I think a very important factor to consider with Cisplatin is whether or not they plan on weekly smaller doses vs the 3 larger bags of that poison. I, as in me, wouldn't have near the concerns for the side effects if they propose the weekly regimen.

Another option might be Carboplatin rather than Cisplatin. The former is suppsed to have less side effects. I didn't have chemo so can wigh in on side effects.

Take care,
Eileen

There is more data available on cisplatin since it has been around much longer. I started out with weakly cisplatin and noticed a ringing after just one infusion (a couple of days later). This went away by the time I had the second infusion. My MO told me that this was not possible and that it was just in my head... (no kidding). After the second infusion the ringing returned and we switched to carboplatin. It is less ototoxic etc but it is myelosuppressive and thought to be less effective, hence the much higher dose.
I personally like the idea of a weekly treatment, it makes more sense to keep the drug at a more constant level than just having 2 (or 3) spikes. Also with the weekly treatment you have much more control if you do not tolerate things well.

Markus

Markus,

He was right! It was in your head.

Hi Jenka- I'm 35 was diagnosed at 33 and I had similar medical experience to you. No one thought anything was wrog with me. They kept looking in my ears when I told them my ear ached like hell.They thought I was a hypochondriac and had a bad cold or flu. It took me to the point of crying in the Drs. office from the pain I was in to finally get a referral to an ENT- meanwhile I should have been on painkillers and had gotten a biopsy a this point. It took another three weeks of being in total agony when I got the test results back. It was horrible shock but at least I knew what was wrong.

I am so sorry that you experienced the same thing. I too didn't have risk factors. I think the more we get the word out the less this will happen. My ENT was visibly angry that i had been let go to the point I had. Its a shame.

So congratulations on making it through a VERY rough surgery.
Jenka you are a rock star! So I had skin grafts to build my tongue and chemo and radiation in addition to the glossectomy. The radiation sucked worse than the chemo-- or maybe it was the combo. It wasn't fun but there were only a few weeks were it was really a bummer. It was just more uncomfortable and gross than anything else.I just read a lot of books and watch a lot of TV and movies and slept a lot... I'm so sorry you have to do it. The cisplatin made me feel a little funny- but they pump you up with tons of anti-nausea drugs these days. I just felt strange on it and I did have some ear ringing and night sweats-- my legs allso twitched a lot -- but that is all long gone now.. Everybody reacts a little bit differently of course but I thought it was manageable. If you experience any extreme nausea the chemo doc will infuse you with fluids to get your electrolites back in line...They did that for me at the end when I had some bad nausea. It was only a few times and just at the every end of the treatments

From my understanding the chemo sensitizes any stray chemo cells so that the radiation can zap them. They will throw the book at you because you are young and they want to make sure it is gone for good. You don't want to have to think or worry about about a recurrance because getting rid of it a 2nd time is a lot more complicated- especially with this kind of cancer.


Hang in there girlie! This will be over soon and you can get to the business of healing and rehablitating and moving on.

Thinking of you! I know how much this is just not fun


KATE

Jenka:
Remember everyone is differant on how they respond and react to treatments. It is always best to prepared for the worst and expect the best. I was all set and prepared to be minimally functional for the entire treatments period - 7-9 weeks. I had 35 Rads and 3 Cisplatin (as David mentioned, they tend to break these up now). I drove myself to almost all treatments (140 miles round trip) continued to work for most of the time. The first 3 weeks I water skied on the weekends, went to football games, etc. Chemo did not really bother me too much but again some people have a harder time. I cannot help you make the decision on whether Chemo is for you or not. But this forum will help you ask the right questions and be prepared to make an informed decision.

Although my staging was a bit more severe than yours, all the Drs agreed to do both Chemo and Rads but again everyone is differant.

Hearing loss - They told me the risk before i started Chemo, did hearing test before I started and after each Cisplatin. I did lose some hearing but I felt it was a trade off worth risking versus the other alternative. I do not notice any hearing loss and my wife says I hear better than she does. Once in while I will have some ringing....collateral damage that I can live with. Good luck in your fight.

I have hissing in ears and high-frequency loss and didn't even have the chemo... Were I you, I'd be inclined to take the chemo because, even with side effects, because you want to do the best job possible in killing the stuf. From what I am reading here, it's possible to choose your chemo, including how you receive it, for least side effects.