Hey, Trev,

My husband is several days past his 2nd cisplatin/5fu/taxotere combo and has not had any tinnitus or extreme nausea. He did get nausea and mouth sores after the first round but then he got on a fentanyl pain patch, a couple of things for nausea including lorazapam, and meds for thrush and mouth sores. The second round seems to actually be easier than the first round. Another thing we have really focused on this round is hydration. He has been drinking as much water as he can and I have been giving him extra in his peg. I am very appreciative that folks on this board warned people to watch out for ear ringing, etc. as we might have viewed some side effects as transient.

Sophie

Trev it sounds like you did ok w/ round 1. I wish you the best of luck. Just remember everybody is different and tolerates medication differently. Be positive, you can overcome this disease!!!! Im due to start my treatments on monday w/ cisplatin.

Also a side effect----the cisplatin actually ENHANCED my taste. Did this happen to anyone else? After my first round, for 2-3 weeks everything tasted SO good I couldn't believe it. Then the tastebuds died, yet I got some slight taste back for several days after the two last treatments.

Just another "war story" and another medical opinion to add to the mix- When John went to his first chemo appt interview,[after two surgeries and radiation txs.] he was asked about current physical conditions that should be noted: They were #1. palsey in his hands that had increased in intensity over the past several years and #2. loss of hearing [age related or being around loud construction equipment ?] that had become more noticeable in the past 2 years. His Chemo Doc said " O.K- we will do Carboplatin rather than Cisplatin-there is not much difference between them in terms of results". So, John got Carboplatin, which did not work, and then Erbitux, which slowed things down and then he died. If I went to bed every night thinking that Cisplatin might have saved him, I would go insane. Amy in the Ozarks

Amy,

Please know that I know that you make tx decisions based on what the docs are saying and your gut. I have done so much research on this cisplatin vs carboplatin thing and still don't have a good answer. I only know that cisplatin in the "preferred" drug at this time. We all know as well, that each case is different and everyone reacts differently to the assaults on their bodies and sometimes all best efforts fail. I have read your posts and know that you and John gave it your all and I am so sorry that it did not work. You are right, you can not second guess your decisions. I wish you the best in your "recovery" from this terrible disease and loss.
Deb

Perhaps the numbers don't mean much unless you are on the bad side of them. As for the Cisplatin, I experienced (and still do) ear ringing after one round. My MO then switched me accordingly. I did not suffer from any degree of hearing loss but do have an increased level of ringing.

Bill D.

Hi, DEb and all- I just reread my post after reading your post, Deb.I don't think my intent was well expressed. Yes, upon occasion during our 2 yr.battle with SCC, I have tormented myself with the "what ifs":[we could have gone to different Docs, we might have had a different protocol of tx, why was JOhn's tx different than xyz's, why was his outcome death?] But those are grieving questions. My intent in the post above was to point out that there are still as many different approaches and opinions to treating this disease as there are Docs.WE, as patients and caregivers, oftentimes beat ourselves up agonizing over what to do before we start this journey, never realizing that the medical profession is on a journey too in regards to this disease. Amy in the Ozarks

A real comparison between cisplatin and carboplatin is needed, the question is will this ever be done (for H&N cancer) and who would pay for it. BTW: In order to get a drug approved a company does not have to prove that it is more efficient than an existing drug... oh no it just has to be better that nothing!
cisplating is an ancient drug that has been discoverend centuries ago. (FDA approved in the 70s). Carboplatin is the "new kid" on the block (FDA approved in the late 80s). Chemically they are very similar.
Many MO are more comfortable with cisplatin because it has been around longer and therefore there is more data. What is interesting is that when they switch you from cisplating to carboplatin they usually also tell you that it is just as effective!!
It would be nice if a real side to side comparison existed. If anyone is aware of a direct comparison.... please post.

Trev if you are worried about side effects you have to consider the amount of drug that is given. In most of the above post that info is missing, but you can assume that in a weekly setting the concentration is much lower than in a 3 week cycle and so are the side effects.

M

Markus, your statement about clinical trials is not correct. It has to show that it is at least as good as the existing standard of care treatment, not better than nothing. Phase three clinical trials (which may be the last step for some drugs even through there are stage 4 trials) indicate how the new drug works in comparison to the existing standard of care drug. Some patients get the standard of care drug, some get the trial drug. If a new trial drug cannot demonstrate that it is at least as good as the standard of care drug, it is dead in the water and will not make it to market. Many times it is dead even if it works no better or worse, but the same as, because long term side effects are unknown. http://www.oralcancerfoundation.org/facts/clinical_trials.htm

Gary --

My math is not faulty -- the *mean* of ototoxicty is 30-33% -- the *range* is much greater and from various published papers ranges from 2% to over 60%. The *mean*-- about 30% -- is medically a VERY significant side-effect and not to ever be considered rare. True, some of these problems eventually reverse but some do not...

Yes, many people take cisplatin with no harm but many do have problems and a lot of them have not been informed up-front of the potential problems or other options. Some are given the drug that (according to other risk factors such as alreay-existing hearing issues or worse, kidney problems) should not take it, either.

Being fore-warned is fore-armed...

Gail