Hi Everyone:

I recently posted in the section dealing with newely-diagnosed. I am now approaching treatment at Johns Hopkins for radiation for 7 weeks plus weekly chemo[carboplatin & taxol]. I will be see the dental oncologist next week and my date for start of treatment is Aug.9th.

My weight was only 150 pounds [perfect weight for my size - 5'8" but not for anticipated wight loss which I know will result from the treatment. I have added 8 pounds and will continue the bulking-up. I am also hitting my exercise bike to get my body in the best shape with 15 minutes daily [4 times/week]. Right now my main question is what other things can I do to get myself prepared for this ordeal.

Any suggestions would be appreciated.

Barry
Stage 4 with primarary in tonsil [removed]. Cancer appears localised to 1cm at base of tongue and in two lympth nodes.

I am so sorry to hear Barry-My dad had all of his healthy molars pulled asap. They encouraged him to do physical therapy 7 times a day for 5 minutes to keep the jaw in shape:
Open your mouth as wide as you can and shove that many tongue depressors in there. It keeps your muscles primed. For my dad, the healing of his pulled teeth would have been a delay in treatment. Also, practice obsessive dental hygeine to get in the habit. Floss, swish, brush. The dentist said if you do choose to keep teeth with caps, the radiation has been known to bounce back and cause burns in the cheeks. You can have an acryllic brige made. Also get flouride trays. Bulk up Barry! Eat tons-my dad is gaining weight right now- Cut out smoking and drinking, keep VERY hydrated.
Peace and love.

Hello,
Barry,

Sorry about the pulled molars. Our radiation at Rex in Raleigh is precise enough allowed me to keep my teeth. I used the floride trays nightly and have no problems going on 10 months since diagnosis. treatment finished in early Dec and I had my neck disection on Jan 31. I assume you have a stomach tube. I found that Boost or the Walmart brand to highest in calaries. I took three bottles, three times per day. That turns out to be about 2100 calaries. I lost 65lbs, but needed to lose the weight anyway. I also had the SCC at the base of the tongue and two lymph nodes.

If I can help further, my email is [email protected]. I will even give my phone number if you wish.

Steve

I will be praying for you Barry. You can do it one day at a time.

God bless,
Barbara~

One thing I would suggest. Looking back on what I went through and what I would have done different BEFORE treatment that would have definitely helped... here goes.

In my case, it was like I hadn't caught any sort of break since October. Of course, I didn't realize I was sick or had cancer prior to diagnosis, but it seemed like I was paddling as fast as I could with no sort of break. You see, there were the holidays and commitments to having to travel, the shopping.. blah blah blah.

It seems as soon as the plane touched down I had the diagnosis of cancer and then blammo treatment. By all means, bulk up as fast and as much as you can.

Looking back, I wish that I would have had more time to have been better organized. I tend to stock up on alot of stuff that the family needs anyway, but it sure would have given me piece of mind to have everything organized, sorted and ready for my couple of months of "inactive" down time. We had been thinking about perhaps hiring a maid service if things got too out of control, but we sort of struggled through and while my house wasn't exactly up to my standards, we got by.

Thanks to these message boards, I sort of knew that I was not going to be up to much. I took suggestions from friends on DVD's to stock up on and watch. Started a list of all the movies that I would probably enjoy watching, books to read etc... (this all pretty much depended on my energy level. There were weeks that went by that I had a hard time reading much of anything, nor did I really care)

I tried to anticipate and prepare for the couple of months that I would really not be up for the demands of my world and also I made sure to organize as much as I could. I made a list of phone numbers and posted it by the phone so my spouse could reach people easier without having to dig for numbers. I put together a day planner that was strictly for keeping track of appointments. Every business card I came across whether it was a doctor, dentist, pharmacist or medical supply place, I would file the numbers. I could also keep track of all the medications and the date of prescription on one page. This comes in handy when someone asks you what medications you are taking, because not all departments of the medical team keep track of it as well as you can.

I also stocked up on comfort foods and convenience foods for the family. On one hand, I wanted to eat as long as possible, so I had plenty of soups, ice cream and yogurts.

This sounds kind of goofy posting this now. I felt better trying to prepare myself. It did give me a bit of a feeling of control just anticipating what I was going to need, so when I felt too bad, I could have it on hand. Much of it was "comfort" type things like picking myself out a decent bathrobe, slippers and pajamas that would work with a PEG tube. While I was feeling still with it, I bought comfortable pull on pants, camisole tops and sweaters that would not need to be removed for radiation treatment.

Jen

Barry,

I have to agree with the suggestions about "bulking up" ahead of time. I was very committed to keeping up my nutrition levels during radiation, but still lost around 15-18 pounds (from a starting point of 130).

I'd also recommend that you think in advance about what elements of your daily routine can be temporarily handed off to someone else (or postponed) in the event that you get to a point where you can't realistically keep up with all of them. The effects of radiation can sneak up on you - I know I felt quite good for about the first three weeks and thought I was going to skate by with no significant problems, but I was wrong. Before my treatment started, my typical work week was around 55-60 hours; by the middle to later stages of radiation (and several weeks beyond), it was down to about 30 hours. The good(?) news for me was that, even with the skin and mouth burns, thrush, and severe chewing and swallowing problems, I was able to keep up with at least a part-time work schedule, which allowed me to keep some sense of "normal" in each day.

Good luck with your treatment -- please keep us posted as you go along.

Cathy

I agree with the planning ahead as much as possible. Like Brainstorker, I had done a lot of reding on this board so I knew soomewhat what I woudl be facing and tried to plan ahead as much as possible. here are some things I did

1. Created a medication/symptom log sheet in WORD, one per day, printed out 50 of them, three hole punched them and put them in a notebook binder. I figured with the meds I might be getting this was a palce to keep track of what I was taking and when I took it (I'm terrible abotu rememebring if I took a pill or not and when it gets to about 8 different meds it is really handy to have a written log. I alos wrot in this any new symptoms so I could recall when they started when talkinbg to a doc later. I'm still using these.

