Oh David, I'm so sorry to hear that. My Rad oncologist and my other ENT intimated that they feel the same way about the relative value of Cisplatin and Carboplatin but as my chemo oncologist said, Carbo doesn't have the depth hand breadth of clinical numbers regarding SCC that Cisplatin does -- Cisplatin has better clinical results and, more importantly, much much more data (according to her research) so she goes with it In healthy patients (well healthy minus the cancer) to maximize the chances -- it's aggressive, but if it works for you, you have a better (on paper) prognosis. I'm glad I let them know about my side effects, though. One thing I'm not shy about is communicating.

Thanks for the feedback!

The Hellion

Kevin also had Cistplatin and now has substantial hearing loss and tinnitus. It does get on his nerves for sure. I had ringing in my ear one day and he said "welcome to my world, 24/7." I felt bad.

I don't know if any of you reading this can appreciate the ironic humor, but I've had pretty noticible tinnitus for decades prior to getting any chemo. And then I got Cisplatin, which upped it about 50%

The irony is that my tinnitus sounds just like being all alone in a forest clearing just before sunset. I can clearly hear crickets, katydids, tree frogs and other evening, forest-settling-down sounds.

For decades, I've used my tinnitus as "white noise" to help me get to sleep!

For those suffering from tinnitus, my observation is that eventually it fades into background noise if you direct your attention elsewhere when it bothers you.

[quote=TheHellion]Oh David, I'm so sorry to hear that. My Rad oncologist and my other ENT intimated that they feel the same way about the relative value of Cisplatin and Carboplatin but as my chemo oncologist said, Carbo doesn't have the depth hand breadth of clinical numbers regarding SCC that Cisplatin does -- Cisplatin has better clinical results and, more importantly, much much more data (according to her research) so she goes with it In healthy patients (well healthy minus the cancer) to maximize the chances -- it's aggressive, but if it works for you, you have a better (on paper) prognosis. I'm glad I let them know about my side effects, though. One thing I'm not shy about is communicating.

Thanks for the feedback!

The Hellion [/quote]
That's news to me. My understand is both are quite effective if you believe they act as radiosynthesisers at all. Some don't necessary feel that concurrent chemo and rads together offer much more than just rads. Just saying, there is lots of various opinions amongst the "experts".

[quote=KP5]Kevin also had Cistplatin and now has substantial hearing loss and tinnitus. It does get on his nerves for sure. I had ringing in my ear one day and he said "welcome to my world, 24/7." I felt bad. [/quote]

I'm sorry for Kevin. The first three days following Cisplat, I had such ring as to make inking impossible. I thought it was part of the chemo hangover along with the nausea, etc, but when I described it to my doc, she kind of framed out and started sending me to audiology appointments. Apparently she doesn't feel that this is a reasonable side effect. Hope she's right!

I hope Kevin's tinnitus fades a bit. I did find it beyond distracting -- I couldn't concentrate for the better part of that week! I do know they can retrain him to better be able to ignore it so maybe he can talk to an audiologist?

The Hellion

[quote=Bart]I don't know if any of you reading this can appreciate the ironic humor, but I've had pretty noticible tinnitus for decades prior to getting any chemo. And then I got Cisplatin, which upped it about 50%

The irony is that my tinnitus sounds just like being all alone in a forest clearing just before sunset. I can clearly hear crickets, katydids, tree frogs and other evening, forest-settling-down sounds.

For decades, I've used my tinnitus as "white noise" to help me get to sleep!

Wow - you are just bad ass, man. That tinnitus is one thing I couldn't seem to deal with. It kind of made my head spin at its worst and I thought it was e hardest part of post Cisplatin. I really felt, I addiction to nauseated all the time, like my head was full of pea soup and just reeling ex whole time!n that you can treat it so easily is impressive! I Bo before you -- you really can make lemonade from lemon sludge!

The Hellion

For those suffering from tinnitus, my observation is that eventually it fades into background noise if you direct your attention elsewhere when it bothers you. [/quote]

[quote=donfoo][quote=TheHellion]Oh David, I'm so sorry to hear that. My Rad oncologist and my other ENT intimated that they feel the same way about the relative value of Cisplatin and Carboplatin but as my chemo oncologist said, Carbo doesn't have the depth hand breadth of clinical numbers regarding SCC that Cisplatin does -- Cisplatin has better clinical results and, more importantly, much much more data (according to her research) so she goes with it In healthy patients (well healthy minus the cancer) to maximize the chances -- it's aggressive, but if it works for you, you have a better (on paper) prognosis. I'm glad I let them know about my side effects, though. One thing I'm not shy about is communicating.

Thanks for the feedback!

The Hellion [/quote]
That's news to me. My understand is both are quite effective if you believe they act as radiosynthesisers at all. Some don't necessary feel that concurrent chemo and rads together offer much more than just rads. Just saying, there is lots of various opinions amongst the "experts". [/quote]

Oh I agree -- I don't think there are any final answers. What I describe is what my chemo oncologist believes and is telling me.. Far as we were able to research, Carbo has a great record too, just not as much clinical data, and maybe, just maybe, comes in a little under Cisplat, although that may appear that way because of the lower clinical numbers for SCC.

At this point, I'm comfortable with the new cocktail and to take their advice, largely because there are no definitives, but neither both seem to be applied and are considers effective.

The Hellion

I too had tinnitus for 20 years, way before cancer, and was worsened from treatment, as did my hearing, but I never went for any tests since I'm too busy with other matters. Anyway, I use a sleep machine, "sleep bug" on ipad apps, as Bart describes as "white noise" to block out the cricket sounds. Bedsides the sleep machine, a fan or air conditioner works well too. The noise is not bad in the day with all the other noises, distractions, but is more heard in the night when it's quiet. I'm kind of used to it.

Kevin works on the Artic Slope in Alaska. He is a mechanic and they are strictly monitored by OSHA. His hearing test after treatment had a very significant change so they sent him to an audiologist right away. He verified it was from the chemo, not work related, which took the pressure off his work and satisfied OSHA. He is at a point where hearing aides would help, but has heard they are so annoying he doesn't want to try them yet. Although last time he was home I found myself repeating things, often, so.....
It is a bummer, but he is alive and years out now so we'll take it. He also had Taxotere and 5fu along with the Cistplatin. This was prior to rads and with the rads he had Erbitux.

As Paul said, eventually it fades somewhat and you just naturally tune it out most of the time. With me, I have to stop and think about it, but when I do, it's always there.

To further what Paul said, you can get recordings of all sorts of nature-sounds. I like rain and so does my wife, so every night my computer plays rain-sounds when I'm/we're ready to crash (she's more of a night-owl and sometimes stays up late watching the tube in the front room.)