My beloved has base of tongue primary, t1n2a, hpv positive. He turned 60 recently, non smoker, social drinker, clean living guy.

He is the love of my life and it hurts to see my big, strong, handsome man barely able to swallow scrambled eggs. He has just completed week 3 of radiation, week 4 of erbitux. Has peg since monday, we waited too long, that was definitely a setback! Would say to others -- do it in advance, when you are compromised, it is tough! The dry mouth is worse than we anticipated, have a humidifier, is there a" best", because what we have is not cutting it.

Godspeed for all of us on this journey, and thank you to everyone for the love and support I have found here. you are an extraordinary group of people. I am a little ashamed of my past ignorance; thank you for teaching me.

Btw -- what is frack? Could someone add to the abbreviations? I keep seeing this used to describe i think a surgical procedure, but do not understand what it means.

Best regards to all,
eskimo

LOL...um Frack isn't a medical procedure, more a lifestyle choice a level of consciousness, attitude, and small but elite cadre of intellectual assassins...a club if you will.

Welcome to OCF, glad to found us sorry you had to! Where the cancer diagnoses is tough I'm so happy its early stage and HPV + as that's a great prognosis. Keep plugging in for support! Strength in numbers!


Eric

Eskimo, welcome to OCF! Im sorry to hear of your watching the person you love struggle thru treatments. Being a caregiver certainly has its own set of challenges!

For abbreviations, check out the following link. Dont worry after a few posts you will pick up alot of the most commonly used ones.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=93188&page=1

Nutrition will play a key role in how easily your husband gets thru this. He needs a minimum of 2500 calories and 48 oz of water every single day. I know it sounds like too much but its a MINIMUM. Right now his body is burning up calories at lightening speed trying to fight the cancer and to help build him back up from the treatments. Make use of the feeding tube, it is a very good tool that will help get him thru this. Many of us used Carnation Very High Calorie to meet our daily minimums. This can be purchased thru the green box with the Amazon link on the main forum pages. Please use that for any Amazon purchases you or your friends and relative make (hint--- pass it on!) Each can is 560 calories and is about $48 a case thru Amazon.

As far as a dry mouth goes, try using biotene products. They make a mouth gel which can help. Also the doc can prescribe Salagen or pilocarpine to help him produce more saliva. To be honest, this point in treatment isnt where what most of us call dry mouth. Where he will notice a huge difference is about a month after rads is over, his mouth will be like the Saraha Desert! Sorry, dont mean to scare you but it will be much drier than what he is going thru now.

Best wishes with everything!

It does get better, or maybe we caregivers just get used to it. When we were at the point you are at I recall just feeling overwhelmed because the ground was shifting so fast under my feet. Now he/we are adjusting to the new way things are -- problems with swallowing, textures, spices, energy level. In time you might view these as good problems to have, considering the alternative. Thinking of you and all the best.

Eskimo

This thread spells out the Frack story
what is an old / young frack
Your experience is very similar to what my wife/caregiver went thru my first radiation and chemo TX since I "celebrated" my 6oth birthday with a radiation treatment and vomiting. Worse birthday ever! I hope the Erbitux works better for him than it did for me (for about half of us, erbitux is a two faced "miracle drug": it either works like a miracle or else it's a miracle if it works)
We had a whole house humidifier before the cancer so I don't have a recommendation for a room one but Christine's post covers that well.
The important thing is to let your beloved know that there is indeed a rewarding life after this hellish TX. With a T1 tumor he should do great. It does get better but I have to warn you that you ain't seen nothing yet because it's going to get worse the next couple weeks. Hang in there. Soon your beloved will be back to his big strong handsome self - just like I did
Keep the Faith
Charm

Here is a list of foods that should be easier to eat. They are less spicy and have a smoother texture so they dont irritate a sore mouth as much as other foods.

