Hi Everyone,
My father has recently been diagnosed with squamous cell carcinoma of the tonsil, tongue, and two lymph nodes, stage 4a. We are working with a cancer center and will get started soon with agressive radiation/chemo after his gums heal from removing many teeth.
We met with the oncologist this week and they want to use Cisplatin. However, we (we means Dad, Mom and I) have concerns as Dad is a classical musician and he says hearing is a very high priority. The Oncologist didn't give us any other options, Mom and Dad are on their way to CC for PEG tube discussion today and will try to see the doc again to ask about other options. I have noticed Carboplatin on these boards.
Are we being silly?

Sorry to read about your dad. It's great that he has you and his wife in his corner.

I think your question is a good one.

We thought we were making an educated decision at the time we were in discussions about my husband's chemo, but in retrospect if I knew then what I know now, I would have pushed for a different option.

I thought that in this thread (copy link below) of conversation, there is some good information about Cisplatin and Carboplatin.

http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/get_topic/f/6/t/000699.html

Good luck with your decision.

Mariam,
Hi. I am so sorry to hear about your father. His diagnosis sounds similar to my mom's. My mother was given Carboplatin rather than Cisplatin. In all honesty, she reacted as well as we could have wished to the Carboplatin - no hair loss, minimal vomiting. The radiation was a bit harder on her, but got better after she was taken off of the Ethyol injections. The PEG tube literally kept my mother alive. It is well worth it. The same goes for her trache. All I can say is that eventhough we went to the cancer center we had originally been referred to, we also went for consultations, one of which was at Sloan Kettering, and another at NYU. I suggest that you get as many opinions as you feel comfortable. It was amazingly reassuring for us to hear that she was on the right track, and the doctor at Sloan was also the doctor that basically insisted that my mom have a trache put in as soon as possible when treatments started, since, as he put it, you don't want to have to do that in an emergency situation. We have done more with caring for a trache and feeding tube than I ever expected I would have the mental strenght to do, not to mention the stomach to do, so if there is anything you need feel free to reach out to me. Finally, do whatever research you can. It is only through asking as many questions as you can that you can ask the right questions and get the correct answers. There was recently a long string here regarding the use of carboplatin vs. cisplatin and it sounds like that would be a good place for you to start. Best of luck to you and your family, and keep strong. Everyone on these boards is absolutely amazing and will become the best source of knowledge and support you could ever hope for.

Amy

Hi Mariam,
I'm sorry to hear about your father. My dad had a similar diagnosis. (We're also in Illinois. Where are you being treated?) Can you give any more information about his age, health, etc?
We got consultations at Rush, Northwestern and U of C. We decided to with U of C. My dad's treatment protocol called for an "induction chemo" phase which was 8 weeks long and he received carboplatin, taxol and Erbitux. Phase 2, which we're currently in, is 7 weeks and consists of cisplatin (twice), Erbitux (weekly), and daily radiation. He's had one of his two cisplatin treatments and seems to be handling it well. He is a little more nauseous than with the carboplatin, but that may just be due to the cumulative effect of all the drugs. He says he's had a little tinnitus (high pitching ringing), but that it's barely noticable. (Or at least not much different than pre-cancer days.) I've read about several people on here who started with cisplatin (since it's basically the "gold standard"), but were switched to carboplatin if the side effects got too bad. You should ask your doctor if that would be a possibility.
Please feel free to contact me if you think I can help you with anything.

Stephanie

Thank you for your responses. Everything about this has seemed like one rapid decision after another...And more than a few mixed messages. (For instance, Oncologist says "You are a good candidate for cure" then we are whisked to social worker who tells us about hospice.?!")

Stephanie,
We are in the Peoria Area but he will be treated in Iowa City. There is a partnership there between University of Iowa Cancer Center and the Veterans Hospital. (Dad is a vet so they put him up and pay for everything. Radiation etc will be at the University Hospital)
Dad is 72 years old with no health problems (other than Cancer) he even has all of his teeth and has only had one cavity in his life.(They will remove 11 teeth on Monday, all in the back.)
He smoked in the 1950's in the military and a bit socially after but not at all in the last 35 years. He has 1 beer a week. He's Mr Moderation. He still works part time as a music instructor, plays in the symphony etc. He is in no pain or fatigue, just noticed a lump about a month ago on the neck.
They said that the only thing going against him with Cisplatin is his age. However Dad is beginning to feel that the risk of hearing loss, ringing or changes are bordering unacceptable.(especially after reading on this site that the hearing problems can start after the 1st treatment..They want to do chemo 3 times-once every three weeks, and radiation 5 days a week for 7 weeks) Not to mention the kidney stuff.
Hopefully I can get Mom involved with this site as well. Dad is not internet savvy but asks me to research etc.

Mariam,

I'm curious, why are they removing 11 of your dad's teeth?

My husband had Base of Tongue cancer and started out with Cisplatin and Radiation similar to what they are proposing for you Dad. He had to discontinue the Cisplatin after the first dose due to hearing/tinitus issues.

Although, at no time was teeth removal ever brought up. Are you dad's teeth in bad shape?

Hi Mariam

From one musician to another, ask the question.

I had Cisplatin as one of the drugs in my 3 rounds of induction chemo. I do have a slight constant ring in my ears, and I have noticed some very high frequency loss of hearing. I no longer have much of anything above about 10k or so. Before this I had hearing out to about 14k

Yes I am one of the guys that used to complain about old televisions and the old ultra-sonic alarm sensors.

Kevin

No, They say they don't want the risk of the teeth becoming bad after the salivary gland stops working. That once the mouth goes dry they can rot fast and an infection can go down to the bone, also that it is hard to care for teeth while going through the treatments if you get thrush etc. He still has his wisdom teeth and they want to get those out. The dentist didn't say the teeth were bad,they just want to remove them.
We were relieved because they had mentioned removal of all teeth, but now he will have all but 11.

They don't usually remove healthy teeth anymore. The fact that they originally wanted to remove all his teeth sounds like you have run into one of those docs operating under the old protocol. Wisdom teeth going is one thing, but he doesn't have 11 of them. Yes, you need to take meticulous care of your teeth both during and after radiation. If they are as healthy as you indicate, I'd get a second opinion.

Take care,
Eileen