Hello All, I did my last work up before starting my rad on Monday 30 IMRT treatments. Some questions I had for the rad on'gist based on what i've read on this board.
1) How much water intake per day should I be taking during the rad treatments?

His Answer: I don't know????


2) I'm feeling kind of down and have trouble sleeping at night. Is there anything you can prescribe for me to help? He ended up giving me a script for 7 sleeping pills. Ended up prescribing 30 paroxetine and said it usually takes 30 days before you feel the effects of them!!!

Answer: Are you thinking of sucide? Nice of you to relize how you are feeling. I normally don't prescribe that kind of meds, you might want to see your surgeon and ask him???

3)Do you prescribe anything to try and keep my salivary glands somewhat functioning. I can give you some samples of salagen but they don't work for many people.

4) As I proceed along in the radiation treatment
what kind of pain meds can I receive if the pain becomes bad.

Answer: We can prescribe tylenol w/codine #3.

From reading all the posts for the last two months
that doesn't seem to cut it based on what i've heard. Any comments?? Dan

P.S. I'm not looking for a buzz, I just want to minimize any pain during the latter part of the rad.

I love it! You are fighting a life or death battle, willing to put up with a hell of a lot of pain caused by radiation, and he wants to know if you are suicidal?

I am speechless. Please print this post and give it to the poor SOB and see if it has any impact!

Unless this RAD dr is the best you have, I'd be looking for another.

I agree with Mark -that's a pretty creepy response in regards to the pain meds. US doctors are notorius for undermedicating but part of that is because of the labeling put out by the FDA about addiction. I wouldn't worry about getting a buzz - I didn't and I was taking morphine and Vicodin tablets in addition to the Duragesic patch.

My doctor gave me Dalmane for sleeping and he always prescibes a full jar (100 tabs) of anything I ask him for (wassup with this 7 pill stuff?). I figured out what meds I needed and asked the doctor to write the scripts and he did. I used the book I refered to in my 6 month anniversay post to figure all of that out. You'll feel Dalmane in about 30 minutes (NOT 30 days!).

It's a little early to start the depression/suicide rap -they usually ask that post Tx.


Personally, I used the oncologist as the primary care doctor and he coordinated all of my meds. He(she) will have a better understanding of the whole picture and the contraindications based on your chemo. The radiation onc's tend to be more conservative with the pain meds. Mine was always bitching at me about the pain meds - she thought I was overmedicated -yeah right! Her brilliant solution for pain was to use a topical spray that was unbeliveably painful and burned like hell for about a minute or so until the lidocaine kicked in - oh happy day! Needless to say we only tried that approach ONCE.

I probably would have enjoyed a buzz but as fate will have it, when you are really in pain, it just takes the edge off - no buzz. It's more like maintenance.

Most patient guidelines recommend 2-3 liters of water a day that would be 4-6 12 oz bottles of water.

Salagen is one option and it doesn't work for all people and so is amofostine, which can be as tough as chemo. But if you're getting IMRT you probably don't need it.

Daniel, sounds like this doc is on the conservative side with the pain meds. Between insurance companies, the fda, and what ever other government body gets involved, some times there's legal issues (depending on state I think) about dispensing some medications. My ex-wife had severe back pain, and the doc had to file forms with the state to prescribe vicodin apparently. Thinks a lot of it depends if you are in-patient or out patient.

Don't exactly remember what you're having radiated, but if it's just neck area and maybe some throat, hopefully won't be terribly bad. That's what I had done last time, and it wasn't all that terribly bad, just did Panadol and it did the trick. However, first time around was also a big chunk of tongue, and things got quite a bit more painful, especially in the last week.

Bob

Hi Bob,
We can agree to disagree. I had the exact same cancer as Dan and it WAS "terribly bad" painful. I had radiation burns on both sides of my tongue so bad I couldn't talk for weeks (and this was with IMRT). I had to use morphine for breakthrough pain just to swallow water! The throat is about 16 sq. inches. You can't dump 5-7000 rads into it without some difficulties.

Since opioids are federally controlled narcotic, I believe that state regulations are preempted by federal law. The doctors are accountable for what they prescribe and must fill out record forms accordingly with their state ID number for tracking purposes so that their prescription powers are not abused. Hospices have no trouble getting adequate pain management for in home care so I don't believe it makes any difference whether you are in or out patient (unless you're getting IV pain management of course).

Any regulation to withhold adequate pain management from patients would be inhumane and barbaric.

From MD Andersons Pain Management web site:

http://www.mdanderson.org/topics/paincontrol/

"Doctors also know what basic science research is proving: pain is very real and ignoring it can interfere with healing. It is no longer advisable for a patient to take as little medicine as possible and to try to get off the

Thanks for all the input, I feel just like all of you. Very disappointed in his response to my questions. For him to not know how much water intake floored me. I don't have a on'gist as i'm not receiving chemo. My reguler surgeon is real consertive on the meds also.

