Cisplatin (AKA Platinol) is some miserable, rotten, stuff to be sure but it has a good, proven, track record for doing its job and adds an estimated whopping 13% to your 5 year survival rate when used in conjunction with radiation.

The hearing loss issue is fairly rare and the radiation can damage the eustacian tubes for a time and cause the same effect (it causes fluid buildup behind the ear drum - this is also why many complain of ear ache). Make sure that you report any changes in hearing to your oncologist immediately.

I should mention also that since the archive thread was written, some institutions give more frequent but smaller dosages and some seem to tolerate that better.

Here's the latest from the NCCN http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

After your treatment with Cisplatin, keep taking your anti nausea meds daily. The trick with that is they prevent nausea before it becomes a problem. If you are getting Cisplatin every 3 weeks it will be a higher dose. Thats how mine was given. I did ok until about 2 weeks after the first dose. Best of luck to you with your treatments. Before you know it, you will be finished.

That NCCN guideline also resides on the OCF site in the treatments section on this page http://www.oralcancerfoundation.org/treatment/guidelines.htm

We're not sleeping here...we keep things current.

Yes we DO have the most current links but my link was specifically directed to the Cisplatin page so she wouldn't have to search through the hundreds of pages on the NCCN Oncology Practice guidelines site.

Everyone here should read the NCCN Oncology Practice guidelines (in Brians post/OCF link) for whatever OC you have as soon as you are Dx'd and well before treatment planning is started.

It is critical for 2 reasons: 1. Know ALL of your treatment possibilities and 2. Have intelligent questions to ask of your medical team.

The NCCN guidelines are pretty much the "Standard of Care" for cancer diagnosis and treatment (for ALL types of cancer).

There are also sections for stress and adult cancer pain management in the guidelines.

We have many patient advocates here but the bottom line is that YOU have to be your OWN patient advocate. The ultimate choices rest in your hands. Whether you live or die - rest in your hands. It's always been OCF primary mission to equip patients with the knowledge to be their own advocate.

Please - don't play games with your life - GO to a Comprehensive Cancer Center or NCI Cancer Center for diagnosis and treatment.

Gary said:

Please - don't play games with your life - GO to a Comprehensive Cancer Center or NCI Cancer Center for diagnosis and treatment.

I can't agree more. As I've said many times, I went to 5 different cancer docs and were given 5 different Tx alternatives with 5 different "estimated survival chances" ranging from a Chemo doc (treated me for cat scratch fever) to a neck surgeon (ND and nothing else and a 50% chance of surviving) to my ENT ( radical ND, chemo and rad and a 60% chance) to Moffitt (no ND, Chemo and Rad and a 90% chance). Back then I really was a lost sole not knowing what to do, where to turn and scared out of my mind. My wife was pushing me to "stop being a baby and have them (my nodes) cut out" but I kept saying no because of the conflicting opinions. I am so lucky I had great insurance and I kept asking questions and searching the web and found my way to Moffitt. Unfortunately, IMO, many posters that I have met since coming here to this site are not so lucky and end up treated at a less desirable facility. I am convinced I easily could have been one of them and it's scares me to this day. I have done a few radio and TV shows locally and I have pursuaded at least 3 off air that I know of to go to Moffitt. I just wish I could reach many more cancer candidates before they perhaps make an uninformed decision.
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I have a question that needs answered. Is it necessary to habe someone go with you as a driver when you get RadChemo treatments? If so I have to find a driver and fast.

Jim,

In Bill's case, he was very able to drive himself for about 3 weeks but needed me from that point on most of the time due to lightheadedness and just generally feeling lousy. The American Cancer Society has drivers available to help you if you can't find anyone else..lovely volunteers that take you and wait if you have rad treatments or come back if you are having chemo.

I would start now checking into this...you won't need it right away but you will most probably need it at some point.

Good luck, Deb

Jim: Buzz drove his Volvo stationwagon 90 miles round-trip for 28 IMRT and 6 chemo sessions. I think you might be okay to make the trip in the very beginning, but DO have a backup driver, just in case you aren't feeling up to the drive. You also must take into account the traffic situation, i.e. city vs. rural driving. How far must you go for treatment?

Jim,

I drove almost the entire time but then again I am MUCH YOUNGER than you. LOL Anyway, there wer many days that I shouldn't have gotten behind the wheel especially for a 90 mile RT but hey, no one could tell me anything. Not Mr Stubborn. I also was pretty antisocial and really didn't want to be around people looking and feeling the way I did. Sometimes I had to pull off the interstate shoulder and toss and sometimes I would forget what had happened the last mile or so. SCARY to say the least. Don't be to proud to let people help.

We all respond differently to treatment and the meds you are taking factor in as well. My experience here is that the vast majority of people needed drivers, especially from 2-3 weeks into treatment on out. My wife drove me the 60 miles each day to treatment but I also had back-up drivers on tap. ACS reimburses for some of the mileage (I beleive it has a $200 cap - you do have to be at least 60mi from the treatment center, round trip)) as well as providing drivers.