Today was the 3rd day of rad and I start the once a week for 7 weeks of chemo tomorrow and scared to death right now! Already having difficulties eating due to dry mouth and swelling of the throat. Really fearful of what tomorrow will bring. I have been keeping up with the 48+ oz of water and pretty sure I wasn't even close to 2500 calories today. Everything just sits in my mouth and feels like glue or taste like metal. Bread is diffidently out but sweet potatoes worked pretty well. I'm hopeful that the side effects will come on a little slower since I'm on the once week instead of the 3 big bags...that sounds awful! Well off to bed to hopefully get at least a few hours before the big tomorrow. Thanks everyone who has posted so much good information...it has helped to kind of know what I'm getting into. Also still struggling with the mask but they said they will make some adjustments to it since it has gotten tight around my throat from the swelling.

Hi Denise � Hopefully the mask will be a little more comfortable once they make adjustments for you. Do tell your doctors how you are feeling. Sometimes they can switch whatever meds you are on for something that could work a little better. When my son had some swelling in his throat, it turned out to be a reaction to some meds he was on and they gave him two shots of Benadryl which took care of it. Everyone responds differently of course and this may not be the cause in your case, so it�s best to mention anything worrisome to your doctor. It�s good that the sweet potatoes are working pretty well for you � try to stay hopeful that the side effects will go a little slower and easier to manage. Let us know how it goes for you.

Denise focus on high calorie drinks like Boost VHC. A small 8 oz can has a whopping 560 cals. Keep swallowing but forget about foods that take a long time to consume. Less time, less pain, more calories. You can order the VHC through Amazon and give credit to the OCF.

Hello Denise,
I am a newbie and moral support of my husband (his mom has oral cancer). I am wish you the best during you treatment. We are all here for you!

Take care and keep us posted.

Ina

Hi Denise! Im very sorry to see you have just started your treatments and are having trouble early on. Get the Boost VHC immediately, order it today. Nutrition is what will play a huge factor in how easily you get thru this. Unfortunately things get progressively worse as time goes on with treatments. Do NOT skimp on the water, you must flush the chemo out of your kidneys. Every single day you need at least 2500 calories and 48 oz of water even if you struggle doing it, push yourself. I know its not easy but it will get harder and if you have trouble now and dont push yourself you will have a rough time. Im telling you all this not to scare you, I dont want to see you end up hospitalized for malnutrition and dehydration like I was.

Some members take anxiety meds before they go for their rad treatment. Make sure you tell the nurse and doctor everything you have told us. The masks are tight so you cant move, if its that bad a new one can be made. The weekly chemo should not be anywhere near as difficult as the 3 big bags would have been. Glad you are on the weekly doses!

Hang in there and please come back often so we can help you get thru this.

Denise, I'm sorry to read that things have gotten tough so quickly. Great advice from the veterans here on the nutrition and mask issues. For me it was my nose and the solution was a hole cut in the darn thing to accommodate it. But I do recall now that the first one was overall too tight and they had to make me a second. So that's certainly an option for you.

I also brought in my iPod and small speakers when I went on The Ride. Really saved my life in there.

Keep drinking the water, order the VLC and above all - courage! I know you have it in you to get through this. We're all here for you.

Thanks everyone for all of the support and advise. Week one has come and gone and I made it through the first round of chemo. They made some adjustments to the mask which has helped a lot. So far not feeling to bad from the chemo just still having the dry mouth and metal taste...most things taste odd. I'm getting all the water down and have been able to get the calories in so for now, I'm fairing pretty well. I see the GI dr on Monday to find out about the feeding tub, must say I'm not looking forward to that at all but would rather have it done early so it's already in place if I need it. When I saw the chemo dr on Thursday he said the lab test showed that it is NOT HPV positive, so now everyone is scratching their heads as to the origin...go figure. Really glad I found this site, everyone has offered great advise and support and it is really appreciated! Off to bed now. Keep the faith!

Well I just got scheduled for the PEG to be placed this Friday and had 7th rad today. Feeling better than last week but getting pretty hard to eat. Still able to handle most soft things but always need lots of water to get it down. Tried lightly fried eggs on butter soaked toast this morning and that worked pretty well so that may be my breakfast for awhile. I've started using the fluoride trays from the dentist with the fluoride tooth paste he gave me and using that tooth paste to brush with too. It seems to help with the dry mouth and helps to elevate the lingering bad taste. OTC tooth paste was causing my mouth to be even drier so I'm glad that this seems to be working so far. MO still stumped that it's negative for HPV and says that makes it a little hard to fight and increases the chance of another reoccurrence so guess it's a good thing they (we) decided to through everything but the kitchen sink at it this time around.

