Sorry Deb, I was answering the original question and I don't want to seem to second-guess you -- however I am not making that blanket statement, here's what is written on cisplatin drug effects:

"Another dose-dependent effect of cisplatin is ototoxicity. Again, it is a cumulative and irreversible side effect, that becomes more significant with irradiation therapy. The ototoxicity of cisplatin also appears to be most significant in children who may experience loss of balance along with hearing difficulties due to greater sensitivity to the drug. Initial symptoms include tinnitus (ringing in the ears), or some hearing loss or both. These effects usually decrease when the treatment ends, however, many patients experience irreversible hearing loss in the high frequency range (>4kHz). Therefore, audiograms are recommended every two or three cycles to monitor the condition of the inner ear."

Because my husband had existing high-end hearing loss (>4,000Hz) from ear infections as a child, neither his MO, RO or ENT wanted him to take cisplatin. They all said that their experience found carboplatin to do as well as cis- as a "radiosensitizer" which is what it is -- it is not the primary treatment, but an adjunct and enhancer of the primary treatment, the radiation.

As my husband said, why risk a permanent quality-of-life issue whe there is a suitable option?

I should add that Hopkins gave him a audiology test before and after treatment and there were no changes.

Gail

Gail, once again, you did not understand what I was saying. The blanket statement referenced "dealing" with hearing loss issues. I am fully aware of the side effects (read my posts...I did a lot of research.) Yes, hearing loss is a quality of life issue...we have been dealing with it for ten years now...but we know that one can compensate with it in many ways. My husband also lost sight in his left eye 30 years ago in an industrial accident (so no left eye, no right ear) but he has passed his FAA exams (private pilot) with flying (no pun intended) colors...examiner was very complimentary of his techniques. So, in other words...he has dealt with his disabilities like a lot of other people deal with theirs...and go on with their lives.

We did have the audiometrics done prior to treatment so we have a baseline. We don't feel that we have come to our treatment decision in an irresponsible manner and we are staying positive that the outcome is good.

Happy that your hubby is doing well and that his treatment at Johns Hopkins was seemingly successful. I do sense that you have a little bias that treatment decisions made anywhere else are inferior. I hope that is not the case...not all of us can arrange for treatment at J H.

Sorry, if I sound a little short, but I want to make sure that you and other readers understand what I wrote. I was not arguing the risks..we are a intelligent, well educated, well informed couple that decided to take the most aggressive approach to this cancer possible. If we have problems along the way, we will have do as we always have...deal with them.

Deb

I think that this is getting a bit out of hand.
This thread stared with emmylou1951 asking about cisplatin ve carboplatin. Looking at the genesis of this, this is what Gail responded to.
Most of us only have a personal experience to relate which makes for a poor statistic. This also means that they can only relate their experience of the particular place they were treated.... whether that is at Hopkins or elsewhere. That much should be obvious. The function of this board is, in my opinion, also to get into contact with people with different views and experiences. You learn from what is useful and leave the rest.
Deb, it is good that you are happy with your treatment plan. This is as it should be. Realize however that plans can change. You are just at the beginning of the treatment. Quite a few of us have started out on cisplatin and then had to change.... regardless of our education, research abilities or plans.
In MO speak worring about side effect also means to switch to carboplatin IF there are side effects. If not the point is obvioulsy moot, maybe you are lucky, many of us were not. The ringing I had after just two low concentration cisplating infusions was quite bad and severely impacted conversations. I sincerely hope that this works out for you. Not all people are prepared to put up with potential and later on REAL side effects the same way as you.
It is always easier to avoid damage, if possible, than try to fix or compensate for it later.

I wish you the Best for your treatment!

Markus

Markus,

I don't feel that anything is getting "out of hand." I think all viewpoints are needed...I would have appreciated a thread like this when we were trying to make our decision. I also don't expect that everyone would make the same decision...I just wanted to clarify our position.

I think we all feel that "it is easier to avoid damage, if possible, than to try to fix or compensate for it later." But in response to a life or death decision, easier isn't always better.

Please note that we did not go against our physicians recommendations to do this course of treatment; it was presented as an option and it was a joint decision. We are prepared to make a change if any noticable hearing problems arise as they did in your case. Hopefully we will have some warning. So far, everything is OK.

Thank you for your viewpoint and good luck in your recovery.

Deb

I have been following this thread from the beginning.
I wasn't given a choice, mine is carbo regimen (palliative) but a week ago, I had
'ringing/throbbing' in my left ear.

I looked up side effects of carb and nowhere was it mentioned, although I had read about hearing problems being a side-effect of cisplatin on this site.

Fortunately, the 'symptoms' now seem to have subsided, but I still don't feel I hear as well as I did.

I also had an eye-exam today as my eyesight has definitely deteriotated--both my long and short vision. I currently have tests every 4 months anyway and RX has stayed the same for a good number of years, so am wondering if this change is a result of the cancer, chemo, or just 'natural progression due to age (58)' Any thoughts anyone??

Brenda