Thanks for letting us know how the appointment went James. So happy to hear that everything has gone smoothly. I think most of us experience a true relief when treatment actually starts. Somehow taking ACTION makes most people feel empowered at a time when cancer has set you back on your heels and made you feel out of control.

Every doctor I have met has been happy to answer any and all questions you may have so both you and your wife should feel free to ask ANY questions you may have. We are also here to help with any questions we can answer - so ask away. There is no such thing as a dumb question - ever.

Hugs, and keep us up to date with how things are going with you.

Donna

We are here with you every step.

Donna Thank you once again - there is a lot of strength in this group

So today was an interesting day and a touch closer to reality. Met with surgeon for consult on PEG. I had already made the decision prior to the appointment. For me it is a motivator to keep swallowing and not use the tube. For my wife it is some peace of mind. 2nd appointment was with audiologist to establish baseline for hearing. 3rd appointment was with research team to fill out survey. Biopsy sample is in CA being verified. Insurance has blessed participation in clinical trial for chemotherapy. Should know by end of week which group I am in. Cisplatin for group 1 or Cetuximab for group 2. 3rd appointment was final CT scan to map radiation focus. Also fitted with mask. That was a dose of reality. Final appointment was dental hygienist for last cleaning and dentist for tray molds. Radiation starts on June 3rd.

Consider the nasal tube. I didn't do the PEG and only needed a tube for 2 weeks (post Tx) so why have something for 10 weeks when you most likely can get through this with a 2 week nasal tube.

Is the Erbitux used in conjunction with cisplatin? for this clinical trial? If not I would ask a lot of questions. Apparently it only works on a certain group of people based on genetics. Cisplatin is tried and true. I would not risk a recurrence just to participate in a trial when what they use normally has an excellent track record. I am not an HPV related cancer so I'm not totally up on the details and I know a few people here have used it but the consensus is that if it is to be used it should not be a stand alone chemo. It should be in conjunction with cisplatin. or another chemo. It actually has a better track record with non HPV related cancers. If I am wrong on this I am sure someone will step up and tell me but I think that was the gist of what has been floating around here. anyone else?

David thank you for sharing your thoughts. I really sense drive and determination in you. You are motivational and make me think. Unfortunately/fortunately this decision was more about comforting others.

Cheryl - thank you for your comments. If randomly selected for Erbitux it would only be used with radiation. Tomorrow I should find out which group I was selected to participate in. I will let you know.

James,

If you do go with the PEG (not sure I understand what comforting others has to do with a decision that may affect what and how you swallow the rest of your life though???) then PLEASE only use it when you absolutely can't swallow naturally, even if that means with some pain. Those muscles seem to have a short memory and can quickly forget their function. Many people using a PEG become lifetime dependent on it and are never able to eat solid foods again.

Please understand that this is a treatment that hopefully will save your life and if you do survive both the cancer and the treatment your life will be changed forever so this should ONLY BE ABOUT YOU. NO ONE matters right now other than YOU because if you do survive you will be the only person really having to deal with what's left over post treatment so please don't do anything now just to please others. You are numbers 1, 2, 3, 4, and 5 and everyone else comes after that.

I have a peg, my 2nd one, for 3.5 years, which I used solely during several treatments, months, and did not loose any major swallowing function, and thereafter eat basically everything from bread, bagels, pizza, steak, you name it, I probably ate it, and on a quest to do so lol. David is right about these muscles having a short term memory, and can loose function. Mine apparently have a good memory or were forced to come back by my eating, tasting everything I could. I find fatty food easier to eat, taste, and help swallow, so butter is my friend. Good luck.

Erbitux is the group I was selected to participate in. First treatment will be Tuesday May 28 at 9:30 AM. 1st Rad Monday June 3rd at 8:00 AM

David again I thank you for your candid comments. Understood. Somehow we will connect over the next week. My schedule is insane right now as I transition from work to patient.

Hi, Jim
it must be a relief to have your plan and get started. Eat lots of tasty food over the long weekend, and best wishes on Tuesday morning. My husband found that bring his Kindle along made the waiting for chemo, rads, blood work and so on a lot easier.
If possible, have someone with you for the first couple of Cetuximab infusions - it is possible that you may have an allergic reaction. The medical folks will be watching you carefully, but having 'designated' driver would be nice. If your significant other goes with you, make sure they have something to keep themselves occupied so they don't fret (or at least fret less).
You might want to pick up some Aquaphor if you are out shopping over the weekend - if the rash comes up quickly next week, it will help.
Although you should assume that you will be missing work for this adventure, there is some hope that it won't be a lot. Until the last week of treatment, my husband drove to work and then rads 4 days a week. He skipped all or most of work Fridays and did his chemo/rads, the last week of treatment, and most of the week following treatment. A good deal of how much you can do depends on your own reaction to treatment, how well you take care of yourself, and how flexible your work schedule is. Don't push yourself too hard!
Best wishes,
Maria