Head and Neck cancer from HPV

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Head and Neck cancer from HPV

by Steph214 on Thu Aug 24, 2017 11:26 PM

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My husband is 47, healthy,  swims a mile several times a week,  surfs with his boys and was diagnosed with cancer from the HPV virus.   It took a while to get the diagnosis.  We thought the swollen lymph node was due to a cold, but it kept getting bigger.  Our primary sent him for a CT, which didn't provide an answer.  So off to a general surgeon who sent him for a biopsy.  Needless to say this process cost us time (2 months). The biopsy came back squamous cell carcinoma.   He has never smoked a day in his life.  Within 2 days we were at Mayo in Jacksonville with the HPV diagnosis and surgery within 10 days.  He had a neck dissection for the lymph node that had now doubled in size and the robotic arm down his throat to remove the main rumor on his tonsil.  We thought we were done.  No such luck!  The tumor was so large it had started to leak so even though they found no cancer cells after surgery they wanted a "mop up 30 radiation and 6 chemo (cisplatin).  We drove an hour and a half each way every day.   Sometimes we were there for 15 min. Rad treatment and sometimes all day for blood work and 3 hours of chemo.   I thought it was he'll.  Wrong again, we are 7 days out. The day he finished we were in the ER because he was gagging and throwing up uncontrollably. Then the mucus started and kept coming.  My husband who is a very strong person was reduced to tears.   Our doctor at Mayo ordered 7 days of fluids because he couldn't keep things down.  I have probably called the nurse everyday since we have finished treatment.  I can be a bit of a pitbull when it comes to my family.   He has every med I could get them to prescribe. Today, along with the mucus, started a dry cough.  We have codeine, which I read would help, so in the PEG tube it went.  I haven't heard him cough in 30 min.  Woohoo!  Everything goes through the PEG,  water, formula, meds.  He swallows and chokes which begins the coughing fit.  Tomorrow we go to the accupunturist.  He started this at Mayo, not sure it worked, but even if he felt a little better,  I'm in!  If anyone has any new ideas on the mucus issue I would love to hear them.  I have been stalking all if these blogs but most are several years old.  I finally decided to join in hopes of stopping the hacking up of mucus.  My prayers are with all of you dealing with this.  It is a nightmare but you all are definitely the strongest people ever!  Know that to your caretakers you are amazing and heroic to get through such a difficult cancer! 

RE: Head and Neck cancer from HPV

by soonermom on Fri Aug 25, 2017 01:36 AM

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I am so sorry for your journey.  All I can tell is that as a caregiver I hear what you are saying and we had many of the same events in our home.  Some people swear by a suction machine for the mucous or Mucinex in the PEG tube.  This isn't the answer you want to hear but for us it finally came down to just getting through it hour by hour some days and keeping in touch with our treatment team.  Despite trying everything recommended the only thing that abated some side effects for my husband was time.  We kept trying everything but to be honest most of it was not a fix for him.  We also drove a long distance for treatment and I had to keep working to keep insurance.  The two weeks after treatment were the worst for my husband.  By one month after treatment he felt a little better.  By three months out he was working and talking again. The nurses kept telling us he is at the bottom of a very long pit from the effects of treatment and the climb out is going to be about as long as the journey down into the pit.  The mucous does stop and it is replaced by other things but nothing seems to bother him as much as the mucous did.  Just hang on and try to help him meet the calorie and fluid benchmarks every day.  You will have brighter days ahead.  

RE: Head and Neck cancer from HPV

by augustus on Fri Aug 25, 2017 02:21 AM

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Of all the obstacles, mucus is as big as they get. I couldn't go anywhere without a small trashcan and a box of Kleenex. Or two.  I used Mucinex some, but it only helped a little. My wife also put a dehumidifier in my room. She stayed upstairs of the house we were at and I slept downstairs in a single bed. I was too weak for the stairs and plus we thought she might get more sleep. Probably didn't, though. I was told by my team to get a wedge pillow and it helped some. I learned to sleep on my back with my head elevated. After treatment when I moved back home, I often slept in my recliner, as it would keep me elevated easier. But I never found much to combat the mucus. Just a few things to ease it some. It took months to go away.  It also probably caused as much nausea as the chemo and radiation. Mayo is a great hospital, as was MD Anderson, where we went. They have a great team at both that will have more "tricks" to help too. I ended up in ICU at the end of my treatment, but today, I am doing very well. Saliva is weak, as are my taste buds, but overall, not much to complain about. It was in ways the best experience of my life. I love my wife of 35 years even more now and we appreciate every day. 

RE: Head and Neck cancer from HPV

by atcbugsy on Fri Aug 25, 2017 10:40 AM

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Steph214,

I'm almost 3 years post for SCC HPV16 at the base of my tongue.  I was 54 when diagnosed.