List of easy to eat foods

I can't tell you how many times I read Christina's recommendation for calories and water and yet I discovered something today! A couple of weeks ago my husband experienced a full day of extreme weakness, which we couldn't figure out, but we now know what caused it. In his cycle of treatment he gets radX2 daily and chemo(cisplatin) on Wednesdays. His best day of the week is on Thursday's and then Friday until about midday - which we discovered is from the steroids he gets with the chemo. He got up today and was as week as the worst day which again just seemed unexplainable. I have been keeping a chart becuase he is getting tube feedings and I've been trying to keep his nutrition up - daily weight, feeding times, protein supp times, etc, and so I went back and looked at the day before the worst day and sure enough - only 3 feedings that day, and only 3 feedings yesterday! He gets carnation instant breakfast VHC and a supplement of liquid protein. What I learned is that it's not just to keep him going, but it is also to provide his body with enough ammunition to keep on fighting. He is 79 years old and is doing really well - although we have 2 more weeks out of 7 to go. He sometimes needs a walker and wometimes doesn't have enough energy so we use a wheelchair, but many days he is able to walk around the house absolutely unassisted for which I am so thankful.

I'm pretty sure this whole time would have been more difficult if he didn't have the PEG tube because I know he never would have been able to keep up with the calories needed in this battle.

Christine - I thank you for all your advice and knowledge - thank you so much for sharing it with all of us!

Eskimo

Here is another recipe that both old and young enjoy and is very easy to eat and healthy also
Charm's CAT Pie recipie
At this point, it may be too much for your patient but once he's done and eager to eat again, it will come in handy
Charm

Hi, Eskimo
We actually stopped calling food 'food' and started calling it 'nutrition' when the radiation really hit. My husband managed (barely) without the PEG but was on liquid nutrition by about week four. He found it easier to knock back the protein shakes / ensure drinks standing at the sink so if he coughed it would be less of a disaster. I also think it was physically easier for him to swallow while standing. I would also just leave the room as it made it easier on both of us. Even if he is using the PEG, he should do his best to keep swallowing to keep the muscles in order.

It's all going to kind of suck for the next six weeks or so, but if you can help him (nag or encourage, depending on your marital style) he will be much more likely to complete his treatment with a minimuun of drama, and be able to heal more quickly afterwards.

By the way, my husband did very well on the Erbitux - noticable lymph node shrinkage about a week and a half after the loading dose - well before the radiation could be expected to impact them.

I am glad to hear that your sweetie has never smoked - he should do well after treatment!

Take care and best wishes!
Maria

Thank you all for your kind and informative responses. I will try the suggestions on easy food, biotene products and nagging as my marital style (not new ) to beat this fracking cancer!
Ordered a new humidifier, will advise if it works better than the vicks version we have.
"Beloved" is huge BSG fan, me, not so much, but it may become a favorite after that youtube, reminds me they were so subversive! What is not to like?

Thank you all for being there,
Eskimo

Hi,
Where is Fire Island?
It sounds as though your hubby and my hubby were pretty close in their tx. The only difference is mine had MUCH more chemo before the radiation. He had a small break before we started radiation and the Erbitux. Everyone is giving good advice though as far as how it is going to get worse before it gets better. Hang in there though, it does get better. Kevin ate scrambled eggs almost every day until towards the end of tx. the he only drank Ensure and milkshakes for maybe 2 weeks, then back to eggs and eventually oatmeal. He still eats oatmeal in the am as it goes down the best. The rest of the day is better and he pretty much eats what he wants.
The dry mouth is also going to get worse. Kevin carried water everywhere we went and sipped continuously.
Best of luck. Hang tough and keep in touch!!
Kathy

For all of you extolling the benefits of the PEG tube, and there are obviously many, please keep in mind that the user MUST continue to use their swallowing muscles daily or they might end up with lifelong swallowing issues post Tx.

I also do not for the life of me see why more patients are not given the option of or even told about the nasal tube. I refused to have a PEG and paid a hefty price but was talked into a nasal tube in my 2nd week post Tx when I was literally near death because of my stubbornness/igornance. It took less than a minute to "install"; I used it for 2 weeks and I pulled it out myself at home.

Agreed. - its got to be more expensive to place though mobility and normalcy are affected it's much less invasive.