I know that these wouldn't be medical opinions. However, I love all of your opinions. I see that a lot of people get Cisplatin. Can you all share your experiences? Hair loss? Nausea?
I don't even know if my brother will have to do it. But prior to his surgery one NCCC recommended Cisplatin and the other Erbitux. Too many decisions.
Greatly appreciated.

Patients on cisplatin normally will not lose their hair, not sure about with Erbitux (or if its mixed with another type of chemo). Radiation will cause a small spot (about the size of a quarter) of hair loss somewhere on the back of the head. Its not usually noticeable and is only temporary.

I think cisplatin is the most effective type of chemo for OC. Try to opt for weekly smaller doses instead of the 3 'big bag' method of whichever your brother gets. Smaller doses are much easier to tolerate than the larger ones. Many of us with cisplatin only received the first 2 'big bag' doses as we were too sick for the third round of chemo.

As with anything these things come with warnings. No matter which chemo is used make sure to take in extra water to flush it out of the kidneys. This is especially important with cisplatin. Hearing loss can also occur. From what Ive seen discussed, with Erbitux, the more of a rash the patient gets the better the chemo is working. Friend who have had this type tell me it itches like crazy.

Remember this all is only temporary. Rashes heal and hair grows back. If experiencing hearing loss and kidney damage, those are permanent. But also as I stated earlier, less likely with the smaller weekly doses.

Cisplatin redefined the word nausea for 9 days each dose. It doesn't cause hair loss. It can and did cause severe tinnitus, which stopped me getting the 3rd dose. Others around me had similar experiences with nausea, some worse than others. I think it depends on how well you react to the anti-nausea drugs as to how bad it gets. Cisplatin can cause permanent hearing loss too. I have no experience with Erbitux, it wasn't offered as an option for me.

Cisplatin is platinum based so same class as carboplatin for example. Erbitux is newer and based on a different principle. Others may have more of the medical differences.

Cisplatin is recognized as the go-to chemo for oral cancers for "typical" cases for quite a long time. It can create long term side effects such as hearing loss if not carefully monitored. I did not lose hair and experienced few side effect when received in smaller weekly doses.

Erbitux causes various skin problems from what I read as I did not receive this chemo. It seems to have fewer long term side effects so maybe a bit less toxic and overall less harsh on the body.

Nausea was controlled very well for me even during TPF induction, combination of Taxotere, Cisplatin, and 5FU. It knocked me down very hard but nausea was managed through various meds.

I did lose my hair during TPF and since my hair stayed put while getting cisplatin during rad-chemo I suspect it was the taxotere (taxane) or the 5FU that was the culprit.

One thing very important in your specific case is your brother at 26 is relatively very young for SCC OC. The recommended therapies are based on many factors, some include age and health of patient.

Since chemo and radiation are very hard on the body, the doctors will consider the risk of long term side effects. The doctor suggesting Erbitux may do so since it might be less toxic and possibly fewer long term side effects.

Best bet is to ask specifically the basis for each recommendation and the tradeoff against using the other.

Good luck to you both, Don

I had the 3 big bags of Cisplatin and a nice to go bag of 5FU that was given after the Cisplatin. I came back in 4 days and they removed the 5FU. I went through every known anti-emetic and finally Emend fixed it. That was a new drug at the time and my father was a pharmacist and asked them to try it.

I got ringing in the ears with the first round of Cisplatin and it never went away. My creatinine went up immediately and took a couple of years to come back down. I had 3 bags of fluids a day for a about 6 months to protect the kidneys.

I had XMRT and the hair came out along the base of the neck on both sides. It came back real curly like the Hasidic Jewish "locks".

[quote=ChristineB]Patients on cisplatin normally will not lose their hair, not sure about with Erbitux (or if its mixed with another type of chemo). Radiation will cause a small spot (about the size of a quarter) of hair loss somewhere on the back of the head. Its not usually noticeable and is only temporary.

I think cisplatin is the most effective type of chemo for OC. Try to opt for weekly smaller doses instead of the 3 'big bag' method of whichever your brother gets. Smaller doses are much easier to tolerate than the larger ones. Many of us with cisplatin only received the first 2 'big bag' doses as we were too sick for the third round of chemo.

