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JohnnyO's Message Board Messages

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RE: High Calcium

by JohnnyO - January 29, 2019

Not a lot to go on here, but I'm assuming headn/neck treatment here.  Have they scanned the parathyroid glands, and if not, they should.

RE: fatigue

by JohnnyO - September 03, 2018

Hi Mike -

6 years post-treatment here.  My advice would be to not push yourself too much.  I was feeling great and decided to go back to lifting weights.  After a week, I felt like it set my energy recovery back for a month or more!

Eat, eat, and eat, all the calories you can.  Protein shakes, fats and good carbs (skip the sugar and junk).  Google diets for people trying to gain weight.  Walk or jog to kick up your metabolism.  Give yourself a year to feel normal again, and all gains prior to that will be gravy.  I was 50 when diagnosed and felt great (despite the setback) in 6 months.

Congrats on finishing your treatment! 

Hi there -

I had surgery first, including removal of both tonsils, a part of the base of my tongue (the primary), and a neck dissection to remove a bunch of lymph nodes (not just the infected ones).

That was followed by radiation, which was supposedly a lower dose than I would have received if I had not had the surgeries first, and that is why I decided to go that route (my second opinion facility suggested only radiation, as that was the conventional treatment at the time).

I'm 6 years out, and but for the occasional tightness in the neck (likely a radiation side effect), it's like I was never sick.

I'm also aware that the newest approach is to do what you're being advised: have the surgery and see whether radiation is even needed.  I know a guy who did that, and he's doing well a couple of years out.  Man, if you can avoid the radiation, avoid it!

I've never tried, but I agree that insurance should cover it.  I any other organ/body part were damaged by the radiation, your insurance would cover it.  Teeth are generally not subject to coverage because they are so susceptible to decay with improper maintenance, but this is not a maintenance issue.

If I end up with teeth issues due to radiation, I would push my doctor and the insurance companies for covering it.  It won't be easy, but I think it's possible.

RE: Afraid

by JohnnyO - October 25, 2017

Surgery without a biopsy?  Talk to someone else.  Sounds like the cart before the horse to me.

Are your kids in college?

FWIW, as I was reading I came to the same conclusion as the internist:  anxiety.  And either as a cause or an effect of your anxiety, it sounds like you might be sleeping in an awkward position that is aggravating your neck/ear/jaw/carotid, etc...

It's certainly not a typical cancer presentation, and the anxiety makes more sense to me given your symptoms (some coming and going).

Contrast CTs can be done with pre-meds to offset your analhylactic reaction to iodine, but the docs don't seem to think you need that.

Try the Xanax, adjust your pillow and the side on which you sleep.

My 2 cents.

While I don't doubt your fear, I think you will be better served by a mental health professional than an ENT.  THree weeks ago you were diagnosed with ulceratvie colitis which you thought was cancer.  With repsect to the bumps on your tongue,  the docs told you that you have strep throat and you refuse to believe them, again, thinking that you have cancer.  Your ulcerative colitis is indicative of your irrational thinking, even second guessing the docs and lab tests and the fact that the bumps on your tongue are a classic presentation for strep throat (or a fungus of some sort).

You are not being biopsied; the docs are going to see whether you have a different infection besides the strep.

You need to figure out why your mind automatically goes to thinking that you have cancer at an age where cancer of any sort is very rare.  Did you recently lose someone to cancer?

RE: First week of treatment

by JohnnyO - September 28, 2017

I'm so glad you decided to start using the tube with the Ensure.  I tried to comment for you to do that after you first posted, but the website had some sort of technical issue that wouldn't allow posting.

Nothing is as important as energy for getting through this treatment.  While I didn't have a feeding tube, I forced myself to eat far beyond the point of feeling satiated.  Use the feeding tube, and supplement with eating to maintain the swallowing muscles, even if he can't get much down.

THose who had PEG tubes here know more than I do, but I would say to keep loading him up with more calories than he needs so he can even gain weight.  (I managed to gain a pound during my treatment).  Good luck, and check back with us.  

RE: dental work?

by JohnnyO - September 26, 2017

Hey, 

Before I started treamtment I was told that after treatment I should try to avoid dental treatments such as extractions and caps, hence the prescription for fluoride toothpaste to prevent cavities.  So I'm glad to know you had success with two crowns.

But, yes, under the circumstances, if the swelling is not down in a few days, at least go back to the dentist.  Let us know what happens.

Hey George -

10 years ago is a relatively long time, so I would discourage anyone newly diagnosed to assign too much weight to your experience.  In my experience ( 5 years out), the docs were, of course, primarily interested in getting rid of the cancer, but also were very focused on quality of life afterwards.  So they did a very targeted radiation and, I assume, a "targeted" neck dissection, avoiding things like removal of blood vessels and bone, if possible.  They don't seem to hesitate taking out lymph nodes, though!

I'm sorry that you have to go up against the monster again.  Personally, I'm not sure that I would; I've recently realized that I'm not going to live forever.  Even with the great result that I had from my treatment, there's a lot of mental baggage that comes with it.  

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