Welcome, Pam!

I'm sorry that you have to be here, but I'm glad you came.

I feel for your husband. I got hit with harsh side effects at the end of my first week of treatment.

I agree with the constant rinsing with Christine's ratio. The magic mouthwash most likely can be swallowed. A side note about the magic mouthwash (a.k.a "triple mix") is a combo of benadryl, mylanta, and lidocaine. A lot of insurance companies have stopped covering the mixture since two of the three ingredients can be found over the counter. Compare pricing at different pharmacies if it's not covered. If it turns out that you can purchase the OTC ingredients for less money, ask his docs if they would just write a script for the lidocaine portion, which most likely will be covered. Then you can get directions on how to combine the "triple mix".

The magic mouthwash is not long-lasting, but it may last long enough for him to quickly, but safely, get some fluid, food, and meds into him. Everyone is different. I required a feeding tube relatively early on since I could not take anything by mouth. That is a whole other topic to be discussed only if needed.

Another medication that I was given (that cannot be swallowed) is called "Alcolol". It smells like pine trees and I wondered how it could possibly feel good swishing in my mouth. I told my doctor that I under no circumstances was I going to use it...I can be a little stubborn, lol! When I finally gave in and used it, I was kicking myself for not using it earlier. It does a nice job of cleaning all of the "gunk" out of your mouth, especially when mucositis sets in.

Another tip from on OCF friend was to use a water pick. It did a nice job of keeping my mouth relatively clean when brushing was just too painful. My favorite trick that I do to this day is to use a soft toddler toothbrush. Yes, the one for 4-year-olds. Winne-the-Pooh never hurt anyone! Not only is the head nice and soft, but it's small and can get the back teeth when it's difficult to open your mouth wide.

I hope some of this helps. Yes, life is likely going to be the most challenging over the next few months, but many of us have gotten through it with the help of those like you! Things will get worse before they get better, but he will come out the other side of the woods.

I wish you all the best. Please come back often for help and support...if only to vent! We are here for you! Please remember to take care of yourself, too, as the stress of being a caregiver and watching your love go through something this difficult can take its toll on you. There are websites where you can set up a "helping hands" team and coordinate respite care, rides to treatment, grocery shopping....anything you need. If you are interested in knowing more, feel free to send me a private message (PM) and I can give you some information.

Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!