OK,

Chemo 2 today and another treatment change. Given my side effects to Cisplatin (primarily severe Tinnitus which has faded but still comes and goes in severity), my chemo oncologist has determined that I am one if the not small percentage (I think I heard an estimate of 25%) of people that are incompatible with Cisplatin. We talked about it a long time, and she simply feels that the level of long-term, probably permanent side effect render that drug off the list. For my part, I think I can take the pain, but at the same time, I know that severe Tinnitus has driven real people really mad, even being attributed to severe self harm and suicide.

So...I know I won't commit suicide, but I think my cancer team isn't so sure and wants to play me with kid gloves. So there it is. Hearing loss they feel we could risk, but tinnitus, in this cancer care team's eyes, is too risky.

Please don't interpret the above statement as sarcasm, by the way. My wife and I have done a lot of research, but we are not experts. Before they made this decision, I met with another ENT, two audiologists, my chemo oncologist and I know they all consulted with my radiation oncologist.

What it means is I have been switched from 3 large Cisplatin doses every 3 weeks to weekly smaller doses of Carboplatin and Taxol (or something like that. I don't feel like digging out the paperwork they gave me again for the exact name). They feel better about the side effects and believe it will serve a similar cure prognosis. I asked about Cisplatin and they said they lean that way because it has a better clinical track record, or at least a deeper one, but that this is not unusual, and if a patient is incompatible with Cisplatin, well, then they just are.

What I'm hoping is that this doesn't jeopardize my treatment or my long term cure. I hate that I'm not in the best weapon system. That said, I guess my body isn't built for Cisplatin. Though it hurt like hell, I handled the nausea, general sort of achenes and mind numbing ringing/cotton head. The last symptoms, however, make my team of superbrains uneasy. I've seen I here that I'm not the only one that has received Carbo/tax in exchange, so I'm hopeful. I can say my chemo oncologist had no major concerns about my chance for cure.

So there you have it, turns out I really was too weak for Cisplatin.

On the up side, the treatment went well today. As before, my wife sat with me, held my hand, read her book while I slept, picked up my new srcips and generally made me feel like a very pampered guy today. As always, I'm so grateful for having her in my life!

So, anyone have any opinions? Did I get pushed out of the best because they're being too cautious or did I get moved to a solid alternative because the potential lifelong side effects are simply too dangerous? As I told my chemo oncologist -- I'll take whatever I have to to cure this filth. She assured me this will do the job. She is, like me, convinced that I walk away from this scarred and changed, but cured, so that's nice!!!!!

So far the side effects are better than the last time, so that's good. I have to go every week, though, for 4-6 hours, so that sucks. Although I whine a lot about the pain, etc, I have no intention of letting ANYTHING stand in the way of a full on cure.

I'll add more to this tomorrow - need to get some more sleep.

The Hellion

Last edited by TheHellion; 04-22-2014 02:27 AM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many