Update - Shortly after I posted my original post, I called the GI doc to report that my temp was 102. Readmitted to the hospital. After blood tests, a CT scan, IV antibiotics and goofy juice, (morphine), it was decided that I must have had a viral infection, rather than a bacterial infection, because my white count was so low. I'm fine now and back at home.

This has delayed my start a bit. Radiation now starts Thursday, 2/15 and chemo starts Friday 2/16.

As for the port, I can now say that I'm very glad I have it. I have been a life-long blood donor. As a result, the veins in my arms are well used (scarred). With this little episode of the last couple of days, after many failed attempts to start IV's in both of my hands, wrists and arms, I was grateful that they were finally able to tap the port in my chest. I now, cannot imagine going through chemo without it.

Here's hoping this was the worst hiccup I encounter in my treatment journey.

Well, the prankster God, weilding the cosmic sledge hammer, beating the crap out of me, is working overtime. I now have a cold! Treatment is delayed yet another week and scheduled to start 2/20. Not that I'm exactly looking forward to treatment, but I am looking forward to completing it!

As to the weight issue, I'm 5' 10" and about 240 lbs. I definitely have some "reserves". However, when I mentioned this to the nutritionist, she got this deer in the headlights look and exclaimed, "Oh, no! We don't want you losing any weight until after you've completed treatment". Now, I've been doing a lot of research and spent a lot of time educating myself, (a good deal of it here), and preparing myself for this upcoming fight and I do understand how crucial it is to remain hydrated and nourished throughout treatment, but...

Anyone care to, ahem, "weigh in" on this topic?

BTW, the nutritionist is recommending 90 grams of protien a day for me. I mentioned that I had found a soy protein shake mix available online, made by Revival Soy. Its not high calorie but it is 25 grams of protein per shake. She was unfamiliar with it. I found it when I was looking to introduce more soy into my diet to mitigate menopause symptoms and have been very happy with it.

Hi Jellybean;
I was being "mildly sedated" for both installs, and "next thing I knew I didn't know nothing" (LOL) which worked just fine for me. You will be glad you have both. Like Pete, my PEG tube became my "best friend" when I couldn't swallow at all for a few weeks. Also, I played the tape game for a while until I finally figured out that a safety pin through the T shirt was easier to remove than tape on the skin. The lanyard idea sounds cool also.
I was wondering why I needed the port for 3 chemo doses. What I didn't realize was how really handy it was when all the flushing and hydration was needed with the chemo. After losing weight through treatment it protrudes some but it doesn't bother me at all. It saved a lot of veins and bruising.
As far as Protein goes, I'm getting that lecture again from my speech therapist. I found some powders at GNC that offer up about 650 calories and 32 grams protein per serving (called Muscle Milk). They also sell weight gain powders that go all the way up in the 2,000+ range!!
Good luck with shaking the cold so you can get rolling.

Best Wishes,
Steve

Hi Jellybean,
Looks like we both will start radiation on 2/20. The oral surgeon who did my evaluation recommended lots of chamomile tea for my water bottle (suppose to help with oral health) and lots of tofu for my protein. On my first consultation the oncologist's nurse exclaimed that their goal is no weight loss. I doubt they are very successful with that. Even through I have extra weight to spare, I'm committed to eating and drinking nutritionally dense food and trying to maintain my weight.

Hi Jellybean,

Be sure to try, try and try (it is this enough emphasis?) to swallow *something* -- even if only sips of water or liquid nutritonal formula -- during treatment. Make sure you have adequate pain control to allow you to do this (if it is a matter of pain, which is usually is).

It is all too easy to lose the ability to swallow through disuse during treatment, our ENT and also, onc nurses have many stories of foks permanently on PEGs who didn't have to be but who stopped swallowing and everything went (as the Brits says) pear-shaped.

You should make sure to have a swallowing evaluation done about 4-6 weeks (depending on healing) after the end of treatment. The therapist will prescribe exercises to strengthen and restore normal speech and swallowing if these have been impacted by radiation or surgery. My husband actually ate all the way through treatment, never used his PEG, but still had a number of swallowing issues due to radiation damage. By religiously doing the exercises he was pretty much back to normal within a few months and now 18 months out, is fine.

Tonsillar cancer is highly likely to be due to human papilloma virus, at least in non-smokers -- have you been tested for this? It has a far better response to treatment and also, far less likely to recur after successful treatment. Ask your doctors about this -- testing can be done at Johns Hopkins if your hospital doesn't have the facilities.

Gail

Jellybean,

Try Carnation Instant Breakfast VHC. Not only does it have 560 nutritionally balanced calories in a 8oz can it also has 23 grams of protein. So if you drink just 4 cans you will get 2240 cals and 92 grams of protein plus all the other nutrients in the can.

I did not have a tube and believe me the VHC was a lifesaver when it hurt like hell to swallow.

Thanks to all for your advice and suggestions. Right now, I'm just so frustrated and P O'd about this damn cold! Which I caught in the hospital, by the way! I guess this must be what a rain delay for the World Series feel like. I am ready, prepared and psyched for the games ... only to be put on hold.

Gail Mac, as for my PEG, it is my hope and intent to not have to use it at all (I'm an optimist by nature), but because of my reading here on this site, I wanted to have it put in before the start of treatment and before it was needed. I am a foodie - as evidenced by my girth. I love good food (I fancy myself as a pretty good cook), and good wine. I also happen to live in a serious wine region. So, among my major worries is preserving the ability to swallow and my sense of taste. That being said, I will not hesitate to use it (the PEG), or whatever necessary to get through this and to recover as fully as I possibly can. As one friend said to me, "Just maintain that 'Tough Broad' attitude and you'll come through this fine".

Simple Gifts, I'll be following your posts and thinking of you as you and I will be traveling similar paths on opposite coasts.

Jellybean --

It is a very good idea to have gotten the PEG beforehand -- this forum is full of cases of folks who didn't and then had to have one put in when they became unable to maintain nutrition (and especially, hydration) by mouth. I spoke to our radiation onc nurse last Monday and she said they had had a rash of folks (at Hopkins) who had refused a PEG -- their legal right -- and who now were having to have IV hydration and will end up with a PEG anyway, having the surgery while in much worse shape.

So please don't interpret what I said as an urge to not use the PEG -- use whatever you have to, to get through this difficult process. But try to keep swallowing - as I said, even if only sips of water -- and make sure your nurses and doctors help you do this by providing adequate pain medication.

You will lose your sense of taste, but perhaps not completely -- my husband was able to taste certain things, esp. some fruit flavors as well as seafood (!) although flavors were muted and faint. So I made a lot of strawberry smoothies with high-calorie nutritional supplement as a base, as well as a pureed cream of crab soup that is quite nice! However, he also said (frequently) "Food is Medicine" so ate stuff that also had NO flavor, at least to him.

Folks on this forum have a lort of recipes for soft foods that go down as well as can be expected!

Good luck, keep strong!

Gail

Hi All,

I had the yank and pull removal of the PEG as well and have to say that it was the most painful experience I have ever had. They could not deflate the bubble all the way that holds the tube in the stomach and I damn near passed out when they pulled. I have been told by many doctors that I have a high threshold for pain if that tells you how painful it can be.

Jim

HI all,

My husbannd is in week 5 of tx and is using his peg tube all meals. He has developed a bad case of hiccups and the nutritionist seems puzzled. Anyone have a clue or any suggestions as to how to calm them?

Bette