Ok, Now you've Done it DANNY BOY!!!!!!

There is no way I can get the thread back on track now that you've posted here!!

I'm just teasing you, and that's dangerous on here, since you can't see me smiling and hugging you while I'm saying these things...

Truth is, I am SO HAPPY To hear from you...I've been lurking in the other rooms trying to find the latest info, and I appreciate your taking the time to weigh in here. We are all rooting for you! I send you warm wishes and lots a positive prayers.

As far as the rest of you...Whew!! I stay off the thread for a few hours, and WHAM-O! You guys post so much great stuff!!

----> Ok, for a quick update: TODAY was my first day of Chemo and Radiation.

I thought of each of you as I was scared, nervous, excited and relieved all at the same time.

Of course, everything went off with out a hitch.

Very compassionate teams here! Very gentle, loving, upbeat and supportive nurses, staff and Dr's.

The fill-in for my regular Med. Oncologist today said some optimistic thoughts, one I liked the most and keep reverberating is:

"There is a very strong chance you are virtually cancer free right now, and what we are doing here is EXTRA EXTRA icing on the cake!!!"

Boy he must know my hot button (took one look at me and he knew that , that hot button of course: FOOD! (especially any kind that involves EXTRA EXTRA ICING! :-)

Anyway, I thought that was nice of him to say.

I discussed with him the meeting I had with a certain chief of scientific research at a certain company making the new drug we are all talking about. I told the new Doc how this person said that I should PUSH HARD for the drug, and that it's my best shot at getting this beast.

The fill-in Dr said they know ALL about it! They were the main site for the studies, and the toxicity to them isn't worth the risk for the particular circumstances. He knows the guy personally and holds him in the VERY highest regard.

I said, well, if I am ever going to use it, I must NOW since it only proves effective when used with radiation and I can only get radiation once...

He said, "Wrong again...We are pioneers in this field too and I can tell you we are experts are re-radiation if it ever comes to that!"

So, I must say, I like his attitude.

I had Chemo starting around 10AM (NY time), and it started actually with 1.5 liters of saline (fluids) an antienmetic(sp?), and a dirruetic (sp?)...then after I measured over 1000 ml in output (urine) they started the actual Cisplatin (I think it was 127 ml, is that right?), Then, that was followed by another bag of saline and I was off to radiation.

Get this, after I walked in to the rad-suite, they escorted me to the elevators and said the Dr want's to see me, handed me my chart and sent me on my way. I finally caught up with her on a different floor, she was in the middle of a simulation for a new patient (esophogeal cancer), and brought me in to a room to examine my throat.

She said she had 'heard' that I had a feeling in my throat and wanted to see it for herself.

You might recall, I posted several days ago that she mentioned it looked weird to her on inspection the first time.

She said: "It looks so much better!...I agree with what Dr. Sh...(the ENT I saw on Weds)..said. In fact it looks MUCH BETTER than when I examined it last time.."

Then she gave me and Seth hugs and said not to worry. She pointed us back in the direction for the start of my rads...FIRST DAY!

The ONLY problem with the session was the fact that I had to pee so bad after ALL the fluids, even after I went several times prior to going on the table. But even then, it was minor and went by smooth and quick.

The team, 2 energetic guys (even at 6:30 PM), explain every step of the way what they are doing, how long each step takes and how long I have left in the mask.

They are careful, intelligent and serious, but also compassionate at the same time.

OK, sorry to give so many kudos on here to people most will not ever even know who they are, much less ever meet them, just thought I'd memorialize my thoughts here for when/if in the future I'm cursing them under my breath

I'm tired now, it's amazing how exhausting sitting in a chair for 5 hours can be..! (By my calculations we should be landing in Paris about now!)...Ohh laa laa! I'm off to find a croissant.

Hello Micheal,

I'm sitting here hoping you sail through the rest of your treatment with little or no side effects!!! You bring a freshness to this forum that is welcome. I have never seen so many replies to one posting. Without realizing it you have become a valuable member of this website. Once your part of this international cyber family your in for life. It's a tight band of brothers.

I wish you nothing but the best,

Love Ya, Danny Boy

Way to go Michael! I know what you mean about caring and compassionate, we thought the same when we went up to Sloan. However have found folks at Hopkins to be the same, I guess they all must understand what people are going through and do their best to be supportive.

Barry's finishing his first week of treatment today -- we have been moved to 11:30 on the tomo to avoid rush hour as we drive in from 45 minutes away (well, without traffic...) -- so far no side effects but it is early days of course. However take the advice to eat good food now! -- tonight we are having flounder stuffed with crab and shrimp, plus glazed acorn squash and garlic mashed potatoes. NYC is full of great food -- enjoy while you can. Hopefully neither you nor Barry will have to use that d****d PEG but still, flounder and potato smoothies...? I think not!

Gail

Hang in there!

Gail

Dear Michael,

I probably haven't posted in a year, although I have been reading the discussions here since my Aunt was diagnosed with Stage IV base of the tongue cancer in April of 2003. I had to write though because I do agree with Danny. Your posts have brought life and freshness to the discussions. I think your fighter/warrior attitude is wonderful (!) and I have been following your posts daily. You've made me smile a lot lately. Do know that all of us faithfuls who have been reading this board for years, even though you may not know us because we seldom post-are still rooting for you every step of the way. You are in my thoughts and prayers as I go through my day. I hope you can feel the positive vibes coming your way from Long Island!

