Hi all,

Wish I had known about this website when my sister Connie was diagnosed with SCC two years ago. It's so informative and the support everyone gives is great and I know it makes a difference in dealing with this. My sister is 3 weeks out since completing 35 IMRT's and 7 cisplatin. She had rad surgery in July '06 and SCC went to it's 3rd site, the neck surrounding the carotid artery. Tumor too large and location made surgery not an option. Went thru the treatment, and is just this week regaining the ability to swallow. Has had a peg tube since January, as she lost the ability to swallow, even before treatment began. The suction machine has been a godsend, we went nowhere w/o it. It's nice that she hasn't had the need to use it the last few days. Unfortunately, Connie is still having pain, the tightness of the neck, we figure it is due to the scar tissue, but it is so painful, she is taking morphine for it, especially bad in the evenings. Also a burning in the throat. Does anyone know if others have experienced this or something similar post treatment?

Hey Nancy
Yes, this is a great forum. Wow, you have had your hands full. I'm new here myself.
I am suprised no one has responded yet. There are many who have had this and they will respond to you. I was just "surfing" and saw no one wrote, which is unusal. It probally is because of the holiday.
There is a great search engine here at the bottom of the home page. Check it out. Sorry I could not help more.
Good Luck. Happy Easter, PeteyB

Nancy, from reading the postings of hundreds of others here it sounds to me like for the time period the patient is in the discomfort level that exists is about par for the course. Everyone that gets treated is surprised by the long drawn out recovery period. Usually a month for every week of treatment. As a society that is used to quick fixes, this does not correlate, and people have to get used to the long drawn out process. The good news is it gets better in small increments each day.... but it takes many days and the increments are so small sometimes that it can be quite depressing if you do not stay focused on the light at the end of the tunnel. I am curious about the treatment for the disease near the carotid, which you did not expand upon much. What was done and what was the prognosis? This is a dangerous area for it to go. I hope that they were able to control it at this site and the worst is over.

Nancy, if I read your post correctly, your sister is just 3 weeks out of radiation. If that is true, then she is likely to continue to experience pain for awhile. The peg wil help IF she can't keep up nutritionaly by mouth. In my opinion, athe most helpful thing for her will be to be adamant about adequate pain control so that she can rest, eat and drink. Does she have mouth rinces, and breakthrough pain meds. as well as an ongoing pain med? What she is feeling is pretty par for the course- be assertive with her Docs. Amy in Oz

Petey, Brain and Amy,

Thank you for responding, especially on Easter, it is such a busy time. Your words of encouragement help, and Connie has use of both a fentayl patch and morphine for pain. It keeps the pain under control but she does stay at level 1 or 2 all the time. Brian, you asked about the treatment for the tumor around the carotid artery, it was the 35 IMRT and 7 cisplatin. Surgery was not an option due to the size (2 cm) and location. She has had 4 other surgeries ( 2 on tongue the primary site and two on neck, the last being the rad), the cancer just keeps spreading (she declined radiation after each surgery). She won't have the MRI I guess for a couple of months. Guess we need to learn patience, it's been a 2 year "challenge" so far. She just wants to be well and strong again, I know she will be.

Thank you all so much for replying, it has helped.
Happy Easter to all of you.

Level 1 or 2 is considered acceptable by most pain management doctors and when it starts getting into the 3-5 range then you should start questioning whether the dose is strong enough.

Also another factor to consider is the amount of Morphine she is taking to maintain the pain threshold. If it is excessive oftentimes they will adjust the Fentanyl to a higher dose rate to reduce the morphine use. It's a balancing act. Most pain meds won't completely remove the pain - they merely move the pain threshold to an "acceptable" level.

Burning in the throat could be a side effect of radiation damage or also could be thrush, also caused by pH imbalance in the mouth, as a result of drymouth and/or radiation.