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Still kickin!!!

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

Hello everyone! I haven't been on here for a very long time, which is good because that means I've been busy living again! Just a quick refresher: I was diagnosed with Metastatic Squamos Neck Cancer with Occult Primary in my right tonsil which had spread to all of my right lymph nodes and my left tonsil on December 1st, 2010. I had 33 radiation treatments, two chemos, and a selective right neck dissection in May 2011. For any of you that are in the process: you can do it! I'm at almost 18 months out and all is clear. Now. About those residual side effects that I have. I have very little spit. And this results in kind of a sore mouth and throat most of the time. Nothing unlivable. And I have found some things that help. I still haven't gotten my taste back, I can do salty, no spicy or sour, too painful. And sweet is hit and miss. (I told my ENT on Wednesday that my behind thanked him for this, my female hormones.....not so much) Chocolate is totally out, it's like eating a crayon. (Ummm yes, I vaguely remember trying to eat a crayon at some point in my childhood and it's very similar). Life has now gone to a "new normal". My eating habits have changed. (I LOVE untangy fruits and lots of new vegies on the menu) Of course, I stopped smoking. And I exercise every morning. I am much healthier than I was before cancer. And I am happy :) I have an amazingly perfect new (year old tomorrow) grandson who has made every single thing I went through worth it- just to see him smile at me with his little two toothed grin and say "nana"! So. There is indeed life after cancer. And it's an adjustment. But it is good!

Here is the main reason for my post: I'm looking for opinions, similar experiences, etc...from anyone who has gone through this before me. For about the last 8 months, I have numbness and tingling in my right shoulder and arm. Sometimes it aches up into my ear and down into my middle finger. The muscles on that side of my neck and back are tense and swollen, straight to the point, it hurts, kinda like a toothache-ish pain. My docs say there is a mass in my neck which they believe to be scar tissue and believe to be wrapped around a nerve (all my CT scans are clear but you can feel it) and you can visibly see the muscle swelling. I'm on gabapentin, 300mg 4 times a day. This helped immensely for a while but is not working so well anymore. I haven't had an MRI yet, I'm trying to avoid that cost since they are relatively sure what it is. I guess what I'm wondering is: has anyone else had this? What did it turn out to be? What was the treatment plan? It's not horrific pain, just miserable constant pain. Kinda like water drops on your forehead (ugh?). Ultimately, I would like to be off of all meds and be done with this, but at this point, I'm willing to do whatever the doctors say to make it stop. Any ideas?

Also, if anyone is just starting treatment or has just been diagnosed, please feel free to ask me any questions that you have, I'll try my best to answer. Or if you just need someone to vent to, I can help with that too! Hope everyone is doing well and big hugs to all! Looking forward to hearing from you!

Karen

CivilMatt's picture
CivilMatt
Posts: 2921
Joined: May 2012

Hi Karen,

Nice story (other than the side effects) about how you are doing. You sound like you have found a good path to follow. I am working on my new attitude and life out look and really am feeling pretty good about things.

I hope someone jumps on your condition with some good information.

Best,

Matt

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

Hopefully someone will be able to relate. If it is scar tissue around a nerve that sounds painful. Hope you find a quick solution.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I'm 3+-years, and the sensations you describe are common to me. Feels like a wreath around the entire base of my neck where it intersects with the shoulders. Also get the L'Hermites, still. Only way I can describe the sensations is like nerve endings dancing around. Also get major spasms on the left side of my neck.

Great to hear you're still kickin', and doing all right, on the whole. Yes- agree 100% with your assessment about life after C. Kinda awesome.

kcass

shoeloy
Posts: 70
Joined: May 2011

Gabopentin quit working for me as well. My doc then ordered Lyrica which seems to help.
You might try it.

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

Thank you all! Maybe will try Lyrica, the only reason we did gabapentin was because it's less physically addicting than Lyrica, but at this point I'm will to try anything. Hydros work for the muscle pain, but not the shooting/tingling sensation which is what makes ya batty! :) I'm sure we will figure it out and I'll keep ya'll updated!

Hope everyone has a fantastical weekend!
Karen

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

Thank you all! Maybe will try Lyrica, the only reason we did gabapentin was because it's less physically addicting than Lyrica, but at this point I'm will to try anything. Hydros work for the muscle pain, but not the shooting/tingling sensation which is what makes ya batty! :) I'm sure we will figure it out and I'll keep ya'll updated!

Hope everyone has a fantastical weekend!
Karen

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Karen

I had same experience as you and shoeloy with the gebapentin....worked for about 3 months, then suddenly stopped... switched to Lyrica and it seems to be working for last 6 months or so...still have the pain but it is way more manageable....I also started to crochet...(exercise was suggested as a possible pain reliever so I am making potholders for everyone I know)

You might give the Lyrica a try and I hope it gives you some relief.

tommyodavey's picture
tommyodavey
Posts: 353
Joined: Nov 2011

I too have issues with my right arm after my neck dissection. Maybe Lyrica would be a good idea for me too. I'll ask my Dr.

Today I made an appt. to see an Acupuncturist. There has been some light discussion about this helping the nerve pain. I'll let you all know after a few treatments if it's working or not.

This seems to be a common problem for us who have had a neck dissection. One would think there would be more information about easing the nerve pain. That's why this site is so important.

Hope you find relief Karen,

Tom

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