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.

Hi everyone,
We met with the tumor board this morning and their opinion was 6 weeks of IMRT and 3 big bags of Cisplatin. I asked if he can do the smaller doses over periods of time and they said no because studies show the chemo to be most affective being used 3 times. we are going to get full details when we meet with the radiation and chemo doctor one on one. In the meantime my brother is at the dentist getting his X-rays and fluoride trays done. (They actually had it at the institute! Yay one less trip)

Glad you were able to be at tumor board. Didn't you find the increased your trust in the process and the quality of thought and decision making that goes into your treatment planning?

Generally, the concurrent platinum based chemo is there primarily for enhancing the effectiveness of the radiation. Chemo can kill micro cancer cells which may be the secondary benefit. Maybe the stronger doses at lesser frequency is better at obtaining this second benefit. This makes sense as he had no prior chemo treatments.

In my case, I had induction TPF, a series of 3 cycles at 3 weeks for 9 weeks. This was Monster Drano Deluxe and beat down any micro cells. I think this provided the option to go with weekly lower dose Carboplatin during concurrent chemoradiation in order to support the primary goal of enhancing the radiation.

Given HPV+ status this cancer is a slow grower so I feel like between induction and chemo-rads all the cancer was beat down as much as possible and loading up on Cisplatin would be overly aggressive.

Sounds logical but I've been to the 420 doc today so this can be all blue smoke. :-)

It does sound like he's in the best of hands. Let us know how he goes.

Most here report less side effects that have had the 6 bags vs the 3 bags of Cis and quite a few here on the 3 big bag method never get the 3rd bag due to combined severe side effects so I wonder if the tumor board should perhaps consider comparing 6 small bags vs 2 big bags? I doubt that there's a study to guide them but I wonder which is really better.

I also agree with Don that maybe with HPV all this Cis is an overkill but I had the 3 bags and I'm here today 8 years later so even though I thought my Tx was going to kill me, I'm not going to bitch.

Here are some studies David. You may have to register to view. Weekly vs 3 bag Cisplatin. Also, recent reports say there is no benefit with HPV positivity seen outside the oropharynx. I've only seen one report with oral cancer, and HPV positivity benefit, which said the benefit was only with p16 positivity too, so both were needed.

Weekly vs 3 bag Cisplatin:

http://www.ncbi.nlm.nih.gov/pubmed/18607863

http://www.ro-journal.com/content/7/1/215

http://www.apocpcontrol.net/paper_file/issue_abs/Volume12_No5/1185-88%2520c%25204.1%2520Fatih%2520Kose.pdf

Variable risk prognosis with HPV:

http://oralcancernews.org/wp/study-...ncer-patients-to-vary-depending-on-site/

Thanks Paul for the links.

The first sort of echos the obvious in that weekly dosage is better tolerated than the larger 3 cycle. What was interesting was the 100 mg/m dosing was not tolerated by any of the patients, all failing to make the 3rd dose. They must have feeling poorly and got only 200 cum dosage.

The 80mg/m x 3 group got 240 but had to suffer the side effects of larger dosing. They must have felt pretty bad too.

The weekly dose of 40 mg/m x 6/6 actually delivered the same or more cumm dosing and better tolerated.

In my case, the MO observed my tolerance to TPF series and was very confident with a smile that the weekly carbo would be a breeze. In fact, I felt no chemo side effects so at least in my case I can vote for the obvious conclusion. :-)

I have to jump in on the HPV positive being slow growing .
Unfortunately not. Kris was HPV P16 positive. He had Cisplatin. He had recurrence 10 months later.
There appear to be subsets of HPV, 4 if my memory is correct. One subset acts like HPV negative and does not respond as well to chemo and rads.
Kris must have been in this subset.
I do not know whether they are teasing out these subsets for each patient prior to commencing treatment. I hope that this will eventually occur.
Tammy

Thanks. My understanding is HPV P16 is the strain that does respond well to treatment and is slow growing. There are many kinds of HPV but if he has the common P16 and it came back at 10 months this seems reasonable and in the range. Check this chart out although it does not specify if p16. https://dl.dropboxusercontent.com/u/15178408/hpv-survival.png

Just to clarify my definition of fast vs slow. A "fast" growing cancer would spread in a few weeks or a month or two. When slow growing is mentioned the tumor can take many months to grow so much easier to catch and treat.

