David,
Yes, we leave on Monday for a Tuesday appointment: my "rehearsal". Apt, don't you think for a music teacher?
Those folks at MD Anderson are possibly the best communicators I have ever been around. Not much falls through. If I email the PA for my head and neck doc, I get a response within the hour, even if it is: I'll look at your case file and give you a call in the morning. If you leave a message on his phone, he gets back. I don't have any other large cancer center to compare with but their organization in general is to be envied by the rest of the business entities of the world, medical or not.
Anne

Anne,
definitely get your meds lined up before you need them. You don't want to go to the ER on a weekend or weeknight for pain meds. I would suggest a script for Diflucan as well because you will more than likely get a candiasis (thrush) bloom once the treatment alters the pH in your mouth.

My MO handled all of my meds. At MDA they probably have a pain management team and will set you up. An anti-anxiety med wouldn't hurt a bit either.

IMO the MO is the best choice (and most qualified) for med management. After all body chemistry is what oncology is all about.

My pain meds were:

"Long term": Fentanyl patches, starting with 25 mcg working up to 75 mcg, 72 hour time release. They take 24 hours to reach the full therapeutic level on the first patch.

"Short term": (breakthough): Morphine sulfate, 15mg, as needed.

They will adjust the balance between the long term and short term meds as you go by a process called titration. In other words if you are taking too many short term meds, they will adjust your long term meds upward. They can go as high as 500 mcg with Fentanyl but that is very unlikely for H&N pain. The highest dose I have heard of here was 150 mcg.

If you get Fentanyl be very careful about following the directions for usage to the letter. It is the most powerful pain killer there is and is 100X stronger than Heroin. It is safe as long as used exactly as directed.

"Pink Magic" Swish & spit: For very short term pain relief to allow eating, drinking, procedures, etc., Lidocaine, Morphine & Benedryl

Anti-anxiety - Zanax

Pepcid AC (Famatodine) chemo does a number on the GI system

There were other meds, like antibiotics for infections, steroids for the burns, salves (like Radiacare) for the radiation burns on the skin (never have anything on the skin prior to radiation treatment, only apply it afterwards). At the CCC where I was treated they gave me free samples at the RO nurses station.

http://www.amazon.com/RadiaCare-Gel-Hydrogel-Wound-Dressing/dp/B000BF5JEQ

Narcotics cause serious side effects like constipation so have stool softeners, Preparation H, etc. Have a long talk with your nutritionist about how to avoid constipation IMO it was one of the worst side effects - right up there with mouth sores.

Anti-emetics are a must if getting adjunctive chemo, like Zofran or Emend (?).

Most of these meds can be in liquid form also if you decide on a feeding tube.

STAY HYDRATED!

Gary,
Sounds like great advice. Thanks.
Anne

Anne, Gary is right on the money all the way down. I used Ativan for anxiety and still do, and Percocet/Oxycodone for pain. And I was gobbling those guys like candy during treatment. For the last 2 weeks of same I had a 25 mcg Fentanyl patch to help. I was still in pain, but the Fentanyl I think smoothed things out.

Ditto Diflucan and Zofran. I found the latter didn't really help and it wasn't until I discovered good old Compazine several months after RT ended that I got some relief from 24 hour a day nausea. And I didn't have chemo, so the nausea was caused by the radiation alone. I hadn't expected that. My doc also put me on Prilosec right off the bat as she anticipated gastric issues, and she was right.

The constipation issue is a real bummer. (sorry.... couldn't resist) Something to be taken very seriously where long term opiate use is involved.

I may have mentioned in an earlier post that the best stuff I found for my skin when the burns got bad near the end was Silver Sulfadiazine cream. It's another old-line med, like Compazine, and it's great. You'll also probably get a topical like Miaderm for everyday use.

It's great that we have all these wonderful chemicals to help us out. They really do!

Best.
d2

Thanks David,
I forgot to mention Ativan - I took that also but mainly as an anti nausea med and also Compazine suppositories when I was throwing everything else up before it could take effect. The doctor also recommended placing an Ativan in the suppository as well.

I also took Vicodin until I discovered that the acetomeniphen in it is a liver killer (I also have Hep C - not discovered until my blood tests at the CCC - oh happy day!). UCSFCCC, protocol, is for all H&N patients to be tested for hepatitus antibodies.

