post throat radiation with severe ear pain

Hi I guess I am not alone with severe pain to throat radiating to ear. From radiation necrosis. Any suggestions on treatment options?

I am totally frustrated that having just celebrated one year out of radiation therapy for T1 Glottic Cancer to the right vocal fold, I feel worse now than I did before starting treatment.  The only thing that is better is, the cancer was stopped, the vocal fold cleared up and now I can speak normally.  However, I still have the ever annoying burning throat, the thick mucus that chokes me and the pain in the right ear.  At each one of my followup visits, I have complained about this problem and not one of the Specialists have offered any suggestion of something I can take or use for at least temporay relief.  I realize that the healing process may take longer than a year but, this seems worse than when I was get the radiation treatments.  I don't understand and, haven't gotten an explanation for the ear pain. 

hi l am 53 and l just got my 2 year clear on my head and kneck cancer. l had stage 4 and given a 30& chance to live.l am thankful l am here but, am in severe pain 24 hours aday.l have a pain speacialist whom has a bad bedside manner.l am nervous around him and get frustrated when l have to expain my pain.l work in sever pain everyday.l find this is not a good quality of life.

thanks

kerrielee

Kari l understand how you feel as l am having alot of the same problems, Have you been to a pain speacialist?

hope l can help/



kerrielee

Hello All....

 

I thought I would see if I could revive this topic since it appears the most recent reply was over one year ago.  Todays date is 5-22-12 and I am four month out from base of tongue stage III cancer with one lymph node involved and I was HPV + ...for those who have done some research you will know most of what my diagnoses entailed as to my treatments...

....my treatments were Erbitux and radiation...I did not have the traditional platinum chemo drugs.......My treatmnets ended January 20th 2012...my diagnosis was in October 2011 .....

I was treated at the MSTI Clinic in Boise Idaho and I fee I did receive very good care (Mountain States Tumor Institute) ...but I do think I might should have received traditional chemo drugs in my treatment plan....

...on May 7th 2012 I had my first post PET / CT scan and my oncologist said he was very pleased with the results ....it appeared (as best these scans can detect) that no cancer was present (remember the "stuff" they inject in you for the PET scan is a radioactive sugar type substance,....... anybody disagree or if I have this wrong, please step in here, ......and the sugar gravitates to the cancer and shows up as a "hot spot" or "bright spot" on the scan.  My first scans when diagnosed and staged were compared to the first scan post treatmet (May 7th) and you could certainly see why the oncologist was pleased with the results.  He did note and we did see a slight "uptick" in heat on my vocal cords, but not a "bright spot" ....and he attributed this to post treatment affects (from the Erbitux and radiation).

Now for those that wonder ...if you get a verbal report like this from your oncologist ....be sure and get a written report too and read through it ...but do not be alramed because almost always the written report will say things like "slight swelling and scaring typical of post treatments OR could be residual disease" ....be purdent but don't be alarmed because almost all of your post treatment reports will read that way ...simple reason is the scans are not perfect and can not possibly detect very small "seeds" of cancer ....at the same time...like I said...just be prudent and watch for changes in your voice, how you feel, lumps that grow, etc., etc.

What I do is I see my ENT once a month and I asked for and he would have agreed to it anyway was a scope and finger exam at each visit.  The scope is for him to look down my throat and visually see for any obvious signs of cancer, the finger exam (in my case) is to feel for any lumps or tumor at the base of my tongue.  You most certainly want ot see your ENT monthly and I suggest this type of exam each time.

So right now being four months out I am off all pain meds but I stil have my feeding tube.  The only reason I still take Narco about 2 -3 times a day is I just feel blah, very blah.  I have ear pain, but not severe (but sometimes my ear pain has what I call "spikes in pain" for a few minutes or seconds ..and that does hurt... and I often feel flush, the kind of flush you might feel when you are coming down with the flu....and I do feel like I have something in my throat ..but I can tell my throat is still swollen.  I have eat very small bites and I have to chew my food very well.  I can't eat a lot of foods, and most foods I eat need to be foods that are "wet" ....I can't eat foods that are dry.