So I have made it through the first 3 weeks of rads/chemo but it hasn't been easy. Lost taste almost immediately and that continues to be daily struggle. What I could eat yesterday, I can longer eat today. I have a continuous "sweet" taste in the back of my mouth that is making even water taste awful. I was DX with trush on Monday and began taking the med's right away. It helped with the "yuck" that was in my mouth but I think the taste bud damage was already done and now can't get anything but soup, liquid only, and cream of wheat down. Feeding tube went in last Friday and I've had a fever and chills ever since. Dr says the tube is OK and no infections, just my bodies way of adjusting to it. The first 3 days with the tube were horrific as we later found out from the 2nd home health nurse that came out that the first nurse did not give us proper instructions so we were feeding all wrong. Forcing it in instead of just letting it run in on it's own. I had gas so bad I thought my daughter was going to have to tie a rock to my feet to keep me from floating away! Now that we've worked that out, the feedings are going much better and not a moment to soon, because I really can't get much done due to the bad taste, soars in the mouth and jaw pain. Tempted to stop treatments and just go with whatever comes after but my family is dead set against that and in my heart of hearts I know that wouldn't be a good decision. I'm trying to be strong for everyone, me included, but some days it is very hard (as I am sure everyone here knows.) Thanks again for all of the great support and information that is provided on this site, it has made a huge difference.

Dont you dare even consider quitting!!!!! Your family loves you and needs you. I know its hard and it stinks but its necessary. Hang in there!!!

Denise,

I know this is so hard - I was on the verge of giving up in hospital when everything was going horribly wrong, then I remembered how many people were rooting for me, and worrying about me. It was enough to push me through the worst of it and keep going.

You can do it, and we're all behind you!

What comes after stopping Tx is a very painful and cruel death so just remember it's a very small time to have to put up with this Tx and we have all done it and we are all here to help you get through it so take a deep breath and let's get to work killing that cancer and before long you will be posting helping others get thru their Tx.

Denise

After 3 weeks of TX, even if you were suicidal enough to stop TX, you would not feel one bit better, only worse. You have absolutely nothing to gain from quitting and everything to win from finishing. That said, I certainly have had those very same thoughts many times during TX, it's natural.
No sugar coating it, it is going to get even worse for a while.
It is indeed hard , and nobody who has not gone through it has any real idea of how hard it is. I used to think that I was so tough that I would breeze through this, but I never truly knew what pain, frustration, anger, and despair were until I did tough out the TX. You can do this, just like the other OCF members have done it.
As long time readers know, I take a contrarian view to most conventional wisdom so my advice is to start putting a little wine down your feeding tube once you get it. Of course ask your doctors, but all of mine were fine with it (and of course I'd have done it even if they weren't). It perks up the pain pills, dulls the depression, and adds a certain tumor humor to be able to say "cheers" to your family as you syringe a little wine down the tube (don't do beer, it will cause swelling and gas and is messy)
Keep the Faith
Charm

Thank you Charmed for the words of wisdom. There is of course no way I would stop treatment. I'm from Texas and we NEVER quit! I was just having a bad few days. Love the idea about the wine. We'll try that today! Always keeping the faith and so very thankful for the kindness of strangers on this site.

Bad days are the norm it's a one foot in front of the other prospect. Keep plugging away and soon you'll say oh my God one day left. I tell people to try this it may help - get a waterpik - add lukewarm water, a tiny bit of mouthwash - and use the tongue cleaner on the lowest setting - it will freshen and clean all those hard to reach spots and maybe reduce the sweet taste. And help with the thrush. You can also try flattened club soda as it heals like the baking soda mixture but you can swallow it so it helps the throat. Hugs! Keep going.

Whew this is bringing tears to my eyes. I start treatment on Monday
Nov 5. This is all good info to have soi can be prepared but, wow is it scary! I will be doing radiation for 6 wks and Cisplatin 3x. Does that mean I will have the "3 big bags" like everyone is talking about?

Denise L
Yes.
It will be tough, but you can do it! I hope you have been eating and eating. Enjoy your favorites this weekend. Not to be pessimistic, but they may not be your fav's when you're done.
Keep in touch as you begin the journey. We are here. Don't be afraid to yell, curse, cry....whatever, we are here and we know.
Will be watching for updates!
Blessings,
Kathy

Hi Denise for what it's worth chemo nothing compared to rads... I had the big back method. And was okay with it. Not everyone has it so easy unfortunately - hope you do.

Denise-Thank you so much for sharing your experience. Many hugs to you as you go through this! My husband will be starting his radiation in December, after his 4th chemo treatment. Being able to read about other people's experiences, I'll be better able to help him through his treatment. My thoughts and prayers are with you and your family.