Julie - 4 years! I loved your message! And I do come home looking forward to getting back to this site. After reading so much doom and gloom elsewhere, you all have lifted my spirits tremendously....that, in turn, helps me encourage Tom. I'm hoping I can get him to join this group for I think it will be some of his best medicine.
These last few days have been really rough on him, but I am suggesting we do a few fun things...like look for that new flat screen TV he's been wanting for the family room ! He's got to have blood drawn tomorrow, so we'll be out of the house anyway!
I'm just figuring out all the medical abbreviations and jargon you all are using (whole new education!)....what does 72Gy mean??

Nicki, I had about the same experience your Tom had. Discovered a large lump in my right neck and mentioned it to my doctor at my annual physical two weeks later. He immediately sent me to the ENT who spent weeks determining that it was cancer with unknown primary. Turned out it was in the right tonsil. Had tonsillectomy and then 3 ciplatin treatments along with 35 rad treatments, then radical neck dissection on right side. You should look into this as I believe some recent studies have shown chemo/rad then surgery to be yielding some excellent results. As far as eating goes, my oncologist would not let me start without a peg. I lost 25% of my body weight during treatment with a peg. Without one I don't think I could have made it. You must keep him using his swallowing as much as possible with water and whatever, but I recommend the peg without reservation. Another positive is that you can take prune juice for that nasty consitpation thing. I took 7 oz. per day and it kept me in OK shape throughout. That is, after I discovered it. Before, I was like Gary, curled up in a ball on the bathroom floor wishing I could just expire. Also, tell Tom that a positive attitude will have an effect on the outcome of the treatments. If he can keep a business going, he can beat this disease. Would highly recommend that he follow through on surgery, too. Get rid of that part of the body that started all of this no fun treatment in the first place. Make sure it doesn't start again in the same place. My wife and I shopped for couches and love seats. I think shopping is a perfect chore for rad/chemo treatment patients. It occupies the mind and is not too large of a drain on our energy. I also stayed away from this site while I was in rad/chemo treatment, so if Tom is reluctant, don't push too much. I didn't want to know what was coming and he may feel the same way. I felt I could deal with it as it came, but if I knew what was coming, I might not be able to get to and through the experience. Just like in the Army when I was going through jump school. Once I made my first jump, and I knew what was coming, I really didn't want to do it again. As far as the attitude goes, the decision to not allow this disease to win, no matter what, will go a long way to keeping it positive. Just kick it in the shin at every treatment, that is the mental image, along with it getting smaller and smaller. By the end of treatment, you can almost laugh at it as you mentally envision all of the black and blue marks on its shins. You will both be in my prayers, along with the team medical professionals treating you. This disease can be beaten and you all can make it happen.

I second what Kirk said about getting him to keep swallowing. At MD Anderson they gave my husband some exercises for swallowing that he had to do twice a day. I think these really helped him be able to swallow after he recovered, as there was a period of about a month that he could not swallow anything, not even water. I made him do the exercises though, although sometimes he was not very happy with me for making him.

Hi Nicki,

I believe that the maximum dose a individual can receive in a lifetime in 81 Gy (gray). Although there are clinical trials going on as we speak for double that amount.

Some more information about radiation with a little background to start off with:

Ionizing radiation is a known cause of cancer and other adverse effects. It is one of the most extensively studied human carcinogens and may account for about 3 percent of all cancers (NAS, 1990). Ionizing radiation is able to remove electrons from atoms and to change the molecular structures of cells. It is these cellular changes that may cause cancer to develop. The genetic DNA in the cell nucleus is thought to be the critical target for radiation-induced damage. (this is one of the true paradoxes of cancer treatment - that one of the things that causes cancer is also used to treat it! It does it by altering the DNA of the cancer cells so they cannot replicate)

Some radiation comes from natural sources, such as that from cosmic rays and radioactive substances in the earth's crust. Each of us is exposed to this "background" radiation at a rate of about 1 to 2 mGy per year (m=10-3 or 1/1000th). (The gray [Gy] is a unit of measurement for the amount of radiation energy absorbed by body tissues. It is equal to 100 rad and is now the unit of dose.)