I also asked him about my teeth and he says the rad will be mostly behind my teeth in the throat area. I did have trays made and am getting a water-pik and biotene mouthwash. It's not very comferting not having alot of confidence in him though!! I'll do my best to survuve the rad with minimal side effects but If I'm in pain I will scream like hell. Dan

Your last sentence is the wrong answer. You won't be screaming - you'll be signing! Pain needs to be managed BEFORE it gets out of control. Find another doctor to take care of your pain management, maybe a regular internist would do or if you are at a comprehenive cancer center then get a referal to the pain management specialist. I had all of my meds lined up long before I actually needed them. What if the pain really hits you on a weekend or at night-do you really want to sit around in emergency all day (or night)?


This discussion gives me gratitude that I had a liberal and informed doctor who took pain management seriously and with a modern progressive viewpoint.

You may wish to go to the NCCN pain management guidelines below and print them out for your doctor.

http://www.nccn.org/physician_gls/f_guidelines.html

If you have might trouble swollowing or have a peg, ask if the pain meds can be crushed.

some can. come can't. i wasted some $$ on meds that couldn't...now i know to ask first.

cu,
larryb

Talking about pain management, I think I am much luckier than some of you here. I did not suffer from great pain throughout or after radiation since my oncologist prescribed pain meds right from the beginning. When I could swallow, I just took panadol tablets and in the middle when swallowing was difficult, I took morphine and panadol in syrup form. And there were two types of gargle for mouthwashing before meals to make me feel better so that I could take the food more easily. The real pain I had was during the last few radiation treatments when my left neck was burnt and bruised and still they had to tighten my neck up with the mask on for about 10 minutes. I couldn't scream because I lost my voice already. I shed tears in silence.
Dan, don't get indulged in the worst scenario that you heard from others. Things may not be as bad as you imagine!

Karen stage 4 tonsil cancer diagnosed in 9/01.

Dear Dan,

You should not have to suffer through the RAD at all. When Dennis was going through it, the doctors were very worried about the pain control.

His radiologist made it very clear upfront. "I'm only given one chance of curing you......and I'm not about to let you suffer". We were always assured that he would get the relief that he might need. If your body is fighting pain, it can't use the energy it needs to heal.

I can't believe that the doctors are not taking your concerns more seriously at this point.

Please...see if there is another doctor that might be more educated in this disease. I know it sounds axhaustive. We've all felt it. But, it will be worth it in the long run to know that you researched every avenue available.


Mandi

Hang in there babe.

Dan it is funny (strange) not haha that the Dr asked about suicide, we had a similar experience.
My husband Dan being a joker wore a "Cancer Sucks"
Baseball Cap to one of his treatments......they sent him to the therapist/social worker, asking him about depression etc etc. Keep in mind he had gone every day for weeks, but the day he wears this cap he is talking the the shrink and they want to prescribe anti depression meds.

Some of these doctors are nuts!

I apologise in advance because this post it isn't directly related to Dan's post, but after Sherrie Lynns post I remembered how I got my first CAT scan post treatment:

About 6-8 months after radiation I felt a strange sensation while breathing. Over several days I got more and more worried until I finally called for a rush dr's appointment. My doc was booked for 2 weeks and I couldn't wait (right?) so I got an appointment that day with a nurse-practitioner.

While I am waiting in the exam room I see a poster for anxiety symptoms (one of which is breathing sensations and tightness in the chest) SO after her exam where she finds nothing, I mentioned the poster on the wall. She says "would you like me to make an appointment for you to see a psyciatrist?" To which I replied "If they can tell me the cancer isn't in my lungs then go for it!" She excused herself from the room presumeably to consult with my regular Doc (between patients) and came back several minutes later with an appointment for a CAT scan.

The CAT scan was normal so apparently I should have seen the shrink! :p

Hi Mark, Dan,
They gave me the little pep talk the day I wore a Navy Seals t-shirt saying "That which does not kill you only makes you stronger" (and my Garand Collectors Association ballcap -with a rife on the front) and the doctor asked me if I owned a gun (under the pretense he had an interest in shooting) (I collect WWII weapons and have a sizeable arsenal).

I had a bad reaction to the Zoloft - almost immediately I had flu like symptoms and so I quit that. Then they gave me Paxil and I never took any - figured I'd had enough drugs and medications. I guess they're not for everybody. A little depression is normal at times like this.

Disclaimer: This was worked for me -some out there suffer from severe depression and really need the meds.

They're (the HMO) pretty cool about scans -they give me anything I ask for, blood tests too. I have had a full liver panel, PCR/DNA test for Hep C, Cholesteral test, etc. Unfortunately they don't have PET/CT yet.

The main anxiety I have these days is paying the bills...

Dan, I just wanted to wish you lots of good luck on your journey through radiation...you have received some wonderful advice from your buddies here..they will keep you on track. question your Doctor and make sure he see a "real person" before him..sounds like he`s coasting!
Marica

Dan......You are your own best advocate in all of this, remember that, Dan. I found it especially important to have a decent connection with my doctors because of the serverity of the diagnoses. We are fighting for our lives here, Dan, this is tough stuff to not only grasp, but get a hold of. You need to be open, honest and up front with questions to your medical team, and you deserve open, honest and direct answers to ANY and ALL questions you or your loved ones may have. You are the consumer in all of this; you pay the Doctor's salary, not the other way around. And remember, the squeaky wheel always gets the oil. I caution you to not let the lines of open communication dissolve and if you see this occuring, it might be wise to switch doctors early in the game. Sending good, positive thoughts your way. Sincerely, Donna