For the generous folks who were in contact with my Aunt when she was sad and down from her struggle, my Aunt Rosemary is still cancer free after two years and three months. She had some reconstructive surgery done one week ago to cut many adhesions away from under her new tongue and the front of the floor of her mouth. They added some additional grafted tissue to her original flap and now she's talking almost completely normally. She is doing wonderfully well this time and is feeling pretty darned good already.
We are greatly relieved to say the least.

Keep up the good fight everyone! Every day is a blessing!!

Hugs to all,
Lisa from Long Island

Micahel you so crack me up sometimes. hahahahahaha You know I would love the icing too but alas I cannot swallow the cake. I don't like it without the cake. I am thinking it would not be to good in a blender. Then again I used to have a small cake baking enterprise for several years. Nothing but the finest ingredients in my baking and I do make some killer buttercream icing. Hummmmmmmmmmmmmmmmmmm:D

Glad to see you "off and running" for the victory. My voice is coming back today by the way. If you know any producers that would like a voice that sounds like something from a Star Trek alien let me know. hahahahahaha

Have a good night. Don't overdo and rest, rest, rest when you feel the need to. Since you "did" mention prayer then I will say....

My prayers are with you,
Barb~

I do a mean Darth Vader, or the penguin from toy story two... Oh the wonders of side effects
Sunshine.. love and hugs
Helen

Danny & Gail thanks for the nice words.

Lisa, nice to meet you! Thanks for taking the time out of your schedule to give us all an update!

It sounds like great news!!

You are so close to me in Manhattan...Whew...it's nice the heat wave is over, huh? If you ever make it to the city hit us up...

Barb, the icing is the best part of the cake! And, yes, I can eat it by itself :-)

And prayers are ALWAYS welcome and appreciated!!!

I've been praying much more lately for myself and everyone else here. I guess that's ONE good side effect, a deeper sprituality.

Update from today: Waiting for my puke to hit!

2nd day of poison and burn!

Everything tastes REALLY WEIRD, am sick to my stomach, and feel very "fuzzy". Have been having pretty bad heartburn too....

Already feel like my saliva is changing but I know that is very unlikely on only the 2nd radiation treatment.

At least they haven't killed me -- yet

The chemo was a brutal 6.5 hours today and over 5.5 yesterday.

Had a ton of fluids infused...Am VERY TIRED (already!)...going to try to sleep.

I can't believe I'm having some effects already! The nurse said since I'm having heartburn so soon I should expect it to be pretty bad

Glen, it was great to see you today briefly, you looked really good! (Much better than the first time I met you :-)

Glad the Computer Worm hasn't shut down this site!!!!

Love and Hugs to all...

Hi Michael --

Barry was having heartburn and sour stomach (lots of burping) after the PEG insert and this was exacerbated once he started to get the Ethyol (and probably not helped by the chemo either tho that's just once a week) -- we spoke to the RO and nurse yesterday and they prescribed Reglan (metoclopramide) which stopped it virtually cold. He had no bad stomach or heartburn today -- you take one 15-30 minutes before eating. Worked a lot better than Prevacid. The said they use it a lot in the practise. Ask your doc or nurse about it. Also, try not to let your stomach become empty even if you just nibble some dry saltines. And keep drinking!

So far Barry's taste is OK although he had a bit of a lingering metallic taste this afternoon but it went away after a salt/soda rinse and sucking a sugar-free candy. He thinks it's because he was negligent in drinking water (sipping, really) after getting back from Baltimore. Want to get that amiphostine out of the system so you have to keep drinking...but having swigged 24+ oz. in 90 minutes prior to the injections it is hard to get enthusiasm up for more H20.

He has also found Edy's 100% fruit ice bars to be great -- they come in nice flavours, raspberry, tangerine, lime, wild berry etc.

Do you get cisplatin every day?

Best,
Gail

I know what you're saying about H2o Gail...I had 5 liters or so over the weekend and of course a ton yesterday.

Today, I didn't even want a sip, and barely managed 2 liters all day.

I wrote down the med you mentioned, thank you!

Is Barry taking anything for naseua yet?

I'm going to pop a Compazene just since I'm still feeling queezy and about a 3 on the naseua scale of 1 to 10.

I feel sort of like I'm wasting a good pill since it's not horrific yet, but I just spoke to a Dr and he said I shouldn't be suffering, and not to worry about resistance to the drugs.

I have the same metallic taste, YUK~ But, I can deal with it...I notice if I swish mouth wash it's much better....Who knows what I'll be able to do by week 7 when I have my 3rd and last round of Cisplatin (it's 2 days of chemo, at the start, middle and end of the 8 week radiation cycle).

I was refused Amiphostine, so I didn't know about the H2O with that too, and what is Ethyol?

Sounds like his team is really on top of things and that you two made a great choice.

Thanks for the updates...please keep 'em comming.

Who knows how these things will go Michael. My Onc said I would get a sore throat and have to go on liquids in around 3-4 weeks. I got it in 8 days. As for the heartburn as long as I could swallow them I took a Zantak 150 in the morning and one around 6 in the evening.

Hope you feel better and no I will not sent you a tub of buttercream icing just because you like to eat it without cake. Well maybe after you get well I will. My son could not live without a bowl of chocolate chip cookie dough at least every 3 months. LOL

God bless and give you comfort and strength,
Barb~