Very high doses of radiation (tens of gray) received all at once may be fatal, but if spread out over a period of time, a high dose of radiation may be less damaging to healthy tissues. A single, 5-Gy dose of whole-body irradiation, for example, would cause about half the people exposed to it to die within 30 days. But patients who receive daily radiation therapy treatments of 2 Gy directed to a small area of the body can be exposed to tens of gray over a period of weeks.

Source http://seer.cancer.gov/publications/raterisk/risks90.html

Hi, Nicki.

First, I truly concur with the positive attitude advice, because I believe that adds an extra dimension to the curative treatment. Secondly, I had the surgery first, which included a trach, so the PEG was a necessity. Even with that, the rad and chemo beat up my mouth so badly that I lost 60 lbs which was much too much. I cannot imagine how I would have managed without it. I was pretty positive and out and about, but absolutely could not have eaten anything by mouth. It was summer, and hydration was even more important, so the tube was a really helpful thing. Some have had a bit of trouble with the PEG, but I had none at all. You tell Tom that this is all very doable, one day at a time. Lots and lots of us have gone through it and are fine today. Mine wasn't tonsil but I had a Stage IV tumor and a couple of nodes and am more than two years out and going strong. I wanted to know up front everything that would happen, and if he is like that, all the info is here. If he doesn't want to know, we can still answer questions as they arise. This is a large bump in the road for sure, but tell him he can definitely get past it. Like your husband, I had never had any medical problems before this, and in some ways I am sure that helped because I was strong and otherwise healthy. Your job has to be the worst because I know the frustration of wanting to make it better and not being able to. Just remember that being there and being the advocate when he doesn't feel up to it are very, very important things which will help him. When things get to be a little too much, just mentally fast forward a few months to when it is all a memory. You and he will get through this!

WOW! Now that is alot of information to absorb, Gary! Tom's GP used to be a NASA scientist before he turned to medicine and the 'gray' term was a term they didn't have in his NASA days! The world keeps on rolling, doesn't it?
Hi, Kirk! Thank you for your reply - very much what I needed to hear. I got the feeling today that I shouldn't be 'pushing' this site on him; he told me he was happy hearing what everyone had to say through me. You know, his attitude going into this was, "Put me in, Coach!" He just wanted to get started and get on with killing this b*****d. He was all smiles and jokes at first chemo infusion and I was the one with the queasy stomach and teary eyes (WE DID NOT BELONG IN A CANCER CENTER is all my mind kept screaming!) He wore his "No Whining" t-shirt and had all the nurses and techs laughing......now I am the one reminding him that his attitude must stay strong. This first week of not being "10-ft tall and bullet-proof" has just shocked his entire system. He'll get back into the fight quickly, I'm sure!
I do believe they are going to do concurrent chemo/radiation after the 2nd course of chemo treatment and before surgery.
Have you been successful in regaining any weight?
One of Tom's employees has stopped in to see him, so I'll sign off.
Again, you are all in my prayers - for your restored health and with my thanks for being here. Thank you, Brian, for your vision and efforts in developing this foundation.
Nicki

Hi Nicki -- as you've probably learned by now, if you ask a question around here, you'll usually get tons of good advice and experiences... I feel well-armed whenever I go into a new phase of treatment after spending time with these wonderful people...

A few of my thoughts:
* Prayer definitely helps. I'm not the least bit bashful about asking anyone and everyone to pray. I send out regular "prayer" updates to scores of folks, and people actually tell me they look forward to my regular reports.

* Get pain meds and anti-constipation meds lined up before you need them. I didn't in either case the first time I went through radiation and paid the price. Think 32-year-old man wimpering on the bathroom floor on New Year's Eve and once again about two weeks later... ugg...

* Ask, ask, ask whenever you have questions. My wife often brings in our laptop when we talk to doctors. Don't ever fear taking too much of your docs and nurses' time. This is their job and YOUR husband's life. Don't be afraid to be pushy and persistent. I get mad at my uncle (who is being treated for pancreatic cancer) because he and his wife are so passive. We're pretty dang pushy. I call my wife the bulldog because she doens't take know for an answer... I'm alive and battling well today because of her...

