Paul - Just an FYI, OCF is one of several funders of an RTOG clinical trial looking at replacing cisplatin with Erbitux keep radiation the same. This trial was started a long time ago, and should publish results next year. The idea was to use a less toxic chemo and see if the end results would be the same. Our portion of the trial was to pay for 100 (100 clinical centers in the trial) iPads that were custom pre programmed with a questionnaire that patients would fill out once a week. It looks at the obvious things like pain, nausea etc. but we also are looking a general quality of life questions too, that no one has paid much attention to. (Treating the disease and not the patient as usual is the norm too often). So we had a chance to piggy back on the existing RTOG with a new portion - the QOL questionnaire. While some people have referred to this one as something that is looking at "dialing back treatments" it really isn't dialing back the one that has the greatest long term negative impact, radiation.

Thanks Brian. Look forward to seeing the end results with Erbtux vs Cisplatin. I had both, but at different times. For a while, a few years back, I was seeing quite a few mono first lind Erbitux treatments, but not as msny now or maybe it's just my perception.

Thanks for the responses everyone. I really do appreciate your time.
The cancer care center that is helping me does not have an ENT on staff. My initial ENT surgical oncologist did not communicate with the center. So I have dropped that person and will use the guidance of my second opinion ENT surgical oncologist. The second opinion doctor has been more thorough and helpful. Plus the doctor has communicated well with me and the chemo oncologist and the radiation oncologist that I will now be using.
Even after losing a month of comprehensive treatment, the Erbitux has localized the tumors and has even reduced their size slightly. I should be starting IMRT radiation within 2 weeks.
Most likely 6.5 weeks of therapy and I am considering using cisplatin in place of the Erbitux. For all the bad things I have heard about the toxicity of cisplatin the written info seems to say that only about 10% of patients have problems with it. I am sorry that I do not have the source info for that statement.
Take care everyone.
Steve

Steve,

Not sure where you got your Cisplatin statistics but IMO 10% sounds more like the percentage of people that it DOESN'T cause problems with.

There are 2 practiced delivery methods for Cis; 1. I call it the Big 3 Bag Method in which larger does (bags) are given 3 times during rad; one before the first rad; one appx 15 days into the rad Tx and the last on the last day of rad before that rad and 2. smaller doses (bags) given once a week during Rad. The patients that seem to fair better, adverse side effects wise, receive the weekly method. The weekly method also does not seem to have a negative impact on the overall Tx success rate but I know there has not been any study concluding that. My observations come from this site only.

Hi Steve,

I had 6 weekly infusions of Cisplatin. It definitely kicked my butt but the side effects were manageable with drugs. I was fortunate that I didn't suffer many of the listed side effects. Long term, I have neuropthy in my toes. Get a baseline hearing test prior to starting and make sure you report any hearing issues immediately. Tinnitus is a possibility.

Positive thoughts and prayers

"T"

It's probably 100% likely you will have some sort of side effect from any chemo or targeted therapy, like Erbitux. To what extent may be different in everyone, and depends on the chemo, the dosage, rate of infusion, duration of infusions, if combined with another chemo and or radiation, general health, age, and comorbidities. I made a link to a study or paper on weekly Cisplatin vs 3 big bag Cisplatin, a few months back. From what I recall, the weekly seemed to have better overall survival, but higher degree of mucocitis than 3 bag, and less effect on kidney function impairment. I'll have to go back to find it.

In addition to baseline hearing test Mr. T mentioned, have a baseline TSH test for the thyroid, the creatine, GFR, for the kidney function, which they do or should every week before infusions, an eye exam, vision test, and testosterone levels.

I had the "3 big bag" Cisplatin and I guess looking at these post I was pretty lucky. Besides the extreme N&V after the first dose, nausea for a few days after the next 2 doses and the usually taste and lack of appetite problems and hair loss so far so good. As far as I can tell I have no lasting effects yet. I take that back, I get an occasional ringing in my ear, and I mean very occasional, maybe once a week for less than an hour. And I get a tingling in my left shoulder blade sometimes that the docs don't seem to think is connected to any of the treatment but it was never there before.

I can always count on you Paul for technical backup!

It takes so long to gain, and so quick to loose. I can't remember anything anymore. I also have a bad habit of using my email as a filing cabinet, and I have 14,000 messages lol, so I doubt I'll find the link. But it may be in one of my posts, I think lol.

http://www.ro-journal.com/content/pdf/1748-717X-7-215.pdf

Paul,

From my experience it only gets worse.