OK...2nd 'on' week of two a days rads and chemo week in the books. That 20 rad treatments down.

Side effect status....

No Nausea yet period....knock on wood.

Mouth/tounge sores starting to build a bit. Ulecerease helps there and NO pain yet. Dr. did give me script for Hydrocodone (liq) if case something comes up during 'off' week.

Biggest thing on the mouth sore thing seems to be my LIPS are a bit swollen. Using some samples of Aquaphor and Biafine that seems to help. Anybody else got any suggestions???

What's strange to me is EVERY day is DIFFERENT big time when I wake up on what I'm facing as far as side effects. One day it's the attack of the mucus (I have been taking Mucinex tabs that seems to help here a lot). The next day it's the harder to swallow thing. The next day it's the super dry mouth thing. The next day...sort of normal (NO mucus..NO swallowing problems). Weird. Not what I expected. I expected symtoms I've read about here to start and just get worse and worse. Not completely come and go.

The ONE thing that IS constant is I'm still losing my total desire to eat. I've been experimenting every day and just can't find ANYTHING that even resembles tasting decent.....period. A good tasting..satisfying meal is just a memory now which is a bit depressing. The best I can do is come up with some things that are tolerable to get down just so I can get the nutrition I know I need. Most of the time it's at least 4 cans of Boost w/protein and a couple litres of water day as my minimum goal. I'm dropping weight like crazy (had about 180 excess to start with) but the Dr. doesn't seem too concerned yet. My blood work keeps coming up good and I'm not feeling overly fatigued or anything (if anything...I've gained a bit of pep in my step from weight loss), so losing the weight is kind of something 'positive' thru this ordeal .. in my case in a way.

Still drving the 60 mile round trip to treatments twice a day and having no problem there. Sure hoping I can continue to do it this way and avoid that 'hosptial' stay option on those 'on' weeks...hopefully the WHOLE way. I think the pain meds if/when needed down the road will play into this.

Nobody has mentioned the Amifostine yet. Not sure I'd want to go that way or not? Been able to avoid the nausea thing totally so far and wouldn't want to push that envelope since my nutrition is almost bare minimum as it is. Any loss of nutrition and/or hydration due to vomiting could defenitely complicate things.

Way to go Gary! Sounds like you are doing great so far, even with the loss of appetite.{Did you really weigh 180 lbs more than you should have when this started?} If so, You should really have a spring in your step at this point. Best wishes to you. Amy

OK...ready to start 3rd 'on' week of double rads plus chemo today.

What I've found so far is the 'off' weeks are harder than the 'on' weeks. Must be because on the 'on' weeks you running around so much getting all those appointments in your mind is off the effects a bit. And, the 'off' weeks is one big chore trying to cope with the effects.

Yes JAM...I definetly was about 180 lbs overweight on 1/1/06 weighing about 390lbs. I was diagnosed about 1/19/06 and right now thru results of treatments and effort to lose some weight in Jan I'm at about 340lbs.

I was actually losing TOO much weight the past couple of weeks and sort of went into dehydration. They came pretty close to checking me into hospital to contol things. Instead they set me up with 'home care' people for bags of good stuff to drip into my 'port'. I like that more than laying in a hospital bed all day. It's easy to do and take care of. The 'port' was an absolute great decision at beginning of this. Don't even think twice about getting one. I haven't been STUCK with a needle in the arms or wherever in over 2 months now.

Oh well...got to gear up for my 2 a days.

GAry, Can't think of a tougher way to lose weight, but over the long haul, it's got to be good for you to be slimmer. I am going to insist on a port for my husband when he starts chemo [soon] His veins are really hard to hit. Hope you continue to handle this so well- do try to stay hydrated because that is really important. Amy

Way to go Gary.
It sounds like things are progressing normally. As you know, I went through the same "2-a-day" protocol you're going through.
You're right, the off weeks seemed to be the toughest. The side effects seemed to peak on Wednesday or Thursday, and just about the time I started felling pretty well, it was time for another week of 2-a-days.
Keep up the hydration, and be careful not to fall in love with the weight loss. It's still important to get nutrition to help with healing.

Hang in there,you are almost half way there.

