Hi Guys,

Okay, so yes, you all told us so and I knew you would be right on as usual. It's treatment #10 for Dave today and the last few days he has been steadily becoming less interested in food, more fatigued, and less happy overall.

Short post here because I need to regroup before he gets home...but this is so hard and I am so glad you are all with us.

Trying hard to stay afloat,

Kim

Kim,

I made it through the radiation without a PEG tube. I also fought it tooth & nail it sounded so painful and I hadn't found this board yet. Mike gave me small meals of scrambled eggs, cream soups, baked & mashed potatoes, and of course Cheescake room temp(we bought one yesterday for company this weekend & I wasn't sure I could force myself - but I will)Since I'll be starting the keep weight on thing again. In the last year I have lost 35 pounds. Now I weight in at 117 (lost 3 last week)

My docs called it "pink magic" - they used Pepto as a third ingredient. I comtinued to use after radiation for my throat. In my case the end was harder because of swelling and mucous buildup. The saltwater gargles do help...but I also found the carbonation in 7 Up easier to cut through and swallow than water. A straw was a must.

Called the Additions number and they will sell to you direct. 4 cans (case) for $98, 200 uses. They will also give you the name of a sales rep in your area that can tell you where to buy just 1 can to try.

Tell Dave my new phrase for getting tired and feeling good "Ebb & Flow" I'm doing the "Ebb & Flow" thing.
Take care,
Dinah

Dinah:

As usual, you are a wealth of good advice. I am going to try some of your suggestions about foods and see how Dave can tolerate them. I went to Costco and bought the "prescription cheesecake" at 500 calories per slice which he has been trying but his main complaint is that things are starting to become tasteless and he is losing his appetite. Any ideas about how to make what you can get down taste better?

Dave is going to talk with his radiation oncologist on Monday to see about a PEG tube. I think the real issue here is deciding if the PEG tube is a temporary ally when it feels like you have just gotten rid of all of the post-op tubes!The whole radiation thing, although a necessary but vital part of overall outcome, feels like such an evil entity at present. It is so hard to watch Dave appear to be "going down" even when I know objectively why it's happening.

I have a new round of respect and admiration for all of you veterans..this cure can bring you to your knees (and everyone around you) but damn if we won't come out stronger.

Thanks for the info on the Additions product-you beat me to the punch! I think it sounds like a great option to try and like the idea that you can purchase on can to check it out first. Have you tried it before?

Interesting about adding Pepto to the mouth rinse. When I did oncology nursing we came up with some bizarre combinations but they work and that's what counts!

Now, catch me (and your many other OCF fans) up on how you are doing?I'm thinking about you every day and sending along positive thoughts.

Talk Soon,

Kim

Do the PEG, don't wait for the weight loss to begin. Nothing you can do is going to make anything Dave eats taste any better than the box it came in. It isn't about the food; it's about those nuked taste buds, which are now history until about 90 days after the end of treatment. While there are some that tough it out without a PEG, I wouldn't do that fight. It is an unnecessary battle. Struggling to swallow even soft bland foods will soon become more trouble than it seems worth, and nutrition will suffer, ditto the body

Kim,
Ditto on the PEG tube. It is my best friend. Once the food quits tasting good, as Brian said, it just doesn't taste good. Then comes all the mucous and the tongue that burns when food touches it. Getting the PEG was a simple procedure and I have never really had trouble with it. I have played golf with it in, gotten dressed up and gone out, etc.
The other thing that I like about it is that I can use it for a variety of stuff. I could not swallow laxative pills so now I inject some Chinese tea that works as a laxative. I also inject dissolved or liquid pain medication when I need it.
I truly could not have made it without the PEG. I have not eaten solid food in a couple months and at times it is even difficult to swallow water.
A dietician at MD Anderson recommended Ginger Ale to cut the mucous and I think that it actually works a bit.

Hoping for the best for y'all.

Danny G.

