the internal body is busy trying to heal itself. I hear your frustration. Another wife of a patient has a blog in which she recommends dietary advice and recipes. Check it outL http://caretakingthroatcancer.wordpress.com That .has been a challenge for us too ... I’ll make a great dinner and he doesn’t really like it. The nutrition “leafy greens” are unappetizing to him. Hang in there. I’m working to build HPVANDME.ORG for prevention, treatment, and research news and will post updates on FB: http://www.facebook.com/hpvandme I hav.e learned of two post-treatment clinical trials that your husband may be eligible for. Write to me at: .(JavaScript must be enabled to view this email address)

Posted by lesa steele | January 24, 2013 3:56 PM

Dearest pamela and jeff- my name is lesa and i am a 49yo hpv pos throat cancer/bot woman (married 25yrs and hetero so this “dirty” disease” affects all!).  I had surgery 2 weeks ago and where a plug of my tongue, the lymph nodes on my right neck (it spread in 3 mos once it took hold) and a tonsil were removed.  Now like jeff, i face chemo/radio but a good prognosis for which i am thankful.  This is a disease that takes away dreams…quickly.  thank you for posting. I pray the word spreads.  This “dirty” disease must come out of the closet!

Posted by Elaine reynolds | January 25, 2013 10:34 AM

My husband Kenny, had squamous cell carcinoma of the right tonsil that had spread into his lymph nodes. When we finally were diagnosed it was already in stage 3. Of course he had 7 weeks of daily radiation, surgery to remove some of the cancer which paralyzed the right side of his tongue and his right shoulder blade, all kinds of chemo including 5fu,erbitux,etc. Then we had surgery again to remove a tumor that had come up in the right side of his neck and one on his collar bone, more chemo, then finally surgery to remove the whole right side of his neck, fatty tissue, lymph nodes, muscle ,the only thing they left on the right side was the cartoidid artery.Well back in November of 2012 we were going every week to have chemo and one wednesday after treatment and when we arrived home ,we recieved a phone call from Hospice. Come to find out the Oncologist had called in Hospice without our knowledge. Needless to say we went to the dr and sure enough his cancer was too far gone at that time. He passed in Dec on the 20th 2012. He had lost all ability to eat ,could not swallow anything at alland was oxygen at the time. The reason for me writing to you is to tell folks that a radiation boost is an option if needed and not to wait too long before allowing the Drs to put in a feeding tube. My husband waited too long and then it just wasn’t an option. People please if you noticed any kind of pain, swelling, changes in your voice or swalloing, please please get to the dr. preferably a head and neck specialist. As we found out too late, this cancer is not too uncommon at all and it can and will affect peole who have never smoked or ingested alchol at all ,like my husband. He was one of the good guys who worked to take care of his family and stayed clear of tobacco ,alchol, and drugs. Again if you have any symptoms at all please don’t hesitate , get to a dr. Thank you P.S. my husband was only 55 when diagnosed and 57 when he passed.

Posted by Theresa Rossmann | January 25, 2013 12:21 PM

My Mom was almost 70 when she went to an ear nose and throat doctor from having a sore throat for a long period of time and affecting her voice and doctor found the tumor on the back of her tongue. She was stage four throat cancer when it was found and began treatment of chemo and radiation. She went into hospice too and hosparus. She had a blood transfusion and she passed Aug. 2011 just after her turning 72.

Posted by Cathy Virnoche | January 26, 2013 5:43 PM

Pamela, Thanks for your hard work spreading the word about HPV and throat cancer.  As you know my husband and I both have had throat cancer.  His was 13 years ago and I am 9 months post treatment.  We are a very rare couple.  My cancer was on my tonsil and HPV positive.  They didn’t test for HPV when my husband had his cancer.  But doctors think his may have been related to the HPV virus too.  And one thing my husband said…he was thankful that he had it because it made me more aware that when my lymph nodes on my right side of neck did not go down after a cold I knew I had to be checked out.  My first CAT scan did not show anything, but my glands stayed the same so I persisted in finding out by going to the ENT.  So if anyone has swollen glands that don’t go away….be persistent!!  I’m here today because of being diagonised early, but still stage 3. I am still working on finding foods that I can eat without having trouble.  My husband can eat anything I hope I can get to that stage too.  This is a tough cancer to go through for both the patient and the caregiver!!  Keep spreading the word about vaccinations for HPV!