I still drink lots of Ensure and this drink called "Muscle Milk" for protein and vitamins. I find it takes soooo long to eat a meal that I am often heating up my food several times....that along with the small bites and endless chewing I just end up being impatient and walking away from my food (I know, big baby ...lol) .....

My first 3 months AFTER treatments were the WORST ....the mucous, the pain...the fatigue ...everything hurt. I laid in bed for a full month ...my poor wife and kids were expecting me to improve...but that's not how it works....radiation is the gift that keeps on giving.  Of all the issues...I think the mucous and choking sensation were the worst.....  I had my feeding tube put in BEFORE treatments began..and I HIGHLY suggest all do the same ..if you never need it ...good for you, but if you find you do need it ...better before than during treatments....remember, food is health and healing ....and if your immune system is weakend and your food intake drops due to swollen throat and / or pain....havin the tube put in then is much harder on you ...consider it an insurance policy you don't have to use if not needed.  Some will disagree because they say you need to swallow as long and as often as you can ...I won't disagree about that....but I'm sticking to my opinion that it is "crazy" not to have the tube put in before treatments begin. :)

Oh...back to how I am feeling now ..I still feel blah, quite blah.  Oncologist and ENT say all looks good (from my scan and scope exam done on May 7th ) so I am assuming my blahness (if you will) is just after affects of tretment.  Here's the thing you will find if you go on any message board (I personally like the American Cancer Society Message Board - Head and Neck Cancer) you will find those that do much better than you, and those that do much worse than you ...because of course we are all different.

So my hope for this post is to help relieve those that are "wondering" when things will get better or if what they are suffering is normal....but the bottom line is now you will always have to be careful to be "prudent" about your care and follow-up ...but try (easy to say) not to let your mind run away with fear everytime you feel a pain or experience something new ..just watch it closely and always share how you are feeling with our ENT or Oncologist. 

I will add this ...a general practitioner is NOT the way to go once you have experienced head and neck cancer ..you need an ENT and you need a monthly visit...  Now of course if you run a fever or get a cold or something like that ...start with your GP ....but make sure your GP has all your records and you yourself may want to keep notes on your general "how I feel and any changes going on" ...it makes for a good read.

I am including my email here _[removed]_ in the event that someone has more questions or may not be able to locate or get back on this forum (which may very well be me) ..there is a box on the screen somewhere that allows you to "subscribe" to this topic and it appears from what they say that if someone posts somehting on here ..you wil get an email alert.

My prayer is that anyone going through what I have gone through will recover quickly ...I am a person who believes in God and prayer and I am happy if this post helps someone ...but if you also believe as I do ...be sure and say your prayers and reach out to others who are in the same boat ...it truly helps you heal and it educates you quite a bit ...

Best,

Tim Cogdill / Idaho

 ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

 

NOTE:  The oralcancerfoundation.org is a GREAT site to visit for some really good info.

I am 4 years out of treatment for base of tongue cancer.
I had chemo once a week (Erbitux) and radiation twice a day for 6 weeks.
I've been doing pretty well, but my nose runs without notice, and just recently my jaw is sore and it is harder to open my mouth wide, like when I yawn it really feels stiff. I too have recently had the same issue with swallowing - I have to cough it up. It feels like it gets stuck.
And also just recently, I seem to have less saliva. I was luckier than most with the saliva issue during treatment - it was diminished but not too badly. It is manageable. But the side effects getting worse now after 4 years is concerning to me. I just saw my ENT and all looks good to him. I think radiation is bittersweet - it saves us but we pay for it...I think its all just left over damage from radiation. God speed to all!!!

I am going through the same problems but have only gone through 2 chemo and 10 radiation. Before I was they found out I had cancer I had ear infections for 3 years with severe pain. I am hoping to be able to work through this but hearing this I don,t know. I was able to get ssd approved with in two weeks with this condition, just to let you know. I am now on ssi even though I work a little. I hope you get better real soon. Pamela

I want to thank you.  In 2004 I had cancer in the Pryroided gland ( salva gland in front of right ear).  After 8 chemo treatments, and

25 radiation treatments, I was told I was cured. The pain was slight at that time. But it has become very bad. Ear, jaw, neck and

the side of my head. I went to an ENT dr, twice and ask what can be done, and he had nothing for me. Just said don't let any-

one flush out your ear, all the skin will fall off the bone. I was so excited to find this site, to hear your stories, I amd not the only one.  

