This is It !!!!!!!

soccerfreaks said:

Congratulations!
John, I admire not just your hope and enthusiasm, but also your ability to put a smile on my face .

YOU GO!

That said, I am not sure what "This is it!!!!!!!" means.

I would certainly not want to be the one to dissuade you from your optimism. I find it refreshing in this joint, frankly. But there are considerations, and you should prepare yourself for them.

To begin with, you have just started chemo, the Erbitux. I am not familiar with it firsthand, and hopefully it does not have nasty side effects. If it does, however, they may not show up first go-round.

Chemotherapy is a cumulative ordeal, and so you may experience effects down the road. I'm just saying.

That said, I really believe that if you got through the first round with no serious adverse issues, you are apt to be okay with it!

Radiation is another thing altogether, however. You MUST follow every treatment with a post-rad rubbing on of the ointment. It should be a non-oil based thing; it should be water-based. And you should apply it religiously (or your wife should), after each and every treatment.

Know that the effects of radiation are not likely to expose themselves for at least a couple of weeks, maybe longer if you are fortunate. (I do not recall the duration of your rad treatments.)

The rads are likely to lead to some burning, no matter what you or your medical folks do to alleviate it. If things have not changed so dramatically in the last four years, there will be some redness, at the very least, and, in my case, my upper chest turned turtle-shell hard for awhile despite our efforts to reduce the effects.

You may experience some fatigue. Between chemo and rads, it is LIKELY that you will experience fatigue.

What usually comes with fatigue and all that you have been through and are going through is grouchiness, shortness of temper, that sort of thing. Expect it.

If none of this happens, you have done a fantastic job of beating the stuff. If any of it happens, you have also done a fantastic job of beating the stuff.

In the meantime, you might want to reconsider the home health care nurse. YOU might not like having her there, but what about your wife?

I had bad home health care nurses when I was going through some of my stuff, and we just called and asked that they not be a part of my care in the future. Many, most, of them are kind, gentle people, and all of them, as far as I know, are explicitly trained for the jobs they are sent to you to do.

Some are unbelievably bad, I agree. But you might want to consider another shot with them, with the proviso that this one who did such a bad job not come back.

It's not that your wife will get any kind of a break because of this, although she will, from a mental perspective... I know that she is apt to be standing over the entire procedure anyway.

It will, however, help.

And, the fortunate survivor who has a loving and caring wife, apparently, you should encourage her to leave you from time to time, to go out, to eat lunch with friends and family AWAY FROM YOU, to forget this thing, to make herself a better caregiver by taking good care of herself.

I'm just saying.

Congratulations, John, and thanks for the positive message!

Take care,

Joe

Glenna M said:

Hi John, Just wanted to tell you how happy I am for you that you are finally on a schedule. I know what you mean when you say you are glad to be on a schedule, I felt the same way, to me it meant I was finally on the road to beating this disease.

I have cancer of the larynx and lung cancer. The larynx cancer had caused me to almost completely lose my voice but after only 2 chemo (cisplatin) and 9 rad treatments I have most of my voice back. It doesn't sound quite the same but at least I can finally talk to my husband and family again. I saw my rad and onco doctors on Tuesday and they both said my voice was improving because the tumor is shrinking. Just hang in there John, there is hope!! I also got the results of my brain MRI - nothing!! Needless to say I am on cloud 9.

So far my side effects have been mild, I am tired and suffering from non stop nausea but no vomiting. The doctors do remind me every chance they get "you are going to get a lot worse before you get better" (pain and vomiting) but have been told they have meds to help keep both of these under control. I also have a peg tube but I am still eating and drinking everything by mouth. Just make sure to keep drinking as much as possible and eat every couple of hours, drinking Ensure Plus has also helped keep me from losing weight. The doctor told me to drink at least 3 Ensure a day as I am small and he doesn't want me to lose any weight.

I hope you and your wife can stay upbeat and optimistic throughout your treatments. There may be some rough days ahead but just keep reminding yourself that better days are coming.

Good luck and stay in touch so we know how you are doing.

Glenna

lyolan1 said:

Radiation
Hi John, Hang in there pal. I was just diagnosed with Squamous Cell Carcinoma. they think it is in the early stages. Could be HPV related. I won't know until my neck disection and biopsy, PET scan first, surgery to remove lymphs, radiation and Chemo. Like they say, the tratment is worse than the disease. I have not decided on the PEG tube yet. I am in good shape and think I might be able to make it. Keep me posted and let me know how the PEG procedure went. Alex.