We just heard we are meeting with the oncologist next week as well as a radiologist, I guess to get a treatment plan. Neck dissection was mentioned by the ENT.

RE HPV, I thought if one of us had it, the other inevitably would. Am I mistaken here? I will mention getting his cancer tested for HPV anyway. The ENT did say they didn't want to operate on his tongue so I'm not sure of the possibility of his being tested, which is why I thought I would get tested.

Hi, Marina, As has been said above, each of us is different. In our case, the peg was not a choice, but ordered by John's Doc before his initial surgery and radiation started. He ate after his 1st surgery and through the 7th or 8th rad tx. After that, the peg sustained his nutrition and hydration levels for the most part. Given your other responsibilities with your kids and pregnancy, I would have a long talk with everyone involved about the peg. He doesn't have to use it, but if he gets dehydrated and becomes really ill at 1 or 2 in the morning, it will be tough for you to pack kids up and get him to an emergency room.It also depends on Craig's personality- will he force himself to maintain his weight or will you have to become the "nutrition police" ? You already have your hands full! Hope you have some other family or friends to support you. Let us know what the Onc and the Rad Doc tell you and keep your chin up. Amy in the Ozarks

This has to be a tough situation for your family at such a young age. I can't even imagine what you are going thru at this time. I'll be 72 the 21st and it bothers me very much. I have your family in my prayers and just hope the Lord steps in and helps heal him. You have me thinking that I should get my exgirlfriend to have get checked for the HPV. Have a great day.

Marina,

By age 50 it is estimated that over half the world has been exposed to the HPV virus but being exposed doesn't necessarily mean trouble. While a lot is known about HPV, a lot more seems not to be known. It is not known why some are affected and some are not. Our immune system may play a role in that and there are studies to try to boost the immune system's response once exposed to the virus but conclusions are probably years away.

David, what's a betel seed?

Hi Marina,

Sorry you and your husband are having to deal with this. What a lot with young kids and one on the way. I agree with Amy, a peg tube would be a great option to help with the nutrition. My husband did not have one, it was rough...at one point he required daily IV hydration. And, for various reasons we had a couple unscheduled visits to the ER. I thought it was hard and my kids were a little older.

My husband did loose his voice for several weeks. I think that varies person to person. Some people get hit hard with side effects, others do relatively well.

But, at the time when they were wondering if my husband might need a PEG (post treatment) he was so sick that it would have been traumatic, vs. having one put in when he was feeling well prior to treatment.

I will be thinking of you and your family.

I had a PEG tube put in two weeks into treatment. I weighed in at about 113 lbs before treatment, so I was not given the option of not having a tube, it was not up for debate. It turns out that I did not need to use the tube, but everyone reacts differently to treatment. I certainly did not like the tube, and I think I had a harder time with PEG than I did with treatment. That being said, if I had needed the PEG, I am sure it would have saved my life.
I didn't lose my voice during treatment. I sang everyday during treatment(at my caregiver's request) and I have no idea if that had any bearing on keeping things working in the vocal area.
I did not work during treatment because I moved to be closer to my Cancer Center, but I was certainly up and about everyday and never took naps.
Marina --I am so sorry your family is being put through this and my prayers are with you

Hi Marina- My husband has had a peg since his September 07 surgery. He has still lost about 47 pounds and didn't need to lose any-he always had a slim build. I shudder to think what would have happened without the peg. He is on Erbitux as a treatment now and will still have the peg until he gains some weight as the treatment makes him nauseous at times. He would love to get rid of it but it really has been a life-saver, literally.

I will be praying for you and your family. I have three children myself even though they are teenagers. Keep the faith, Sue

Margaret,

Here's a link. We have these in Florida but I wasn't aware that some people chew them for the effects. My Dr Trotti had them listed on his slide listing the causes of SCC. Live and learn.

http://en.wikipedia.org/wiki/Betel_nut

I was diagnosed March 9 05 with stage 3 tonsil cancer with metz to neck and head lymph nodes. I was 51 at the time .Non smoker moderate drinker. I was not given an option on the peg tube They inserted one before I even started treatment. That and my port on the same day. The peg saved my life. After 2 weeks of radiation I could no longer eat. All my nutrition, fluids and pills went thru my peg.After a week or so it became part of me.I realized this tube was a important part of the process to save my life.I'm coming up on my 3 years since being diagnosed and I'm doing very well.You and your husband must stay strong and meet this battle with a very strong and positive attitude. The mind is the strongest organ you have going for you right now. My wife was a huge reason for my survival. There will be days ahead when baby steps will be your measurement of progress. My thoughts and prayers will be with you and your family every day.