newly diagnosed and scared

Kent Cass said:

answers to your questions
They are: 1) Onco just spelled it out for me with the 1st visit- Port, feeding tube, and morph. Did not describe the experience, but I grasped what she was meaning- I just didn't expect it so soon.
2)Not familiar with "primary occult." U of Iowa diagnosed the sample from the upper tumor in my neck as positive NPC. All other biopsy samples came back as negative- including the first ENT office needle in the tumor that later came back as positive. Primary was not found, and Oto says that is still a concern, but "occult" was never mentioned.
3)No, as the Onco gave me no options. ENT/Oto sent me to her, and he had told me that treatment was a no-brainer, because of the two very obvious tumors and positive result, and because of the success rate with chemo and rad. Did tell me rad, alone, would not cut it- had to have both, together, and that's the way the Onco did it.
4)Side effects: long term- loss of gum tissue, and so-far minor teeth problems. If you haven't already, you will have to get a full dental check-up before treatment. Had a couple days with cranial nerve pain, but that went away. My tongue took a major hit, but has recovered with only a little more sensitivity than before. My left ear was never a problem, but such is common. Nosebleeds were frequent, but stuffing kleenex up the nostrils always stopped it. Mouth sores- cannot be avoided, and you must get everything in order, ahead of time, to deal with, as they do get a bit extreme: my mouth got bad, Mick, but it did amaze me how fast it healed with magic mouthwash and nystatin, though the gum tissue doesn't grow back. And swallowing became very difficult. I got the feeding tube, I still have, before treatment began, and all my nutrition (4.0 formula) came thru it for some two months. Lost most of my already-handicapped voice during treatment, but it did come back as better than it was before. Critical, Mick, for me was the liquid morph and magic mouthwash in getting thru the rough times. I was also doing two 1/2 tabs of Xanax most every day- the first within an hour before the daily rad. Nobody likes the mask, Mick, used with the rad- and Xanax helped me deal with it. Tried the morph twice, before the rad, and neither time went well. You are positive w/NPC= the Xanax should be your's for the asking. Trust me.
5)My first biopsy Op. took 5 samples- tumor, back of mouth/pharynx, windpipe, tonsil, and nasal. Second, short-notice, biopsy was also nasal- ordered by the Rad Dr. at the last moment- trying to spare me the full head and neck. Both biopsies were under general. Oto took a chunk out of the back of my mouth that I could clearly see, post-op., and it shocked me- but the greater shock was how fast that area healed. Blew my mind.

You started quite a thread, Mick, and I agree with most everything stated by the Vets.
I have a long med history with one of the foremost Otolaryngologists in the world, back in the day, Stanton A. Friedberg of St.Luke's in Chicago. My cancer case, in the now, was transferred from one Oto to another, because of scheduling, at the 08 end; and, the first time I met the second Oto- knew he was the one to handle my case. Feel comfortable with his being my Oto- Wake Forrest grad, currently tied to the U of Iowa med network. Do think this is important- you need to feel comfortable/confident with your Oto and Onco and Rad.

Lastly, Mick, if you go thru chemo and rad, together, you will probably come to a time which Hondo and I, and likely many more, know of. I would urge you to be pro-active in the early stages, and getting the team and course ahead put together as you can be confident with. But there will later come a time, Mick, when the rad technicians, nurses, and even the Drs. become secondary players in this. You will know that time when it comes- I know it as the time when one of God's Angels dwelt with me, and cared for me in both the mental and physical state, and all I experienced was okay with me. I got sick and had to be hospitalized in week #6, so even then I was not out of the woods; yet, though a moderate degree of anxiety did exist with the treatment and symptoms, all greater fear was stifled to the extent of being very distant. If and when that time comes for you, Mick, I would advise that you to let it happen- let your Angel chase all the dark clouds away. It will not be easy getting thru this, but nothing worthwhile is easy- and you will emerge from this as one very much worth the while...

