Hi Michael,

Was thinking about you as I was driving back from Saratoga and hoping everything was going well for you. I don't like the sound of 'this thing' in your throat nor do I like the drs answer. I think I would have pushed him for specifics, unless you really don't want to know. I forget, did they completely remove your tonsils when you had the surgery or just the tumor?

I can sympathize with you over the pain from the gas. While I never had a Peg, I had a tubal years ago and the hospital brought me a huge dish of pasta right after I got out of recovery which I wolfed down since I hadn't eaten for more than 24 hours. An hour later I was in so much pain I thought I was having a heart attack. Lasted for about 4 hours until I got up to go to the bathroom, got dizzy, made it to the bathroom with nurses help and then promptly passed out. That cleared the stomach and intestines and no more pain. No thanks, never again.

Take care,
Eileen

Boy Michael, I am sorry that you went through all that -- the tube has been pretty smooth sailing for Barry except for about 5 seconds ago when our puppy managed to jump up and hit him *right* on the incision area with her little hard paw! He went off hunched over like Quasimodo, saying weakly, "I don't want to play with you any more right now...."

He had his first chemo today -- I will post more on our "in treatment" site (new topic we're starting today as he is no longer "about to start...")

Regarding your feeling that there may be "something there" -- we asked our medical onc about the rationale for not removing ("debulking") some of Barry's base of tongue tumor before the chemoradiation -- it is surficial, that is, it has not invaded into the tongue muscle -- and she said about what your oncologist said, the radiation/chemo treatment plan is designed to take care of all the cancer, that further surgery would not give any better result.

Gail

When does your radiation tx start? I had a biopsy done on the back of my tonge and i swear he took half of the back of my tounge off by the feel of it but a week or so after that i could feel something there too and was told it was swelling a lil from healing.But when i started tx it was very profound till almost 2 months past my tx stop date from the tissue scaring and just from the destruction on the site from radiation. good news is that now i feel nothing there and my next apt. with my ent where i get scoped for the first time is on the 18th of this month.
Good Luck to you on your journy to being cancwer free

Bob Grey

Michael,
Just wanted to say hi and hope the feeling in your throat proves nothing worrisome. John told me he finds himself wondering what each sensation in his throat/tonsil area means. His left tonsillectomy was July 6th. He seems to be settling into the radiation rhythm pretty well now and the chemo effects seem gone for now - there is hope! He also fights dehydration but he's now accepting the Peg tube and beginning to appreciate what it can save him in time and effort. We both jumped though when he belched as I opened the Peg clamp and I got splashed! Hang in there and best of luck. He's being treated in the Cleveland Clinic system at their Moll cancer site on the west side of Cleveland.
Peace,
Janet

Michael,

You need to calm down a bit. This is only Thursday? You just got here! If the Oncologist really believed he saw a reoccurence, he would have told you. I had mild memory problems when I saw him on 6/16 /05 and was in the MRI 2 hours later, the craniotomy followed shortly. Don't forget, I have been with the same guy for nearly 2 years and he is, as you and I have discussed, not afraid to voice his opinion. Good or bad. I don't mean to knock ANYONES Hospital choice, but MSKCC is very near the top of the list on places to treat cancer. As we had emailed, you probably could have stayed closer to home ("The OC"), but you are here ("The Big Apple") and need to place some trust in the choices you have already made.

As a final thought on this particular issue, I would not be so fast to get more surgery. It will halt all further treatments until you heal and you do not want that. I have put off chemo for nearly 2 months to recover from the brain tumor and Stereo-Tactic Surgery, and I have fairly nice dose of Bilateral Lung cancer. You will have ear pain and related surgical issues for quite a while, and although it may some day be the cancer returned, you need to dig in and get this done.

I do not believe in blindly following your doctors order, but you do want to allow some latitude. They have kept me going very well for over 3 years and my OC has traveled my entire body.

And, since I have decided to voice my opinions as I see fit, we avoid using the names of medical personnel here and I fail to see the need for inserting what may be the first 2 letters of the name. Do you?


Try to calm down! Maybe I'll look you up on Tuesday, I'm there early.

Glenn

Michael,
I totally agree with Glenn.

