Barb:

Great advice, good news and info thanks!

I took notes and will review with the RO tomorrow.

:-)

- Michael

Gail, That doesn't make any sense, that they would care about such small amounts of vitamins in a multivitamin when he'll get that as soon as he goes on any kind of liquid diet. I have a hard time believing those more close o the RDA amounts of antioxidants really make much of a difference one way or the other, quite honestly.

You really need a microscope to read the mgs listed for each vit on the Jevity can (my super duper magnifying reading glasses made the print barely legible--obviously it's not toom important to them that it can be read) but I'm pretty sure that if I take 6 cans/day, I've been getting 450 mgs of C just from that. But, as I said, my oncologist made clear it was the larger doses of stuff that I needed to stop doing during treatment.

Although I was told to lay of C and E altogether before surgery. If Barry is getting a PEG tube, maybe that's why they are saying none at all? Otherwise, I agree it seems a little inconsistent.

Michael, I have been thinking about you and want to share my dad's experience (since you are embarking on what he did 3 weeks ago).
He went from eating pizza with us one day to radiation sores in his mouth the next. Since he wasn't expecting the pain to creep up on him like that, he spent the whole week trying to catch up with the severe discomfort. Please, get your pain meds now and the minute you get a hint, start taking them. He is now in the hospital with fever spikes-his labs are NORMAL. From what I've learned, this is usual.

Shawna:

Thank you very much for the great suggesstions.

I am sorry your Dad is hospitalized I will be thinking of him and wishing a swift return home.

What do they do while hospitalized? Do they still give radiation?

I had my PEG Tube installed yesterday!

UUUGH!!!!!

The surgery went fine, and the incision looks good and doesn't hurt much at all....What killed me was the GAS they pump inside the tummy (dilate)..!

After wards they said I could eat normally...(Guess they couldn't tell by looking at me that "normally" means a lot!

So, a couple of hours after the proceedure, we were at a sandwich shop and I had a turkey sandwich...

Well...30 minutes later........YIKES!!!!!

MAJOR, MAJOR, MAJOR DISCOMFORT!

I felt like I was going to explode (almost wished I did)!

The 'pain' spiked with spasms hitting a 9 a couple of times..

I couldn't find any comfortable position, and was getting dehydrated.

I called the GI surgery team and got a Dr (fellow) on the line...

He said to just tough it out, and deal with it..

Well, by now most of you know that doesn't work for my personality, so I hung and called back 45 minutes later.

Still in MAJOR pain, I paged the surgeon.

He immediately called me back.

He suggested taking some "Gas-X", and Tylenol.

So, (one thing about NY is there is a drug store every 100 feet!), Seth got me both, and I had him get some Baking Soda and Club Soda too.

I took them all, and it helped a lot, but not 100% resolution.

So, it was a LONG night...Didn't sleep too much, and got a fever around 10:00 PM.

Fever has been up and down, helped with the Tylenol, and I have an appt this morning with the Oncologist so we'll discuss this, but I think it's a normal reaction to the trauma of the incision.

Anyway the pressure is much better this morning, but now it feels like I just did 2,000 sit-ups!

Moving slowly, and getting in the grove for my appt.

That's it for now...

Radiation setup is Friday, with actual rads starting Monday.

Thanks everyone for being there for me!

- Michael

Michael,
Thoughts and prayers for a healing experience in New York. My husband is having similar experiences to yours except here in Cleveland. He had a tonsillectomy 7/6/05 and began radiation/chemo 8/2. He got his Peg tube 8/5. You seem to be going into this quite well-informed. Hope you meet many wonderful people along the road that carry you through as we seem to be meeting - not the least of which are these website friends! How is Seth holding up?
Janet

Michael,
Don't be shy about calling those docs. Other than one or two sharp pains before I left the hospital, my PEG never caused me any problems. I don't think that it should be painful. Heck, I used to work out and play golf wearing the thing. Best of luck on your treatment. My friend from L.A. was also treated at MSK and they dosed him pretty good with chemo and he is still having some numbness in his feet...ask them about that.

Take care in the big city,

Danny G.

Ahhhhhhhhhh you hang in there Michael. Believe it or not before you know it the treatments will be over and you will be thinking "wow that time went fast" Wait and see.
I will be thinking of you ans wishing you well.
GB,
Barb~

Hi Janet...

Thanks for checking in, give us an update on your husbands journey when you have a chance.

Seth is doing OK so far, thanks for asking.

He made at least 4 trips to the pharmacy yesterday and didn't complain once (which is unusual since he typically complains even if he isn't running around spending money on expensive things for me), just kidding, he has been quite the trooper.

I am grateful and lucky to have him to help me through this.

Where in Cleaveland is your husband getting treatment..?

Danny, hi. Sorry I didn't end up in Houston, I was looking forward to hanging out!

As far as the neuropathy, the Dr today again went through the possible side-effects of the Chemo, which all sound reasonable. The biggest concerns for long term effects are neuropathy, and hearing loss.

I have an audiologist's appointment on Thursday to get a baseline for future comparrison.

I am also going to see the Opthomolgist and Dentists on Thursday also.

Then Fri, I have the Setup for Rads.

In the meantime we are finalzing our apartment search, trying to narrow it down...I think we are going to go for convienence to Sloan, vs. extra nice.

I figure a few weeks in to it, I'll be greatful the apt is less than 50 feet from the entrance to Sloan :-)

Barb! Congrats!!

Wasn't today your last day!?!?

Thanks for sending me the good wishes!

Hi Michael --

Barry had his PEG yesterday and Hopkins Dr. specifically said -- liquid diet only for 12 hours and then eat carefully for a day -- so guess he knew something -- anyway Barry's incision hurt last night (like you said, the muscles) -- took Percoset 3x and had problems finding a comfortable sleeping position. But this am it only hurt a bit, took one painkiller before leaving for the hospital for his tomo walk-through, and none after that. It hurts if he presses around it, but all day he's been able to eat normally. Just burping more than normal.

We were really happy about this, some folks have had nausea problems after the g-tube was inserted.Today, the chemo nurse showed us how to flush the tube once a day and how to clean the dressing around it.

The walk-through (where they check the plan and re-scan to compare with simulation) took a long time which was a real pain as he is somewhat claustrophobic and being in the mask for so long started to get to him. They recommended that he bring some CDs tomorrow to play to distract him.

The fact he's gained 16 pounds since the simulation (sort of a record, he attributes to 3 weeks of cashew nuts and high-calorie smoothies) meant they had to re-calculate some things but they are very pleased he gained weight as he was thin before ("ideal weight" but not for entering chemoradiation therapy!)

Barry has his first real radiation treatment tomorrow and is getting amiphostine -- hoping he can handle it -- has serious anti-nausea meds to take beforehand. Chemo (carboplatin) Thursday, first of 6 treatments.

Good luck Michael, hope you can enjoy some of New York and that the weather moderates! This has been one h*** of a summer in the east for heat and humidity...

Best, Gail

There are many things I read on this forum that leave me "scratching my brain". Some of the posts above[along with others about PEGs] to name one. John never got the choice of if or when to have a PEG. It was inserted during his tumor surgery which seems[to me]to be the ideal time. The 1st 3 days after surgery, he was on morphine drips "on demand" and that controlled most of his pain. His memory of those 1st few days is that the catheter and the "boots" on his feet to increase circulation to his legs were the things that bothered him the most. When we went home, the peg was and still is an irritant, but not another surgery to face during the rest of treatment. It's really interesting[mind boggling] how many different approaches are out there.