Ask her doc about "magic Mouthwash". They all seem to call it the same but vary somewhat in the ingredients they want included.

Get her some Carnation Instant breakfast VHC (stands for Very High Calories). Must get it from a pharmacy like Walgreens, CVS or on line but no prescrip is needed. The benefit is it has a whopping 560 Cals in same 8 oz can so she has to drink less to get the needed daily cals.

You may want to inquire about the nasal tube. No surgery and the food/water will bypass the throat so the pain will not be an issue.

Also get her some effective pain meds. Ask about the Fentanyl patch.

Above all keep her goal of finishing this Tx ever present.

When Alex was first diagnosed, I jumped on the phone to the only other person I knew who had suffered through oral cancer and chemoradiation (didn't know about this website at the time). He was in a different country and had different names for things but alot of what he told me was relevant.

The lesson that stands out most strongly was the assurance that we would have days or even weeks when Alex would either threaten to or actually refuse treatment. His advice was to gently probe for the reasons which may not be obvious to Alex himself. So questioning would be non confrontational or accusatory, a little bit airy fairy and VERY gentle (this is definitely one time when nobody expects a Spanish Inquisition). Another respected person to have a chat other than the caregiver may also be a good idea as the new perspective may uncover things we haven't considered. For my friend and for Alex, it turned out to be pain (bloody men). As soon as this was communicated to the doctors (after overriding Alex's stoic but unhelpful "not too bad" response)the pain meds were changed and or increased and treatment continued until the next barrier was encountered. Depression was the next thing caused by one of the pain meds (morphine) so that was changed.

Don't know if this is where your sister is at but at least it gives you something else to try.
Karen

I at times feel my Drs were overly agressive. Especially with the Rad seed Implants. Pain meds help, but there is ever present pain , even when I was taking 4 pain meds plus Fentanyl Patches. I tossed everything but the Methadon and Percocet. My pain team doesn't like my doing this, but at least I control this body and not science. Oh for a piece of bacon or even a burnt steak. LOL

Hello all. Just an update. My sister was admitted into the hospital today for dehydration and a possible infection in her throat. UGH!!! She will most likely be getting the PEG and will have a week off from radiation.

David- You did this without the PEG right? You are one strong person!! Her mouth looked like someone put acid in there. I don't know how you could eat like that..

Well hope to talk soon..

Aw Susan I hope your sister gets well soon,
I'm sure her doctors will take care of this bump on the road.
Best wishes,

Susan,

I made it thru Rad without feeding assistance if that's what you want to call it loosing 30% of my total body weight! lol but I reluctantly agreed to let them put in a nasal feeding tube during my first week post Tx and it really helped me. Probably saved my butt. I kept it 2 weeks and actually pulled it out myself. The advantage of the nasal tube is obviously no surgery as they just feed it thru your nose into your stomach. I didn't mind it at all.

Susan

I hope your sister is back on track quickly, so she is able to finish treatments and then onto the recovery stage.

There are many people who didn't have a PEG, and many who did. Your sister has also had surgery on the area that is getting radiotherapy. Surgery in itself is extremely difficult. Some patients haven't had surgery before radiotherapy and/or chemotherapy treatments.

With this disease and its treatments, everyone is different. It depends on what areas the radiotherapy is being aimed and also how much each individual is getting. Every treatment is different. If your sister needs assistance in getting her nutrition and keeping hydrated, the PEG is a tool to assist with making these brutal treatments on her mouth just a tiny bit easier.

Take care

Karen

Susan, hope your sister feels better soon. I also ended up being hospitalized for dehydration and malnutrition when I went thru chemo/rad. She must get 48+ oz water and 2500+ calories daily or she will feel awful. Once she gets the peg tube it will be easier for her.

Not one person here who got a peg tube wanted one. Its something that everyone struggles to avoid, but it is necessary for most of us. Very few have goten thru this without some type of feeding assistance. The tube will make it so much easier to count the calories and water comsumption. Try to encourage her to still do as much by mouth as possible. Even drinking water a few sips at a time will keep the swallowing muscles active. Its more difficult to relearn how to swallow later.

Best of luck to yoru sister.

Thanks so much everyone. She had the Peg put in today. She is still going to be realeased on Saturday. I just hope I can figure this new caregiver duty out. I think it was you Christine who told someone to get the pump so I asked the dr's for that. When she had the NG tube after surgery she became very nausea when they did the syringe feedings. So I remembered that helpful hint. I also ordered the carnation breakfast vhc for her previously. Can I use that in the peg? She still has 13 treatments left so I really hope this helps her out. I don't care at this point if she sleeps most of the time. Lol! I feel like asking the dr's can we just knock her out for the rest of the time because she is in a lo of pain.

Another update (or downdate) from Texas:
16 treatments in out of 30....Had to have surgery last Tuesday to have a tube put in my R ear to let it drain (radiation has eustation tube messed up) and have now noticed my taste is getting muted somewhat...Doc assured me tongue was NOT in IMRT fields, but techs confirmed my fears today, tongue is getting hit at least 3 different times. (Another reason to give nursing staff and radiation staff weekly candy treats - when you have a question..they are prone to help you out) I am loosing my sense of taste, and lost 3 pounds this past week. I'm sure Doc is going to get on me tommorrow about weight loss, but I'm only
-4.1 lbs since starting 3 weeks ago. I'll be honest, I guess it's Ensure from here on, since it has some taste, and nutrition value. Any suggestions on how to keep spirits up when I won't be able to taste my 12yo's upcoming birthday cake.....I know I'm there, and that is all that counts, but this was one of two big things I didn't want to happen. PEG being the other. Any thoughts appreciated! Still fighting the fight! Like the good soldier I am, I'll trudge on, and get to the objective...I have just lost my supply of MRE's and are on K rations from here on out. (You service people know THAT difference)
only 14 treatments left!