Hello Everyone: New to this site and this horrible disease, but this site has taught me so much already. Am taking all of your wise advice. I am 2 months post-surgery and waiting for radiation to get started. Still need to get the mask made and new CT scans. Just had my remaining lower teeth extracted last week so waiting until I get the go ahead to start the rad treatments. Thankfully, for now no lymph node involvement so no chemo is scheduled. I've been going back to read all the old posts and appreciate the info all being in one place. Before I found this site -- the info on the internet was confusing and very hard to understand.

Thanks Christine B for the tip on making the intro page.

Ingrid K.
Facebook Name: Ingrid Kardynalski, Huntley, IL

Hi Ingrid, and welcome. If you've been getting advice from Christine you've begun with the best. I'll keep the good thoughts flowing your way.

david 2

Welcome to our OCF family Ingrid,
Best wishes for your upcoming rad treatments.
Gabriele

Hello Ingrid. My sister had the same surgery 6/2/10. Had 30 rads and 3 Erbitux(stopped because of rash). Welcome to OCF. You have come to the best place for answers and support.
As for now eat everything and anything you can before rads. You need the weight and it's going to be hard to eat for alittle while.
Glad to hear there wasn't any node involvement. My sister was lucky with that also.

Good job Ingrid!!! Now everyone will be able to give you a proper welcome! Hope you are navigating the website without too much difficulty. There is so much info available here on the forum plus there are also many interesting articles and news stories on the main pages. You are definitely in the right place for comprehensive info on oral cancer. Sorry you have had teeth removed. Its so much better having them taken out now than later. Do the best you can with eating before your treatments start.

Best of luck with everything!

Good afternoon. I am primary caregiver husband Lewis. He is 50 years old,non-smoker,with oral pharynx malignant neck tumor, two small lymph nodes affected. Stage 4A. It is supposed to be contained. He gets radiation 5X per week and is having Cisplatin chemotherapy every three weeks. I don't know if I am posting this information in the right order or in the right place. He is in his third week of treatment and starting round #2 of chemo tomorrow. I had some questions. Is this the right place to start?

you have done what I did when I started not to long ago. go to topic options, pic new topic and ask your questions. Then it will be your own post. hang in there everyone is great at helping you around the site. As I am a beginner too. how did the first round of chemo go? Hang in there spring is coming!! Ceazar

Hi Caregiver, welcome to OCF. Before long you will be navigating this site like a pro!!! In order to get the most responses and attention to your post, ceazar is right. Start a new post of your very own. That way everyone will give it the attention it deserves without taking away from the original poster (sorry Ingrid). Im going to send you a private message (PM) with info to help you with the navigation. Look for the flashing letter next to your My Stuff tab. Click on messages.

Caregiver,

Has his slides been tested for HPV16?

The 2nd round of Cis was the beginning of my bout with long lasting nausea so try and help him stay of top of that.

You must get him to consume at least 2500 to 3000 calories EACH and EVERY DAY. He must also drink at least 48 ozs of water EACH and EVERY DAY. Look into Carnation Instant Breakfast VHC which has 560 cals in a small 8 oz can. This will really help as the swallowing gets more challenging. He must continue to use his swallowing muscles throughout this Tx no matter how painful it may seem at the time.

Did they do a pre Tx hearing test?

Check his last blood test to see if TSH levels were checked.

We will be here 24/7 to answer any and all of your questions. It may get very bad for him over the next 6 weeks or so but then it's onto recovery so remind yourself and him that there will be a light at the end of this tunnel.

Ingrid, welcome tp our home and family. I agree that Chrisitne is one of the best for advice. I ahd all of my uppers and lowers removed, not by choice tho. Now it is a never ending struggle but supposed to be worth it. Good luck with everything and the best to you.

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