Both you and your husband should use whatever means possible to get through this.  Whatever drugs are available, use them.  I would also suggest your husband try to sleep with his head elevated.  If you don't have an adjustable bed, try a wedge pillow between the box spring and mattress.  Or sleeping in a recliner so the mucus drains.  I spent several nights trying to figure out what worked for me.  The wedge pillow was uncomfortable, as was the recliner.  Between the Hydrocodone, Fentanyl, and whatever else I was on, I only slept intermittently.  I think it was more of a series of naps until I started to work my way back as the pain subsided.

You sound like a great caregiver.  Remember to take care of yourself, too.  Only after I was approaching my old self did my wife tell me she had to go on anti-depressants to help her cope.  She said she would save her crying for the shower where she knew I couldn't hear her.  It's tough for everyone.  But we're both well past that now.  We hike several times a week, I'm back to doing yard work, and aside from having to carry Biotene and being the last one done at every meal, I'm pretty much back.  Your husband will be, too.

Best of luck.

Bugsy

RE: Head and Neck cancer from HPV

by Steph214 on Fri Aug 25, 2017 03:08 PM

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Thanks so much for your reply.  Another new thing that happened this morning is that he feels like when he swallows it gets stuck and then comes back up and he has to spit. Is this another side effect that will go away or are we looking at needing therapy?  It's hard to sit and watch and not try every suggestion out there.   He is impatient which leads to frustration.  I'm am sure they all feel that way.  Thanks again for the response I really appreciate it!

RE: Head and Neck cancer from HPV

by Sdurnell on Sat Aug 26, 2017 06:50 AM

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This terrible mucus production is the body's defense in response to the damage the radiation causes the tissues in the throat.  It's pretty universal and unavoidable, just a part of the healing process.  When the mucus hit me I took a small pail and box of tissues with me everywhere, as I was constantly spitting up.

Is he able to swallow anything at all?  If so, maybe keep it to liquids and other foods that have a creamy consistency.  If he can swallow nothing at all, which was the case with me, he needs more intervention.  

But most people can swallow something.  Sometimes a swallow study is needed to determine what consistencies will be best--if his swallow mechanism has been impacted, he may need to be limited to thicker liquids.

Speech therapy can also help--my therapist was the one who ordered the swallow study.  There are exercises that can improve swallow function if that's causing him problems.

But if it's only the mucus that is keeping him from swallowing, this too shall pass.  For some it clears up within a month or six weeks, but for others it lasts longer.  You can cut it somewhat by gargling with baking soda and salt dissolved in water--lukewarm was best for me.  This concoction also can relieve pain, and it has an advantage over other remedies in that it can be used as often as you wish.

Best of luck with this awful recovery.

Susan

RE: Head and Neck cancer from HPV

by Steph214 on Sat Aug 26, 2017 02:32 PM

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Thanks Susan!  This mucus is a nightmare! I will call Mayo on Monday about the swallowing.  He is having trouble getting enough nutrition because he is bringing up the mucus which can make him vomit.  It's a vicious cycle.  I get the formula in, he feels sick, vomits and now no nutrition.  Day 9 and its like we took 10 steps backwards.  I know time will heal but the waiting sucks!  Which I'm sure you know!  

We found an accupunturist in town, so I'm hoping this will speed the process up!  At this point we have been fighting this since April (diagnosis, surgery, treatment, recovery)...it seems never ending, so we are willing to try anything that might provide relief.

RE: Head and Neck cancer from HPV

by Perfit on Tue Aug 29, 2017 04:03 PM

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Dont know where to begin in trying to help you as everyone here has already addressed the issues you are having problems with, just know that this is all normal, you are doing the right things and he is experiencing the same issues most of us have had. Keep a close eye on him that he does intake nutrition and hydration. In my case, anything that would touch my lips I would throw up, even a drop of water, I had the speech therapy as well, but for me, that didn't help, as I didn't have an issue with knowing how to swallow, my issue was with keeping anything in, I had the hydration IV's at home for a while, and daily at the hospital for another while, I finally had to be admitted to the hospital for 17 days due to malnutrition and hydration, You said he has a food tube so that should help, I didn't, until I was admitted to the hospital. To this day, 3 years after my neck dissection, I still have some mucous, I still cough & spit up a lot and still carry Kleenex with me, swallowing food or pills is not as easy as it used to be, so for some people the recovery is faster than for others, but it definitely will get better, just takes time. Stay positive, as hard as it is to do, but just knowing that this will all pass with time, keep looking forward and focus on better days ahead. Thank you for being such a caring caregiver, your husband is very fortunate, I can't imagine having this type of cancer without a loved ones support, as I did too.

RE: Head and Neck cancer from HPV

by Sdurnell on Thu Aug 31, 2017 04:39 AM

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You know, I had problems keeping formula down even before the mucus.  I was losing weight so fast, even with the tube, that I had a panic attack and ended up in the ER.  The doctor told me to try a different formula.  I got one that was more concentrated and I tolerated it much better.  You might talk to whoever is managing his feeding and see if he could try something more tolerable.  

Using a more concentrated formula (1.5 calories per ml instead of just 1) meant that when something did stay down it was more nutrition.  However it also meant I needed to get more water too, but I never had trouble bolusing water.

Wising you all the best,

Susan

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