Kim and Dave........With most things regarding treatment I say "to each his own" except when it comes to the PEG. I gotta agree with both Brian and Danny on this one though: get the PEG inserted ASAP. It will save you much grief in the long run. Soon your desire for eating will pretty much go right out the back door. Everything tastes like cardboard, and once the mucous in your mouth begins getting thick it is almost impossible to get creamy food down. Eating becomes a constant worry without the tube; always second guessing if you're getting the proper nutrients and enough of them to promote the healing process. Hydration is another issue. I cannot tell you how many times I ended up in the ER, sick as a dog because I couldn't keep myself hydrated and that was with the PEG tube in...there is no way I could have kept myself hydrated just drinking orally. You'll have some minor discomfort when they insert the tube but after that it is pretty much a walk in the park. It doesnt stink (my biggest worry) and it is easily hides beneath clothing. I kept my tube in for a year. I probably could have had it removed sooner but I didn't have the confidence in myself before then so I kept it in longer and without problems.

The first few weeks of RAD I was able to eat, and did eat buckets of cold watermellon (minus the seeds of course) and canalope. They were in season and actually soothed my mouth the first few weeks of RAD. Just thought I'd toss that in, in case you're looking for things to nibble on right now. Towards the end of RAD I was totally tube dependent and remained that way for at least the next six months if my memory serves me correctly.

Continue to keep us posted! Sending good thoughts your way......SIncerely, Donna

Packer went without a peg tube..........doc didn`t want it......stupid mistake.....things get worse before they get better.....so go, go, go, for the peg tube!!!!!!

Hi Brian, Danny, Donna, & Dee:

Funny you should all be posting back...I feel like I had you all in the room with me yesterday when Dave and I had a straight talk about the potential value of the PEG tube. Dave was initially in Brian's early camp fighting tooth and nail ("another tube means I'm a sick person not in control and I don't want another hole poked in me") but he is also rational and knows the greater good (an faster healing) is likely to be facilitated better with the PEG tube.

As I mentioned earlier, the key issue seems to be reframing the tube and viewing is an ally as opposed to a foe that represents a step backward. I echoed Brian's same words to Dave yesterday-I just don't think the battle to eat is a necessary one to wage if it isn't functionally possible as the radiation progresses and the nasty side effects abound. As always, this whole deal is teaching me new things about being a patient I never envisioned even as a health care provider. Today's lesson is that a tube, even when viewed as a no brainer (stick it in-what's the big deal?) may represent a negative (and scary) step to someone who has just finished working so hard to get RID of all of the post-op tubes. For Dave, this step feels like another concession to the loss of control cancer (and the thrill of radiation) brings.

Dave values and trusts the opinions of all of you we now count on as friends and I will encourage him to look at your replies here to help him make a comfortable choise to go forward with the tube.

Thanks for taking the time,

Kim

Just one more pro-PEG message. I was probably more resistant to the idea of one than anybody in the last decade, but did a 180 after I had it. Lack of taste, coupled with sores in mouth, makes eating distasteful if not impossible. Even with the tube I lost a lot of weight. Get the tube. There is no downside. Later, when you regain some taste and begin to eat again, it is still good to have it to supplement daily calories, and as Donna pointed out, to stay properly hydrated. There were weeks when this was my ONLY source of nutrition, and I would have been in Big Trouble without it. Get the tube! This is the only aspect of treatment about which I cannot see two sides. Truly, this is, if not a life saver, a life enhancer.
Joanna

Kim,

Oh so true about the ally part - the PEG tube was presented to me as a "if you aren't a good girl and keep your weight we are going to do this" It seemed to be a threat not a help. One thing that probably would have made my and Mike's life a little smoother.

Another woulda', shoulda', coulda', in my adventures before I found OCF.

I did not fight the idea of a porta cath, that was put in 2 weeks ago...it was presented to me in a positive manner.

Take care,
Dinah