As with anything these things come with warnings. No matter which chemo is used make sure to take in extra water to flush it out of the kidneys. This is especially important with cisplatin. Hearing loss can also occur. From what Ive seen discussed, with Erbitux, the more of a rash the patient gets the better the chemo is working. Friend who have had this type tell me it itches like crazy.

Remember this all is only temporary. Rashes heal and hair grows back. If experiencing hearing loss and kidney damage, those are permanent. But also as I stated earlier, less likely with the smaller weekly doses.
[/quote]

Thank you so much for your opinion. I will see if the doctor can do small does of cisplatin. I read a couple articles re: cisplatin v Erbitux. Did your friend have any reoccurences after doing Erbitux? I will definitely tell him to drink a lot of water! thank you for the advice. I am worried about Cisplatin causing hearing loss and kidney damage. I want whats the best care but I also want him to have a good quality of life.

[quote=OzMojo]Cisplatin redefined the word nausea for 9 days each dose. It doesn't cause hair loss. It can and did cause severe tinnitus, which stopped me getting the 3rd dose. Others around me had similar experiences with nausea, some worse than others. I think it depends on how well you react to the anti-nausea drugs as to how bad it gets. Cisplatin can cause permanent hearing loss too. I have no experience with Erbitux, it wasn't offered as an option for me.[/quote]

ouch 9 days of Nausea! I am worried about the tinnitus and the hearing loss. Which nausea medicine did you take?

[quote=donfoo]Cisplatin is platinum based so same class as carboplatin for example. Erbitux is newer and based on a different principle. Others may have more of the medical differences.

Cisplatin is recognized as the go-to chemo for oral cancers for "typical" cases for quite a long time. It can create long term side effects such as hearing loss if not carefully monitored. I did not lose hair and experienced few side effect when received in smaller weekly doses.

Erbitux causes various skin problems from what I read as I did not receive this chemo. It seems to have fewer long term side effects so maybe a bit less toxic and overall less harsh on the body.

Nausea was controlled very well for me even during TPF induction, combination of Taxotere, Cisplatin, and 5FU. It knocked me down very hard but nausea was managed through various meds.

I did lose my hair during TPF and since my hair stayed put while getting cisplatin during rad-chemo I suspect it was the taxotere (taxane) or the 5FU that was the culprit.

One thing very important in your specific case is your brother at 26 is relatively very young for SCC OC. The recommended therapies are based on many factors, some include age and health of patient.

Since chemo and radiation are very hard on the body, the doctors will consider the risk of long term side effects. The doctor suggesting Erbitux may do so since it might be less toxic and possibly fewer long term side effects.

Best bet is to ask specifically the basis for each recommendation and the tradeoff against using the other.

Good luck to you both, Don[/quote]

I didnt think of it like that- I didnt think of the long term side affects until everyones opinions. I will definitely have to discuss the trade offs with my family. Looks like Cisplatin works well in smaller weekly doses. Why did you have to do PF induction, combination of Taxotere, Cisplatin, and 5FU?

[quote] Why did you have to do PF induction, combination of Taxotere, Cisplatin, and 5FU?[/quote]The purpose of induction chemo was to reduce the size of the tumor. That makes the radiation mapping enable smaller painting/dosing fields which minimizes the long term side effects of radiation.

I had three rounds of TPF at three week intervals. By the second week of the first round, there was visible tumor reduction. More after the second round and by the time I was done there was zero visible tumor left. The final report stated "complete or near complete resolution...".

You know chemo does not kill cancer, just micro cells. Surgery and radiation are the only sure methods to kill it. So, rads and chemo were given after to ensure a total kill zone. So far so good.

AK I took Odansetron, Pramin and Dexemethasone. The Dex was only for two days after each dose. Odansetron didn't do much for me. The Pramin was ok but short acting. I had to take it very regularly.

Cisplatin reactions vary quite a bit. The doctors will give you a list of possible side effects you may experience none or several of them to varying degrees. Cisplatin is very effective combined with radiation, but like all drugs you need to be aware of and manage the side effects. Your brother should keep in close contact with the doctors during treatment and advise them of any changes. For example things like nausea they can change the medications to find one that works for him.