* Do take time for yourself. Find some folks you can vent with and who can recharge you. It's tough on the caregivers for sure -- but WE LOVE 'EM!!!

* Protect your time. If you and your hubby have to sleep or rest, turn the phone off, etc. Don't worry about offending folks "who want to help" if you have nothing for them to do. At the same point, ask away when you do need help. YOu'll be amazed at how folks step up...

* By all means, picture you and your hubby BEATING THIS THING!!! Believe it will happen... When folks were telling me over and over how sick I was going to be from the Cisplatin, I tried to prove them wrong and not be so quick to accept that. So far, I've had two treatments (My second was today), and no throwing up... Of course, I'm not getting cocky about that because I know it can happen, but don't let all the talk of side effects, etc. doom you into thinking that everything bad is going to happen... hope that makes sense...

* On that same note, the radiation is pretty tough... I would advise investigating the PEG if you haven't already... I didn't use one, but I weighed 200 pounds at 5-9... I could afford to lose the weight!!

* Tell your hubby to work hard on nuitrition and staying hydrated... Some of my worst days after radiation were because I didn't have enough fluids in me. A few Gatorades changed me for the better in a hurry...

I too am surprised that they are not doing radiation and chemo together... Maybe this is something new, but most folks do them in concert, with the chemo helping sensitive the tumors to the radiation...

Do well... We're all with the both of you!!!

Eric

Hi Nicki,
actually it's new for me too. When I worked for Siemens dosing was done in "rads". Probably freaked too many people ("duck & cover" - Atomic Cafe, etc.) out so they changed it to "grays" or like the old term "(mega)cycle" changed it to "(mega)Hertz" for a guy named Hertz.

Wait a minute - are you saying that Tom hasn't even started radiation yet? He is going to be in for a major shock. I spent most of my time crawling on my belly like a reptile (and after the radiation had a strong resemblance to one).

A tip to the wise - lower your expectations. A positive attitude is important to be sure but a realistic approach and some good planning is vital also.

I used to wear a t-shirt "That which doesn't kill you only makes you stronger" - and it damn near did...

Hi, Nicki, You asked if I had gained any weight back. Unfortunately, I stopped my weight loss at about 150 pounds, thanks to the peg, and I am still at 150 to 155. That's not too bad for me, as I was heavy at 210 before treatment started. Of course, that was over the holidays and I intentionally packed it on as I knew weight was going to be a problem. Thank God for the peg, though, as I would have been in big trouble without it. Also, I wouldn't worry too much about chemo. I had no bad reaction to it as they give you some good anti-nausea meds prior to starting the chemo and then they knocked me out, so I slept through the whole thing and had no problems. We all react differently, of course, so there is no guarentee, but my general feeling from this site is that most people get through chemo OK, with not too much difficulty.
I know Tom's feelings about 10' tall, we all think we're bullet proof. The reality is something we have to remember is full of opportunity for humility and tests of strength and courage. Tom will have ups and downs throughout this treatment, just like regular life. Laughter is the best way to deal with it. And remember, the poor folks who help treat us during this time see all of the wasting on 100's of patients a year. They hate this disease as much if not more than we do. So go into this thing with the image that, when the fight is over and you have won, that the experience wasn't that bad. And, when looking back at it, it was certainly worth the pain of the treatment to end up surviving the disease. If I had not been treated, I would already be dead now. So look forward to being on the other side of treatment. You can make it. With lots of prayers,

Just one more point of view about radiation - I had 37 treatments to both sides, really all around, and it wasn't horrible. Yes, I burned, but there were meds to handle that. I got a little tired, but still was out and about. Anyway, it is not necessarily a terrible experience. The first six weeks were pretty much a piece of cake, and it was only the last week that I was draggin' my wagon a bit. Sure, be prepared for some discomfort, but this is not a terrible torture. And however one reacts, it is a small price to pay for getting rid of the cancer. You and Tom can get though this!