Believe.

kcass

soccerfreaks said:

caveat emptor
Marie,

You may not be 'afraid to use spices generously' because of your ethnicity or familiarity or even because you are putting your fate in god's hands, but that does not mean that some of these choices and some of those spices may not be adverse to proper treatment as we know it today.

CURE (Cancer Update, Research and Education) magazine, for example, in its winter issue, devotes some time to the possibility that green tea may be a curative agent. To its credit, the magazine does not dismiss the potential for one or more of the elements in green tea, it also cautions that too much green tea is apt to be disruptive to certain chemotherapy treatments.

Anti-oxidants are also hailed as cancer cures among the charlatans and would-be scientists, but those who ARE scientists and doctors would caution that the very nature of anti-oxidants make them counterproductive when a person is undergoing chemotherapy.

So it is with sugars as well. Sugar, for those not up on their chemistry, includes a number of types, among the ones I remember, fructose, sucrose, glucose, and some of them are ESSENTIAL to survival. (Someone, by the way, earlier in this post, indicated that we should not listen to our oncologists when it comes to research and 'facts', since these folks are apparently not up on the latest and can't be relied upon, and yet, here, many posts later, you and the original poster are going to your oncologists and other medical professionals to refute what you do not apparently like to hear.)

This site, frankly, is probably not large enough for a list of all of the scams that are going on, related directly to cancer and cancer survival. Like another scam I am familiar with, it sucks the spirit from the weak, the despairing, the hopeless, and does so without conscience. All for personal power, self-aggrandizement, and personal profit.

I have only one axe to grind here, but am compelled to grind it whenever I am so compelled. I do not care what people believe in. I do not care, ultimately, what they decide for themselves with respect to treatment options. I do not care, ultimately, if they decide to gorge themselves with vitamin D to their detriment, or if they decide to refuse medical treatment entirely because god told them to do so.

I care enough to try to talk them out of it, but it's not my job. It's not my compulsion.

My compulsion here and now is to keep people from hurting others with their silliness.

Which is to say: as high-minded as your motives may be, please be sure to advise readers that you may be full of it, particularly when you very well may be ... full of it, that is.

Scientists would do that, if they were wont to spew 'facts' before they were validated.

Take care,

Joe

(PS I note that this was only your fifth post in what is now three months since joining the board. Let me say welcome! Let me say don't be a stranger!)

soccerfreaks said:

Actually, Mick, I was
Actually, Mick, I was speaking most directly to the person with the marie handle (see the reference to just five posts in toto) although I will submit that I also was directing my attention to the entirety of the thread.

As for an axe to grind, I am not sure to whom or what you refer. You are correct in that I do not have an 'axe to grind' with you. In fact, it seems that with respect to 'discretion', which I take to mean careful reasoning unbiased as much as possible by cultural and environmental influences, we are in absolute agreement.

For what it's worth, I am not averse to the notion that alternative therapies and medicines can provide solutions. I am well aware that much of what passes for modern pharma, as you call it, began with and continues to be fortified by discoveries in nature. Without mold, after all, there would be no penicillin.

For what it's worth, I am not averse to the notion that prayer can have a positive influence on outcome. That may surprise some folks. But it is true. I have long been on record on this very site as being a proponent of what I refer to as Hope and Humor. And I have also been long on record on this site as acknowledging that for some of us prayer and hope are one and the same.

I may not pray, Mick, but I accept prayers without complaint, if that makes sense.

On the other hand, I refuse to be beat over the head by a Bible, and expect that others who are members of this site should anticipate the same courtesy, even as they have more important fish to fry at the moment, which is, after all, the fundamental issue.

If you do not understand the difference between praying for someone's recovery and suggesting that one put one's survival in the hands of god, then you and I will continue to disagree on that subject, albeit in a pleasant manner, I would hope.

For what it's worth, if I should discover that my responses in these boards are motivated by some personal agenda, I will quit posting.

They don't pay well enough, frankly.

Best wishes for your continuing success with treatment, Mick.

Take care,

Joe