Posted by Sandra | February 15, 2013 9:06 AM

I read and it seems like I am dreaming. I lost my son to complication of Bone Marrow and Non Hodgkin’s in 1991. I was his care taker and it was the saddest thing I mother could go through.
Now, just yesterday, We learned about the details of my husband’s HPV Throat Cancer. Reading your comments and Pamela’s article at the huffington post, I am writing to you all for tips on what to look for and do to make this easier on him and myself. Being informed and have some knowledge on what to do, something helps.
My body is going into being numbed. I just need to know what to do. And, I am feeling very scared to the thought of seeing him suffering. He is strong, happy with a beautiful soul.
I am requesting your support in sending me the most helpful links that you came across. Time is of an essence now and that will be a way to ease up my desperation trying to find the relevant information. If you know of a site that has a list of things to know while my husband goes under treatment, it will be greatly appreciated.
I will keep present the comment about inserting the feeding tube earlier rather than waiting to be too late.
I am concerned about his weight loss and not being able to function. Did you see your husbands managing being OK during the day the second part of the treatment? He manages his small business and I don’t know anything about it. That is our source of income. And, I am asking him to train me in these two weeks before treatment starts. Please share with me your daily experience to have a sense of what to prepare for.
I really appreciate Pamela your SU2C campaign.
You do have a supporter!
Thank you all,
Sandra

Posted by Pamela | March 12, 2013 1:43 PM

Everyone, thank you so much for your comments.
I appreciate your personal stories. The more we talk about HPV throat cancer, the more we can help others. My thoughts and support to all of you. I apologize for not responding sooner. Jeff and I moved after 15 years in our family home so I’ve been consumed with all of that BUT i have been assembling content for hpvandme.org and look forward to launching as soon as possible. Until hpvandme.org is launched, I will post updates and these testimonials on our facebook page: http://www.facebook.com/hpvandme

Sandra, your message illustrates the pressing need to assemble good information in one place to aid patients and caregivers. I hope you are managing ok and I’m sorry I was unable to reply until now. Radiation and chemo treatments are cumulative so as you probably now realize, the second half of treatment is when the patient is at his or her worst. It also takes a couple of months to even begin to recover from the treatment. We are now nine months out of treatment ... Jeff is able to work but tires very easily and is still 35 pounds lighter than before. His doctor says even now, his body is still using everything it’s got to heal itself and so he won’t gain weight for about another six months. In terms of income, that’s tough. Perhaps family and friends can help during this down time. If your husband is self-employed but paid himself with a paycheck (payroll taxes and deductions), you may file a state disability (SDI) claim. For future reference, self-employed people may also choose to pay for self-employed disability insurance. Check with your state’s EDD office.

Posted by Pamela | March 13, 2013 12:08 PM

Everyone, thank you so much for your comments.
I appreciate your personal stories. The more we talk about HPV throat cancer, the more we can help others. My thoughts and support to all of you. I apologize for not responding sooner. Jeff and I moved after 15 years in our family home so been quite consumed BUT I have been assembling content for hpvandme.org and look forward to launching as soon as possible. Until then please see updates: http://www.facebook.com/hpvandme

Sandra, your message illustrates the pressing need to assemble good information in one place to aid patients and caregivers. I hope you are managing. Radiation and chemo treatments are cumulative so as you probably now realize, the second half of treatment is when the patient is at his or her worst. It also takes a couple of months to even begin to recover from the treatment. We are now nine months out of treatment ... Jeff is able to work but tires very easily and is still 35 pounds lighter than before. His doctor says even now, his body is still using everything it’s got to heal itself and so he won’t gain weight for about another six months. In terms of income, that’s tough. If your husband is self-employed but paid himself with a paycheck (payroll taxes and deductions), you may file a state disability (SDI) claim. For future reference, self-employed people may also choose to pay for self-employed disability insurance. Check with your state’s EDD office.

Posted by pamela | April 11, 2014 12:58 PM

Hi
My husband almost mirrors your husband in what you have just said.  HOwever two years after my husband recovered I was also diagnosed with throat cancer in my tonsil and lymph nodes also from HPV I have had treatment and am now two years plus clear.  Hope you and your husband are well.  Just wonder how many other couples get this and feel not enough awareness is made for people.  Keep well best regards to you both

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