I didn't have a clean MRI for almost 1 1/2 years. There was always some ROI (region of interest) that the radiologist was dutifully flagging. All of them turned out to be nothing. The radiation and the chemo will mop up what's left. It's inevitable that you will have scar tissue (and you will have even more from the radiation). They don't like the "feel" of it and watch it closely but it DOESN'T mean you are having a recurrence. We can understand your fear though - we have all been there. Take a deep breath and enjoy your pre-radiation time while you can.

Hey ALL!

Glenn, I used "Pf" to honor the rules, but let my friend's and family know the particular Dr since I've had so many, and they frequent the board for updates and support.

I have GOOD NEWS !!!

I saw the ENT on Friday (Dr Sh...)

He is very calming and professional, while also showing compassion.

His team inspected the site and dismissed it as scar tissue forming.

He said: "I see nothing on visual or tactile examination to indicate it is anything but normal tissue".

So, I'll take that as good news, and have been continuing as planned anyway.

Friday I also had my "SETUP" which seemed to drag on for hours, but only lasted about 1:15.

Again!!! My HEAD was killing me half way through, and we had to stop twice due to nausea.

I am practicing with some topical treatments (Eucalyptus, Menthal, etc) to see what can keep my scalp cool during the 20 to 30 mins burn time each day.

I haven't heard anyone else every mention this as an issue, so I'm sure I'm just being a big baby, even the tech's seem surprised that I complained about it.

Basically, my head is so big that they needed to take the pad out from under the back of my skull when they did the simulation, mask, etc.

My head rests on the bare block of table and starts to feel like it's ON FIRE after 10 mins.

Anwyay, I think I'll get used to it too.

Even if I don't, I'm sure it's not the worst of my problems

As far as the PEG, it's fine.

I'm keeping it clean, and flushing it as instructed.

Haven't really used it much, but like the idea of having it "just in case".

However, the stomach distress is quite severe.

I had the PEG surgery Monday, and even today (Saturday) I still have spasms that are terrible. They wake me up all night long, and keep me from taking a deep breath.

I spoke to the fellow on call at the hospital today (they really are great here!!).

He said it can take up to 2 weeks to feel better and that it really has to do with the proceedure of filling the stomach with so much air for surgery. (Dilate).

He say's it can collect in cavities and takes a while to all get out.

So, I'll continue to put up with it, but it upsets me that "the last week of normalcy" before chemo/radiation was ruined by the pain, discomfort, naseau and bloating of having the tube.

My hearing tests, and EKG all showed normal, and they finished processing my slides that I brought with me.

So, I think I'm all set.

Any other tips for Cisplatinum? I have it scheduled for 5 HOURS min. each day for two days, at least 3x during rads...

Yes you are being a big baby! The mask will fit tight in the beginning but will loosen up as you lose weight. If you are really uncomfortable however, let them know immediately. Every now and then they would use the wrong head rest or orient the correct one backwards. You must take some responsibility for your comfort level.

Cisplatin is a bitch. Eat first before you have treatment - it's easier on a full stomach. STAY HYDRATED. The stuff will kill your kidneys if you don't drink 2-3 liters of water every day. You will get some ringing in the ears, give the doctor lots of feedback how you are reacting, especially hearing. They will typically infuse you with Zofran to mitigate the nausea. Stay on top of all the meds they give you. Keep in mind that Zofran loses its effectiveness after 3-5 days of continuous use so have other anti-emetics at the ready. I would suggest having compazine suppositories on hand in case you are throwing everything back up.

Cisplatin also does a number on the stomach lining so industrial strength antiacids are a must.

I didn't have a tube so I can't comment except hearing stories like yours makes me even more grateful I didn't get one.

That's a wierd protocol. My Cisplatin protocol was about 4 hours every third week. The infusion itself wasn't any big deal. Bring a walkman or iPod with you. Ask them for a heating pad for your arm - it's makes it a LOT more comfortable.

Burn a good CD for your radiation treatment sessions. It really helps to pass the time.

You had a baseline TSH right?

Michael,

What 20-30 minute burn time? I have had........75 daily radiation treatments in the past 3 years and none were more than a few minutes on the table. The only exception would be the radio surgery, that was 2 X 25 minute treatments in a 1 hour period which targeted 17 spots in a 1 innch area. You DO understand that the treatments are nothing like the simulation. You will feel the cumulitive damage over a period of time, not the rads. And Gary is, as always , correct, the mask will loosen quickly.

Glenn

My first smile face, I didn't know it did that. I may have to head over to the fields!