Jim
Thanks. I have learned soooo much already from all of you experts. Unfortunately you have all blazed the trail and found out the little tricks.... I only have to follow the breadcrumbs to get to the end. Had the "MASK" made today and start the radiation next week -- midweek sometime. That's when my "smiley" face turns into the devil I think.
thank you for the support.

Ingrid

Hi Ingrid:
So glad you found this Forum - it's the one place you can look for and find answers to questions that you have, compare treatments, and just get some good old advice from the top contributors, mainly Chistine. Sorry you had to join us, but glad you found us. Good luck on your treatments. Bless you.
julieann

Hi All,

Thanks for your informative replies. I will continue to navigate this site.

Davidcpa - yes he is HPV+ as you were. there is so much in the news today about how the HPV virus becomes throat cancer, especially in men non-smokers. The oncologist said only 1% of HPV+ people get throat cancer. Is this accurate and how do you become HPV+ when most people just overcome it over time? Then I suppose he was in the very unlucky 1% ):. He had a PEG inserted prior to the treatment so we are getting in enough tube feedings although he has lost 10 lbs already. Throat is starting to thrush and talking is difficult.

This is tough...

Thanks to everyone again.

Caregiver 88

Treat the Thrush with Diflucan.

Don't know about the 1% stat and they don't know why some clear the virus today and not tomorrow but stress and the immune system topics are thrown into the mix whenever a lay discussion begins.

What about the TSH and the hearing test?

Just because he has a PEG make sure he continues to swallow each and every day to keep those muscles firing. Some PEG users become lifetime PEG dependent.

Ingrid, The only bad times during Rads was my not being able to talk with the doing doing the rads. LOL But we sure had some laughs before and after. I try to turn everything into something positive. When I visit my Oncologist, I get hugged from the doorway to his office and the Dr. and I don't hug but shake hands and have a few chuckles in between the serious business at hand. Shoot, maybe you will turn into a loveable Angel instead of a Devil LOL

Jim: I'm just very grateful that I am not claustrophobic... I can imagine that would be torture for those that are. I will take your advice and try to find humor wherever I can.... hey, it warmed my heart the other day when you said my post about the teeth trays (me with no remaining teeth!) made you chuckle. I was so surprised when they asked me about it since I know it's noted in my chart that it made me wonder maybe there WAS something I had to do about it. I think I will start a journal it will be something to do while stuck in those waiting rooms. Thanks for your words of wisdom !

Ingrid

David,

Why do some PEG users become lifetime PEG users? He still can swallow water and most liquids.

Hearing test was done. Normal hearing for a 50 year old man.
Chemo #2 was done yesterday with the Cisplatin and they knocked him out (by request) with Ativan, Zofran, and Compazine. I will basically wake him up to feed him for a few days.

It sounds like you had such a positive result. Did it take about a year to get back to "normal"? How did you manage to eat without the PEG?

You have been so kind and generous with your helpful comments.

Thanks! Caregiver 88 in Seattle WA

Caregiver88,

Some become life dependent because of the surgeries they must endure, some due to the damage caused by radiation, some due to a combination of both and some we suspect due to non use of the muscles during Tx. Certainly there is no way the patient can prevent surgical or radiation damage but we tell patients to continue swallowing throughout the Tx to perhaps prevent those muscles from loosing the memory of their purpose.

Tell him to be on the lookout for "ringing" coming from his ears. If he hears or feels ANYTHING different concerning his hearing he should immediately inform his chemo doc as Cisplatin can cause permanent hearing loss. Nothing can be done with the chemo already in his body but they may opt to switch him to Carboplatin for the 3rd if he has damage from Cis #2.

My 2nd Cis was the beginning of my nausea downfall and I could not find anything that really worked for me. I am/was a bad impatient patient and I didn't have the benefit of the advise from this site until 3 weeks post Tx so looking back perhaps I didn't give my meds enough time to take affect but if something doesn't work in the time that the docs say it should keep trying because this Tx plus nausea equals a very bad time.

Again without the sage advise of this site I was lucky to have made it through as well as I did. I was a real sick puppy from my 2nd Cis until about 2 weeks post Tx and I did benefit from a nasal tube for those 2 weeks post that they literally had to force me to try but it made all the difference in the world.

My first year of recovery was certainly the most challenging with the lows of getting use to post cancer life and the highs of surviving a stage IV cancer but I really don't think I recovered to my full potential until after 24 months.

One over riding comment is that we all can react differently but this can be the most difficult time in both of your lives, both physically and mentally so just be prepared for anything and remember that anything is pretty much normal with this Tx.

Ingrid, There is one thing I get tempted to do. I get tempted to put some cotton or something behind my lower lip. LOL I look like a worm that crawled back into the ground and oulled the dirt in behind himself. Damn chin and nose are getting to be too chummy lately. It seems the lower lip wants to go down my throat. I don't worry tho because it is too latge for me to swallow and I can't liquify it. {^^} LOL