Carboplatin was the easiest for me also. As we both did TPF IC, Don, the worst part is that there is no time for dosage reduction or treatment stoppage, unless you can't complete the rest of the two cycles spaced 21 days apart. By that time you already received high doses of chemo in 5 days. Mine was 160mg Cisplatin, 160mg Taxotere, and 1600mg 5-FU, plus a dozen or so of other medications, and a port put in lol. I remember the oncologist asking if I wanted my tooth extracted, and the PA behind him was shaking his head silently, eyes wide open in fear, "No!" Now I know why, somewhere along the line it was too toxic for me, so treatment was completely stopped, which is a negative aspect with TPF IC, and why it's controversial. One study said 50% didn't complete all the cycles or were unable to do CRT to follow due to the toxicities. On a postitve note, it works, very well, especially with HPV positive OPSCC.

Anyway, back to the topic, HPV-16 is a high risk HPV variant. P16 is a tumor suppressor gene, that is different than HPV-16, and is usually a negative predictor of outcome to be p16 positive with cancer, but with HPV in the oropharynx, it has better outcome being HPV-16 positive and p16 positive. They sometimes test for p16 in oropharynx for HPV first, which usually indicates being HPV positive too, but not in all cases, and the next step should be to test for HPV.

As Tammy mentioned, there are different variants of HPV-16/18. Type B seems to be more aggressive, similar to smoking related, for unknown reason, smoking history may be involved. As far as aggressiveness, I may be HPV involved, probably, so, never tested, non-smoker, moderate drinking, small T1, and had 8 recurrences, some in a month two, 6 months after a clear scan, and after each recurrence, the time frame between the two recurrences shortened. I have read this occurs with cancer. The average time for oropharynx recurrence, HPV, non HPV, is about the same, 8 months, except for distant metastases, I believe. Also, while smoking related oropharyngeal cancer levels off after 2 years, for some reason, some HPV positive cancers show failure after 3 years, 5 years, in distant areas, some usually not associated with metastases like liver, some other areas, but lungs is the most common, HPV or non HPV.

[quote]One study said 50% didn't complete all the cycles or were unable to do CRT to follow due to the toxicities. On a postitve note, it works, very well, especially with HPV positive OPSCC. [/quote]I can attest to the brutality and effectiveness of TPF IC. I was nearly dead by the end of the 3rd round and TOLD them I needed more time to recover before starting CRT. By the same token the PET reported "near to complete resolution". I'd do the same treatment in a blink.

HPV 16? I tried to follow along but more confused than before. I just thought a positive p16 staining meant your odds of long term cure just leaped about 30 points.

I always thought HPV "negative" was associated with the smoker/drinker oral cancer with poorer outcomes.

Glad you are here to keep us, well at least me, from getting too far off the science trail.

Thanks Don

Don,

1. I woudn't do it again. There are other less toxic options with the same outcome for HPV oropharynx cancer, and just may be an overkill, pun intended. My response was different, beyond brutal, but my cancer was gone just from the 5 days TPF, that almost killed me, which I only was able to later find out after 9 months. Laying in a hospital bed for 6 months, in isolation, being told you're too sick to have anything done, let alone not be able to walk, was the worst. As such, that's why my cancer was able to spread, had more recurrences, 8, but each their own. One day I'll write about my experience.

2. HPV-16 is the high risk HPV variant, which is the type mostly associated with HPV oropharyngeal cancer. To a lesser extent, HPV 18. There are about 150 HPV types, some simple warts, and about 15 are high risk that can go on to cause cancer, in some, like ours.

http://oralcancernews.org/wp/study-...ncer-patients-to-vary-depending-on-site/

3. Yes, being HPV-16 positive, p16 positive ( tumor suppressor gene) in oropharyngeal cancer is good, but with other cancers being p16 positive is a negative factor, and reduces risk of survival.

4. Yes, HPV negative is "usually" associated with smoking , drinking, with poorer outcome. Some HPV seems to respond like smoking, drinking caused does, more aggressive.

http://www.news-medical.net/news/20...-positive-and-HPV-negative-patients.aspx




I probably confused it more. The more I know the less I understand too

Hi there... For me cisplatin was a non issue. I was mildly nauseated by it - that's it.

Hairloss is caused by rads usually NOT cis.

I lost ALL my hair from the top of my ears down thanks to rads, and it thinned out all over the left side where I was receiving the bulk of rads. (I had bilateral radiation to my neck and my mouth and tongue was hit from the left side.

Cis can damage ears so a hearing test is important.
And it is very hard on the kidneys. my hospital got around that by keeping me in over night on infusion days. They ran an IV for 24 hours and I lived in the bathroom for the whole time. ;o)

drink drink drink...

hugs.