Hello,
We have been reading and learning so much from all of the posts here. Thank you. Now it's time to post our information... I may need help in the coming days!
My husband (age 40 healthy non smoker/tobacco user, and HPVneg) is currently in treatment for:
Diagnosed 8/11 SCC Rt side oral tongue, T1N1, one confirmed node
His tumor was poorly differentiated with perineural invasion
Partial glossectomy and neck dissection (sentinel nodes)

We are in treatment right now with IMRT radiation, 30x, and 7 infusions of Cisplatin.

We are at rad #7 and Chemo #1. He is feeling OK. We had to go back to urgent care already for intense nausea this week. They gave him IV Zofran 2x, Emmend and the steroid. He is/has been taking oral Zofran, Compazine, and Marinol. He lost 6 lbs already this week. He is feeling better today and able to eat. Today however, he hit the wall with dry mouth.... all of sudden, it was odd. I have the humidifier pumping! Is there something that he can do/use this early for dry mouth, other than water? Is the baking soda rinse only for sores?

Overall, we have relocated our family for the next two months to get good treatment. We have two young children (home schooled) that are struggling with it all. It's hard to see Daddy so sick, and have Mommy busy taking care of him.

I am the caregiver to everyone! So, I love reading supportive materials here.

Hope to "meet" many of you here. What a great resource and forum!

Thanks,
Beth
Caregiver to Tracey

Hi there sorry you have o much on your plate. I know someone who was very sick from rads and chemo - I'm sorry your hubby is suffering!! If you buy club soda and let it go fla your hubby can actually drink it. That may help. Try ensure or those type of products to supplement his food. Even if he just takes a sip or two at a time. Adding protein powder will also help with calories and protein. Also I found with mouth sores manuka honey really helped! (do a search of the group for threads on it if you are interested. ) but ask you dr. If you want to try it. good luck!

Welcome to OCF! Very glad you found us.

First let me start off by saying that Marinol is a waste of a drug...synthetic THC is no substitute for the real thing. Many of us who've used it on these forums haven't had good experiences with it. If you are going to use THC, and I recommend Medical MJ, vaporize some cheba instead of using Marinol. It will help with the nausea and help his appetite.

As far as the nutrition goes, I agree with Cheryl, protien powder mixed with Ensure Plus is a good start as Ensure is light on protien, even with 13grams. With nausea issues however sucking down heavy shakes can be an issue so adding a long chain triglyceride like Olive Oil to it as well can pack in the calories. OO is 120 calories and 14g of fat per "tablespoon" which will help battle the weight loss. I'd recommend mixing protien powder & olive oil with however much Ensure he can keep down as nutrition is paramount. Blending Peanut Butter with it works too.

Best of luck, keep your chin up!

Eric

Beth, welcome to OCF! You have come to the right place for support and info to get thru this rough time. Treatments are not easy for anyone, the patient, caregiver, or the family. Its especially difficult when you have young children and are far from home. Many members seek out counselors for the children so they can handle what is happening to their parents. One of our members has written a children's book called "Talk for Hope". It helps children deal with a parents illness. Let me know if you are interested.

With nausea, do your best to keep the medications going even if your husband shows no signs of nausea. Once you get behind its nearly impossible to catch up and get ahead of the nausea. Nutrition and hydration are difficult enough but when you have to put back everything that came out its a darn hard thing to do. The warm water and baking soda mixture will help with a ore mouth so its a good plan to rinse several times per day. Also do stretching exercises daily to prevent trismus from setting in.

Im sure you are a bit overwhelmed with everything you have on your plate right now. Its not easy seeing your husband go thru this plus be his caregiver and take care of the children too. Make certain that every single day you take a few minutes just for you to clear your head. Go for a walk alone or take a drive. Take care of yourself so you can care for everyone else. Im glad you have found OCF so we can help you.

Best wishes with everything!

I agree with Eric, ditch the Marinol. Didn't do a thing except lighten my pocketbook.

I am surprised that he has nausea and especially dry mouth issues this soon. Make sure his docs focus on this ASAP.

And Beth..when you get a chance, put the information that you first listed in your post in your signature so you don't have to repeat it and we can all see it each time and give you the best answers for your situation.

To add the signature..go to the top of the page.."My Stuff"..."Profile" and scroll down to fill in the Signature portion.

Hope this helps, Deb

Hi, Beth
welcome to OCF. Is Tracey getting enough liquids? Some of the dry mouth might be dehydration. Also - as the others have suggested, discuss with his docs as this it early of this piece of misery.
When you do talk to the docs, make sure you have a note pad with all the questions. Make sure you write down the answers as they are given - even if you have to slow down the doc to do so. Remember that you a very important part of the treatment team, and you need to know what your 'marching orders' are. It is a challenge getting through this, but you can do it.
I see that you are 'caregiver to everyone'. Is there anyone around that can give you a hand from time to time? If any of your friends or family volunteer - take them up on it! The cancer of a loved one is hard burden to bear, but if you can put it down for even a little bit (e.g., an afternoon out, or a movie in house without having to hop up for Mommy calls every few minutes) you will be better able to care for your husband, your children and yourself. Really!

