Hi,

This website has been so helpful, I wish I had known about it when my sister was first diagnosed. The care and concern people, complete strangers show for each other is heartwarming. Hopefully someone will have some info to share about post treatment pain.

My sister, Connie is 3 weeks out after completing 35 IMRT's and 7 cisplatin for a scc tumor in the neck surrounding the carotid artery. She had rad surgery in July of 06 (4th surgery, tongue the primary, just kept spreading after each surgery, declined recommended radiation after each surgery). The 2 cm neck tumor was considered inoperable because of size and location. Wondering if anyone has experienced tightness in the neck where scar tissue is located and also numbness and swelling sensation of tongue, and at times a burning feeling of tongue post treatment. She has been taking morphine for the pain, and it tends to be very acute at night. Connie is also on a low dosage fentanyl patch for pain. Before beginning treatment she would have ear pain that would reach a 10 level in 5 to 15 minutes, then often go into a seizure (syncope).
She has just regained the ability to swallow this week, sips of water at this point. We are very encouraged by this, as she has had a peg tube since middle of January, 3 weeks before she started treatment.

Just want to know if what she is experiencing is "normal" for the post treatment period. The doctors sometimes aren't real informative, getting better info from the rest of you.

Nancy

Hi Nancy
I'm glad to hear your sister is coming along reasonably well.

I don't know if anything can really be considered "normal" with this disease, but I am nearly 7 months post radiation, 10 months post surgery, and my neck in the radiated area reminds me of a cooked steak, texturally.

The tissue is tight, tough and has lost a lot of the elasticity that it had pre radiation. The Doctors tell me it is a combination of scarring from surgery and contouring from the radiation.

I think it is a commonality that many share post Rx. Also, she's pretty fresh out of treatment; I suspect you will see significant improvements in the way she feels over the next couple of weeks
Wayne

Nancy, she will probably continue to have significant pain for ahile yet. She might even consider increasing the fentanyl dosage to give her more relief. As you know, she must stay hydrated and get enough calories daily to continue to feel better, so pain relief is very important. Best wishes, Amy in the Oz.

Nancy.I had my surgery 3 years ago i still have tightness in my neck my tongue feels swelled all the time can't hardly talk half the time,i have numbness in my face and neck.Ihope this feeling goes away some time,i hope things go well for your sister.
lynn lynn

I am 5 weeks past radiation and am wondering the same thing about my pain. The back of my throat is painful and it is too painful swallowing to eat, so I am still using the peg tube.

Everyone keeps saying it takes a long time, and I suspect for each of us it is longer than we would like!

Hang in there, and I will too!

Betty