Hello, friends,

Is it typical to still have intermittent/occasional ear pain on the surgical/irradiated side? I am 8-9 months post-rads/chemo/tonsillectomies. This was for my second primary cancer tumour. The first surgery was a partial glossectomy/SND, clear margins & nodes, no adjuvant therapy. Both were HPV-negative.

I am being followed monthly at this point. I see my MO one month and my SO the next month. I am scoped every month and all has "looked great", just some residual edema.

I have my second post-treatment MRI w/ contrast next week, followed by an appointment with my SO. I know I'm getting "scanxiety" and this ear pain has happened before, but it seems that it might be more frequent. I'm also having some TMJ issues on that side.

I guess I'd just like to know others' experiences.

Thanks for listening.

xo,
Kerri

Hi Kerri,

Yes, at least for me it was. I'm 8 weeks post Tx and had some minor ear pain on the heavily irradiated side but more so muffled hearing which scared the bejeebers out of me (hearing loss is a side effect of Cisplatin). Turns out it was a buildup of ear wax. An ear wax removal kit solved the issue.

"T"

Thank you, T!

I'm looking at your signature and it seems like your treatment was spread out over time.

You said you are 8 weeks post treatment? In your signature, it says you had rads/chemo in 2012...is that a typo or did you have additional treatment? Was the emergency surgery just after your neck dissection? Forgive me, I'm just a little confused as to the order of treatments. I'm guessing that they started with surgery in late 2012 and went into this past Spring of 2013?

Nonetheless, thank you for sharing your experience. I'm wondering how long this will last. I know I will ask my doc next week, but it's just nerve-racking as you know. Every little thing makes you worry...especially with having had cancer twice and a scan coming up next week!

Take care and I'll keep you posted,
Kerri

They say if you had pain before treatment, it's likely you'll have pain after treatment, more than someone who did not. Glad they are monitoring you closely to rule out any disease. I had neck/ear pain from an enlarged cancerous lymph node high in level ll, near the ear, which diminished during radiation, but continued for a while after, probably from the necrotic tissue still hitting a nerve, and radiation still works just as long as your treatment lasted, so it was probably up til then, 7 weeks. They had to add the fetynal patch to the oxycodene, and seemed worse when laying down, especially during radiation.

Hi Kerri,

Thanks for catching that! I corrected it. It still was a few months from Dx to Tx as I ended up seeking a 2nd opinion at Johns Hopkins and deciding to seek treatment there (no brainer!) as opposed to locally.

But yes, I started locally (Winchester Medical VA). PET was done Dec. 2012 and the cancer was local in my neck only. I had my 1st tonsillectomy/biopsy done Dec 2012. Was very uneasy with the doctors and lack of organization at Winchester and went to JH. They were 180* different in their assessment and did the selective neck dissection first to remove what was a very aggressive cancer. They also took my lingual tonsils and biopsies to try and find the primary. We never did find the primary. I was treated on the assumption it was oropharyngeal cancer and hit pretty hard all around to cover the bases.

I truly understand what you're saying about recurrence. That's my main concern having had the PET a full three months prior to treatment. I'll be getting my 1st post Tx scan in Sept/Oct.

Best wishes, positive thoughts and prayers on your upcoming scan! Here's to meeting NED again!

"T"

Hi Kerri,

I am a few months behind you - 3 months out of treatment - and like you am lucky to see the wonderful staff at MEEI (though I see Dr. Emerick). I too have intermittent pain in/around my left ear which is the side that had the tonsil cancer. I know that the last 10 sessions of radiation included a 'boost' on the left side, so there has to be more sensitivity and damage to all the tissue and nerves there.

I will keep positive thoughts and prayers for your upcoming scan. Keep us posted.

Best,

Thank you, T .

Thank you, Nancy . It makes me feel mentally better, at least, lol! My ear has been killing me today. I've had to take 2 doses of oxycodone, plus my regular regimen of low-dose methadone. I've been sleeping most of the day. The fatigue is compounded by recently having my thyroid poop out. I've been on meds for 5 weeks. I'll get my levels checked next week and my synthroid will be adjusted. I'm looking forward to the meds helping with the fatigue. Also, I returned to work 3 weeks ago and I work M-Th evenings, 4-9 pm, then Saturdays 8-1. It's good for my mental health, but I wasn't nearly ready to return. We need the money badly, so I'm just sucking it up. It's really not bad when I'm there, but the next day I'm extra tired and hurting. I feel badly for my kids...sigh. Hey, I'm alive and relatively well and this won't last forever!

Thanks for listening to me blab on and on. I look forward to the day when someone asks me how I'm feeling, I can honestly say, "good"! For now, it's some extra makeup and a smile and other days I can't quite hide it . Just keep swimming, as Dory would say!

Love to my OCF Family!

Kerri

I have some "scanxiety" ramping up this week. This Friday, I have my second post-treatment MRI w/ contrast. It will be a year in early August since the second round with the beast. My first scan this past January looked great. I'm hoping for the same this time around. The scan is bad enough, but waiting for the results is worse. I hate this. Sometimes, I really can't believe this is part of the scrip of my life.

I'll keep you all posted.

Love,
Kerri

Hi Kerri
I'm scheduled for the Friday scan as well, my first pet post rads so know what your feeling. I also had ear pain which stopped in the last month,still get it a bit when throat aggravated from eating. Good luck on fri praying for double Ned'

Thinking of the two of you.
We do not have any scheduled scans now - with our teams blessing.
The " scanxiety" is indeed too much.
Tammy

Thanks for relating, Doolittle. I wish for NED for both of us. The waiting is so hard. I have plenty of sedatives to take and they let my husband come in the room with me. He doesn't have any metal in his body, so he signs a waiver and sits at the end of the table and puts his hand on my leg. As long as I know he's there, I can get through it with him and meds. So, I'm grateful for that.

Tammy, you and Kris have been through so much. It seems like you both make a good team and make the best of what you've got. Thank you for always being supportive of me, too. It takes a special person to be a caregiver. I don't know if I would be good at it. I hope I never have to find out!

Love to my OCF ladies!
Kerri

Fingers crossed Kerri!

Thank you so much, Cheryl! I hope you were able to recall fond memories of your Dad this past Father's Day. The first anniversaries of everything can be so difficult, as we all know. Hug and kisses to you!

Kerri