2. In the same notebook, I had some pockets that had articles I had printed out reviewing methods of treatment of mucostisis, etc. Any info. I thought might come in handy to ask about wne in there. I ahd one pocket just for the prescrption drug printout of info. that comes with each prescript. (with the info. about side effects,e tc.) When I was at my most out of it, my husband kept track of things in this notebook.

3. I also stocked up on some of the over-the-counter things that people recommended here: gauze pads (small ones for putting in your mouth to help soak up mouth giunk), Puffs Plus tissues (buy lots of these), tussin cough syrup with guiafenesin (helps break down mucous when used through the tube), baby toothbrushes, biotene products and foods that were easy to eat (cream soups, fruit in syrups, applesauce, small containers of soy milk). I had my chemo from noon to late afternoon and so needed lunch during that time--I got small packs of canned fruit and soy milk and other things that were easy to eat/drink that could be carried to the cehmo easily.

4. I also made a list of phone numbers of everyone who offered some type of assistance during radiation and wrote next to each name and number what they could offer and when they had time to help. This came in really handy when my husband had a work commitment that required he be away every evening for 6 days during my final week of radiation--without much help from me, he called my friends and got people to come stay with me during thise evenings.

5. I had already handed over most of the my work to other folks but I was teaching an online course still just to have some toehold of normalcy while I went through treatment and before rad I made sure I had a colleague trained to take that over in a pinch, although I ended up finishing it myself it was good to know if I got really out of it, there was someone else who could pick it up.

6. Most of this is actually what other people have said, I guess. The last one is one that maybe only I did. I was afraid I would get depressed and maybe discouraged during treatment so I wrote a list of things I loved about my life (my pre-cancer life) that made fighting for my life worth the pain and effort. And I wrote myself little notes of encouragement. It turned out I didn't go back to those too much during treatment, but it was like the act of doing it helped me get strng in terms of not being easily discouraged (well, until after rad. was over at least--I have to admit I've gotten discouraged about the time it takes to heal!).

7. In retrospect, before rad. started I would have hired someone to come in and clean. My husband kept saying he would call people during treatemnt but kept "forgetting" and so we have just had a dirtier than usual house for the last several months (today is actually a big housecleaning day for me since my brother is coming to visit starting tommorrow and I've realized in the last few days exaclty how bad things are--especially things like dusting which my hiusband just doesn't ever do!) I would also have hired someone to help with garden care. If you are one who weeds in your family, be aware that you really shouldn't be doing that during chemo and that those weeds get out of control fast when no one does it!

Barry, Hi. I'm the caregiver in our situation. And you have gotten some good advice. The hint to get every "business card" and phone # of the people who are treating you is going to come in handy later. Also,I got a 12"x81\2" calendar and started filling in each day from the time John saw our family Doc and got referred to an ENT. That calendar has never left my side since. It has all test and scan dates, all Dr. visits, day he entered hospital for surgery and day dismissed, 1st rad Dr visit, 1st rad tx, etc, etc.Because the Docs, etc. were 150 mi away, we also kept up with all mileage and hotel expenses for tax purposes. I have used the calendar several times in the last 2 weeks, to argue with the Ins folks, to fill out Soc. Security papers, etc. If I hadn't kept it, I would have never remembered the sequence of events. And John was too out of it to remember much. Sounds like you are doing great with food. Keep it up I would also suggest that you don't put much on you dance card starting ater the 2nd or 3rd wek of rad. Much good luck. Amy

Another thing I just rememebered I did that was really helpful was to set up a way I could update people on how I was doing over the internet so that not everyone would call every week. I set up a Web page on caringbridge.org.

Hi all --

Thaks for all te good advice so far (I am Barry's wife, Gail). I happened to hit the 'net before he has this a.m.

Lots of great suggestions -- some we already implemented since it was obvious that things were flying pretty fast -- like, I'v made up a list of contacts for every part of his team and making sure we know *who* is in charge of each stage. Yesterday must have been "call Barry Cooper" day at Hopkins -- started out with his medical oncologist at 8 am and all through the day, setting up appointments for next week: nutritionist, dental oncologist, blood draw, chemotherapy team and medical oncologist assistant -- all on Monday and Tuesday as Hopkins is trying to give him some time before treatment to get over to see his 98-year-old mum in England. Although she is amazingly fine (lives alone, can you believe!) you never know at that age and Barry knows that he will not be able to travel for months if she should take a down-turn.

He is not having induction chemo as his disease appears to be stable (for the moment) and will start concurrent chemo (carboplatin) and tomo radiation on August 9. He will have to get a peg (ugh!) but they apparently do this just before treatment starts. Will find out more from the nutritionist Monday. His only concern is that he may need dental work that will preclude travel, but again, will find that out Monday.

On that regard, what has been people's experience with denal crowns? I would think -- since they are a lot of metal -- that they would be best removed and the tooth capped with those plastic "temporaries" but I haven't read anything about that on the forum. He does have 2-3 teeth with lots of fillings, too...

One thing that is great is that our friends are really into helping -- one signed Barry up for Blockbuster's DVD's through the mail and we keep getting gifts of (fattening) foods. He has gained 8 pounds since his low point after the tonsillectomy and he has two week's plus to go. I have to be careful, I am not trying to bulk up! <gr>

We stopped our cleaning service last year to save a few bucks but it will be reactivated! This is going to be hard enough without having to clean house...

Again, keep the suggestions coming and we will update everyone as things progress.

Cheers, Gail