I forgot to mention 'Desonide" cream for itching. NEVER scratch the irradiated skin area during or immediately after Tx.

I also had occasional bouts with chronic hiccups that really sucked. You'll just have to take that as it comes (if it does). Strangely, they would stop while I was eating then immediately resume afterwards.

Be aware that I didn't use a PEG so that complicated many things during and post Tx.

You'll also want a "cold humidifier". Vortex makes the one that I used (and still use).

Many have also recommened "Puffs" facial tissues as they hold together better than other brands. You'll need them for hacking up the stringy mucous that occurs later on in Tx.

You already know about dental trays - I also use a flouride foam, pH neutral, Oral B .9% - it is presciption so you'll want to have your dentist order some.

I started on the patch about 3-4 weeks into Tx and stayed on it until about 3 weeks post Tx. I was weaned off over a month time period to minimize withdrawal.

The radiation fried my neck muscles, so today I take Valium and an occasional Codiene for the pain and/or spasms, as needed. It's not all of the time.

Your pain threshold should never exceed a "3" - always use the number system when describing your pain levels to the clinicians.

Your immune system will crash so make sure that your environment is as clean and disinfected as possible, keep waterless hand cleaner with you, wear gloves when touching anything the public touches, ATM keypads, gas pumps, door knobs, shopping carts, etc. and never get within 25" of a sick person.

Hi Anne,

I've been trying to get here since we last spoke on the phone. As I told you, you are getting the best advice possible from the most knowlegable and caring people I know.

Good luck next week. Seems like you got your start date moved up from the 14th. Is that right?

Jerry,
I have had several appointments change, but it is set that Jan 11 I have my appointment with the dentist there to make something for my tongue, and then I have the simulation. Then several other appointments during the week. Not sure when the RT starts, as it is not marked. But we are moving into the apartment Jan 10, my husband is flying back after the next weekend, then flying to Houston again the following Friday. I think I feel better about things then when we talked.

I had not cried this entire time, and spent two days crying at the slightest provocation. I heard from people I had not communicated with in years, like my best friend from high school; I don't count that one a slight provocation. It was "a large good thing". Mostly I cannot believe so many individuals care as much as they shown me, and it is overwhelming. I can never fully express to them what it means to me.

I have to go back to my classroom this morning to make some additional recordings for my sub. Then I can rest knowing I've done the best I can getting my classes ready. Tonight we have a big dinner in a fairly elegant restaurant (for Kansas) and our daughter and my brother will be there along with my husband's staff. The staff did not get our usual holiday dining out experience this year, so we decided this weekend would be good for it, and I think it will be.

Sorry this is sooo long. Thanks for your tremendous help.
Anne

Anne, there's no such thing as "sooo long". We're all here to listen and to help, as others have done for us and you will surely do for others once you've made your recovery.

The dinner sounded great, what a nice event for everyone. I was also so gratified to read of the old friends coming out of the woodwork. They must be good friends indeed to offer to help at this time of greatest need. I hope you'll lean on them freely.

We're here, as the saying goes, 24/7.

All the best.
David 2

Anne,

Never too long, as David said.

Please keep me posted, one way or another.

You are in my thoughts and prayers all the time.

It is typical for RT to start within days of the simulation, if not the very next day. Scheduling and machine down time sometimes affect the schedules in RO. You will be amazed at how many people get treated on these things. UCSFCCC has 4 LINACS and 2 shifts. If one goes down, their schedule is toast. It's not uncommon, also, to have delays during treatment while the machines are being fixed. The machine I was being treated on broke down at least 3 times during my treatment. I was grateful for the time off but I also wanted to get done in a timely manner. I used to service and install systems in LINACs and I can tell you that they are a 9 1/2 ton, piece of precision mechanical and electronics, accurate to 1 mm.

Always be on time or a little early for your RT appointments. The rooms are kept cold also so ask for blankets and extra pillows as needed. The treatment "couches" are hard. Bring your own music with you. Most treatment rooms have boom boxes or stereos. I slept through many of my treatments.

Ask your doctor for a handicapped placard (or to sign the DMV paperwork) so you don't have so far too walk once you're in treatment - you'll need it.