Try some oral gel by Biotene for the dry mouth plus most of us kept a water bottle right by our sides 24/7. My wife even made me a holder with an old Marathon patch on it so it didn't look like too feminine. I literally took sips every couple minutes at first
Make it unanimous from the guys: Marinol is simply not effective. It's an expensive pill that has only ONE out of FOUR HUNDRED compounds in MJ that together reduce nausea. No surprise it doesn't work in real life except as a placebo. So called studies on Marinol can no longer legally compare it to real MJ due to DEA restrictions but when they did, the patients all prefered the effective natural MJ. So all you can have is anecdotal opinions and no scientific proof.
let's just say "a friend" used a vaporizer and MJ to keep nausea very successfully under control when no pills worked.
A comprehensive discussion is at NORML
Marinol vs. Natural Cannabis
.
Keep the Faith
Charm

LL bean has a nice thermos made by stanley. i put ice in it and it lasts a long time. great at nite by the bed stand ice lasts all nite. i don't go anywhere without it.

Hi Beth, and welcome. 3 1/2 yrs after end of tx I still have dry mouth issues. For a while I was brushing with Biotene toothepaste then using Biotene mouthwash, worked for a while at night but had to get up every couple hours to drinke water and use the Biotene gel. Then my dentist gave me a sample of
colgate Prevident 5000 (only available through your dentist) and together with Biotene mouth wash, that lets me sleep through the night. Hope this helps with that issue.

A thermos? good idea David. I'm surprised that the colgate prevident helped dry mouth since it's a 1% flouride toothpaste TX. I used to have to argue with my pharmacist who kept giving it to me instead of the flouride gel to put into my flouride trays.I finally just switched pharmacies.
But hey, maybe it's the new Manuka honey for dry mouth.

Actually, ithe Prevident I get says "dry mouth", so maybe there is another form that is just the flouide.

So, we are in week 2, Rad #10 and Chemo #2 on Monday. We have already had to go in twice for fluids and more meds. At home we take Zofran & Compazine. At infusion he gets Emend, Aloxi, and decadron... the next day he is miserable with nausea. He's gagging when trying to drink and eat, even when he sits up, but trying to push through. His mouth is starting to get really awful. Today in urgent care, I looked at him and his front teeth were bloody... from the sores on his lower lip.

Today he is spitting more from the taste and thick mucous. It gags him. So, I am trying my best at pushing fluids and food. I keep thinking that he shouldn't have to deal with this nausea, there are drugs, and we are taking a lot. Is it possible that this will be the best he'll feel with nausea? Should I simply be grateful that he isn't vomiting? I know he can't keep up hydration as is for sure. I am doing all the Ensure/Boost drinks, he is on all fluids now.

Also, we have a vaporizer and MM. I can't seem to get him to buy-in well. I hear you all, ditch the Marinol. Tracey has had only a few experiences with marijuana in college, and it made him anxious and fearful, so now he is scared that it will do the same thing. I finally got him to try it last night, and he said that he felt a little anxious. He didn't take enough to see results in nausea. Can anyone give me an idea on how much it takes to see relief. (I know personally that it worked on others quite well.....)

Mouthwash... I made him 1t salt and 1t baking soda with 4c water. Should it be JUST baking soda or is the salt appropriate? I have found references to both? He's nervous about putting "salt in the wound".

Also, I see in signatures the reference to 2x cisplatin, or cisplatin 3x, does this mean simply 2 doses, or two seperate rounds?

Thanks so much for your help..... I love this group.

Hi here - I can't help with the MM but I used baking soda only. Did they give him magic mouthwash? It might be easier on him if you switch to a few meals involving ensure etc... Good luck!

Your mouth rinse with the salt, baking soda and warm water is correct. It should have the salt in it. If it burns, then decrease the salt. If necessary, completely omit the salt. Salt water works best for healing so try to keep the salt in it.

The 2x cisplatin means the person got 2 doses. Many people who were scheduled for 3 large doses only ended up getting 2, myself included. i was too sick for the 3rd round of chemo.

Pay very close attention to the hydration. If he vomits then those fluids need to go back in. Dehydration can sneak up on you so quickly. When someone gets dehydrated, they feel terrible! I felt so bad that I really thought I was dying. The patient must get a minimum of 48oz liquids daily. Push for even more, the better the nutrition and hydration, the better the patient will feel. Dont let him go short one day and think he will make it up the next. It doesnt work that way, every single day a minimum of 48 oz must go in. Sorry if I am going on and on about this. Ive been in this situation and its horrible! Dont get behind on the nausea meds or that will be next to impossible to control, making the hydration situation even more difficult.

Sorry but I do not know about the other anxiety causing issue. Its not legal where I live. There are a few on here who are experienced with it and can help you with that.

Please keep asking questions as they arise. We will help you thru this!