If you still have my phone number, give me a call, or drop me a PM and I'll send it again.

Good Health,

Chuck

OK...THREE weeks down of double rads plus chemo. That 30 rad treatments. Guessing about 15 to go there. Seemed to have zipped by so far.

Still able to drive myself to treatments twice a day (about 60 miles roundtrip) no problem at all so far. But, then again, have had no real major pain issues so not taking anything real serious for that. I do NOT want to do this from hospital and will make every effort to keep it this way.

Food still tastes so bad...just don't want to eat. Forcing down about 3 Scandishakes a day (which is better than trying to get down TWICE the amount of Ensure or Boosts). To me so far, this is most depressing part of this thing is that I can't enjoy ANY food at all. I sure hope this solves itself down the road. This liquid diet thing can get pretty darn boring. Weird thing is I should be 'hungury' you would think. Just not. My poor stomach must be the size of a postal stamp by now???

Staying extra HYDRATED thru the port with the stuff (about a liter a day) 'home care medical provider' has set me up with. Very easy and highly recommended. At least I can feel secure that I'm getting the minimum probably needed in that area and any water I can drink during the day is a bonus.

One WEIRD thing that has happened is one morning I got up and the 'balls of my feet' were really sore (and still are)???? Guessing the good old 5FU had something to do with that?? Anybody else experience this? Anything to be worried about. Will it go away soon?

The mucus thing comes and goes still. I'm thinking the Mucinex Tabs I'm taking twice a day (12 hr release stuff) is really helping keep it in check a bit.

Getting a real nice sunburn in neck area for sure. Trying to keep it coated using Aquaphor after 2nd rad treatment each day and on off week. Nothing really bad, no peeling, or major sores yet.

The burning lip thing seems to be getting better or I'm getting better at taking care of it. Every time after sleeping it's a routine to get lips back in shape a bit with some care.

All in all....feel lucky so far I've avoided some of the issues I've seen posted on here like the Nausea and Pain that some have experienced at this stage. KNOCK ON WOOD!!!!!

Now for the 'off' week and see what fun stuff that brings.

Hi Gary,

Happy to see that you are handling things so well. Good luck with the balance of your treatment.

Although I never had chemo or radiation I know some things from one of my partners who has been on chemo for 3+ years for multiple myeloma. I would look into "peripheral neuralgia" for the problem with your feet. Not sure if this is it, but it's a place to start.

I'm sure you will hear from others here that have had the same thing.

Jerry

Gary - keep the posts coming. i'm starting radiation in 2 weeks and have found your postings very helpful. good luck

FOUR weeks down of double rads plus chemo.

Kind of seeing the light at the end of the tunnel now.

The good news.....

1. Still never have had ANY issues with nausea...knock on wood
2. Still never have had ANY issues with pain...knock on wood
3. The past week they really cut down the 'field' of radiation and now the treatment is only taking about 8 minutes. Guess this is really good sign things are finally winding down.
4. Swallowing function seems as good now as when I started. Too bad food taste so bad I can't use it more.
5. Been able to make the 60 mile round trip drives no problem for treatments.

The bad news (which ain't that bad)....

1. The past couple days I feel like I've been hit with a Mack Truck. The 'fatigue' card is being played now and I'm really getting tired of being tired.
2. Any solid food still tastes SO BAD I just don't even want to even attemp it. I'm doing this without a peg and the Scandishakes are working out just fine.
3. My face/neck/back of neck has that three-tone look now (places where radiation never hit, places where new skin is coming thru, places where it's pretty burned and will be soon. A bit of a nusance...but not too bad I guess. No real pain to speak of yet.

The way I look at it....I've had a few goals thru this....

1. To finally get treatments started (it seemed like it took forever).
2. To make it THRU the treatments with as few complications and bad side effects as possible.
3. To reach that mystical 'low' point which is supposed to be about 2-4 weeks AFTER treatments.
4. To begin the 'healing' process and get my life back to normal.

With one more week of double stuff it will be TWO down and TWO to go.

Now to see what fun stuff my 'off' week brings. It's always something.

Gary, It sounds like you are doing great Keep it up. Amy