Hi everyone,

I have been a caregiver for my sister who had surgery for SCC of the tongue in Mar 05 (stage IV), followed by 40 units of IMRT and 5 of chemo. This finished in a week and a half ago. She also had a radical forearm free flap. However, this was a partial success as a few weeks after surgery, the skin came loose and was taken out. The oncologist assured us that the remaining flap was still in place so we are hopeful.

For pain management after her radiation/chemo, she was on about 5 ml liquid Roxicodone (Roxi) every 4 hours (fairly light dosage we're told). She exhibited a very high tolerance level for pain during the surgery rehab and was conservative in using narcotics at the hospital. A few days ago, she ran out of Roxi and the dosage was less than quartered. Since then we've noticed that she suddenly falls into a very deep sleep and has been carring on a conversation by herself (very scary at first! She is not aware of this.) However, the mucousitis wakes her up after a while. Has anyone experienced this and how did you get around it? She has expressed a wish to come off the narcotics herself and have it replaced this with extra strength tylenol (liquid). However, whilst the intention was to wean her off Roxi gradually, we were unable to do so as we could not get the prescription filled locally. The one thing that really surprised me was the inexact science around the medications. It appeared that it was one vicious cycle of trying out drugs, where some gave the symptoms you're trying to avoid in the first place. This can be so tiresome where there is difficulty in swallowing.

Also, has anyone got some suggestions to help with the mucousitis? Did anyone use a suction (like they gave in the hospital) and if so, where did you buy it? How long does all this last?

Lastly, my sister has taken a very passive role since diagonsed with cancer in Jan 05. I believe this was her way of coping. It appears that she does not care too much to find out what will come, rather just wanting to deal with what is in front of her. However, this has not stopped the family from being proactive and we represented her 'eyes and ears' throughout her ordeal, albeit we are from different parts of the world. We love her to bits and she has taught us so much, her faith is incredible and her determination is indescribable. My heart goes out to each of the survivors - you are all winners and incredible people. God Bless.

Hello Emily,

Have the doctor (ENT) write a script for the suction machine. It should be covered by Insurance. When shes done with it you just give it back to them. The thick mucousitas may last a few weeks but it does get better.
If she ends up with a feeding tube ask the doctor to write a script for whatever you use, Jevity, Ensure, Boost ect. That also should be covered by insurance. That includes all supplies needed to do the feeding.
I hope and pray her treatment goes well, Your sister will be on the road to recovery soon.
Many members of this forum will be pulling for her. Please keep us posted and ask any questions you can think of, someone will respond going thru similier treatment.

All my best to you and your sister, Danny Boy