 

I had 42 radiation treatments to my throat 6 mo. ago and had severe ear and neck pain. It went away following a ruptured artery in my throat that almost cost my life LOL. Now I have pain in my upper arms, but it will go away in time, God will see to that. Hang tough everyone!

The only thing I've been given is pain medication. My MD did just recently mention trigger point injections but didn't seem very positive about it. When I complain I usually just get ignored or vague answers.
My job was ALL talking....8hr a day and I can not do it. After just a few hours I get needle like pain in my throat. I can't do that work anymore (my job of last 20 yrs). Make sure your MD writes down ALL your problems because if it interferes with your work you may need to go on disability (like me) I do also have Crohns which has been terrible since my treatment.

Jim, I am a self-employed plumber and I can not physically do the work myself any longer. If worse came to worse, was it hard to qualify for disability? I have read that with head and neck cancer that it wasn't hard to qualify. What was your experience?



Rickey

RicLew wrote:

Jim wrote:

The only thing I've been given is pain medication. My MD did just recently mention trigger point injections but didn't seem very positive about it. When I complain I usually just get ignored or vague answers.
My job was ALL talking....8hr a day and I can not do it. After just a few hours I get needle like pain in my throat. I can't do that work anymore (my job of last 20 yrs). Make sure your MD writes down ALL your problems because if it interferes with your work you may need to go on disability (like me) I do also have Crohns which has been terrible since my treatment.

Jim, I am a self-employed plumber and I can not physically do the work myself any longer. If worse came to worse, was it hard to qualify for disability? I have read that with head and neck cancer that it wasn't hard to qualify. What was your experience?

Rickey

Hi Ricky,
I got mine pretty easy...but I use to work in the disability business so I knew what that looked at. The best thing to do is talk about the pain,fatigue, speech probs, sore throat etc etc (what ever your symptoms are....and don't leave ANYTHING out. Also, don't forget to add in any other medical problems you may have...or side effects from the medications. Get that all straight and then THE MOST IMPORTANT is to be very direct with your doctor and ask/tell him to list the symptoms and problems your having. I always tell my Doc's to "write this in my chart notes.....because if you don't many doc's don't bother. It really helps to have a good doctor to work with. I even write a list of problems and give to doc and tell him it's very importnat that he write these in my medical record. I also always say that if he disagree's to let me know (mine never has (and I've had 3 different docs that I do this with). Good luck!!! If I can hlep let me know.
Jim

Thanks for the reply Jim. Like I mentioned I am a plumber, and I had hoped after treatment and a recovery period i would be well enough to resume work. Treatment was over 6 mo ago, and I am still in a lot of pain in the neck, shoulder and upper arm regions. No way i can do plumbing work. I called the Onocologist office yesterday and spoke to the nurse pract. and told her that if things continued that I might have to file for disability, she was defensive that the treatment did not cause this. I wasn't blaming anything. She said my charts said I was doing fine!. I take 60mg of morphine and 120mg of hydrocodone, and have been for 6 mo's. Is that doing fine? My Dr. is super, but I don't see him again until next mo. Thanks, Rickey

Hey Ricky - Don't take that "should be fine" and treatment didn't cause this" c**p. Pain is different for everyone. Every cell (muscle, ligament, tendon etc) has been changed from receiving radiation, There is scar tissue, nerve damage etc.. I would let your doctor know how you're feeling and also what your nurse pract. said. Hey - you are having pain and it WASN'T there before treatment!!!
My email is jimmcph1@aol. Feel free to email me personally if I can help.
Jim

Hey Ricky, I'm in the middle of moving and I think I deleted your message by mistake. I don't know if it makes any difference but I did get everything out of my name. I'll have more time next week.
Jim