We're just starting on this journey. Scared, of course. Planned IMRT radiation to begin 7/16/12. We've been reading HPV+16 BOT is very treatable and trying to be positive.

The question we are still wrestling with is whether to enter the current clinical trial which measures effectiveness of radiation + Cisplatin vs. radiation + Cetuximab. After our initial meeting with doc, we thought definitely enter the trial, because it appears the side effects of Cetuximab are so much less.

Now, reading more and re-listening to our recording of meeting with doc, it appears clear that the standard of care for this type of cancer at this stage is radiation + Cisplatin. So, why try the Cetuximab? Have also read the posting from one person here advising against Cetuximab. Anyone else have input/references/opinions on this? Thanks very much. Great to know this forum is here.

Hello. I had my treatment two years ago and I got cisplatin every week for 7 weeks and I have to say that the side effects were not bad at all. I had medication for the nausea, and then special pills to take for the "breakout nausea" which really worked well. In all 7 treatments I only became sick about 5 or 6 times and the meds for the breakout nausea got me feeling better in 1/2 hour or so. I continued to work (part time) through my treatment.

Good luck and it is nice to know tha you will be feeling better and have your treatment behind you in several months!

Welcome to our forum - sorry you are here, glad you found us.

The cisplatin is cytotoxic - in particular neuro- and nephrotoxic. My husband did very well on the cetuximab, with noticable improvement to the positive node within about a week and a half of the loading dose. He also had first cycle rash, which is associated with a better result.

The jury is still out on exactly where cetuximab helps most; they don't have a biomarker to point that says yes or no to whether or not to use an EFGR inhibitor, or which inhibitor to use. In my husband's case, he was borderline radiotherapy alone or chemotherapy plus radiation. I don't think his doctors wanted to use a neurotoxic agent on a scientist, so they carefully explained the level of evidence they had for their recommendation for cetuximab was not as strong as for cisplation. It was an informed decision.

One question - did your husband ever smoke, or did he smoke once and then quit?

Another questions - in the cisplatin arm, is it the three doses of cisplatin or weekly?

Hi Duffymo,
Our route was the Cistplatin as you can see in my signature, but he also had 5FU and Taxotere as well as 60 IMRT. We are now 8 months out and still clear. Kevin is eating what he wants and feeling pretty good. He did lose 56 pounds and has not put any back on. If he gains a few pounds and mows the lawn, he loses it. He still loses weight easily so really has to keep up the calories. He did not get too sick either. Yes he vomited, but not on a regular basis.
Have they talked about a PEG tube? Really something to consider. Kevin didn't use his too much because he HATED it, but many people need it and use it regularly. The most important thing is to keep up hydration and nutrition. Invest in Ensure or one of the like meal replacements. Kevin lived on those for quite some time as well as scrambled eggs. Water is a must. I think Christine tells everyone to shoot for 48 oz a day.
The only problem Kevin had with the Cistplatin is a constant ringing in his ears. He had this prior to tx too, but it is much worse now. It definitely affected his hearing. Would we do it again, yes. The nodes involved responded within days of the first dose. He had the 3 chemos every 3 weeks instead of once a week.
You have found a wonderful support system here with us. We are family and have been through it all together. Please keep in touch with us as you begin the journey. It is a rough trip, but you WILL come out ok. BOT HPV+ has a pretty positive outcome. At least that's what we have been told and are counting on!! ;o)
Feel free to personal message me if you want.
Blessings,
Kathy

Have you read Charms discussion of Erbitux (Cetuximab) and HPV? Go to the top of the page and enter Cetuximab & HPV in the search box and then click on Re: Erbitux and HPV do not play together well.

I had the "Three Big Bag Method" of Cis and it was brutal but since then many have gotten the same quantity of Cis in 6 smaller weekly doses and they seem to have less side effects and hopefully the same cellular response.

DuffyMo

I'm not going to repeat everything in the thread that DavidCPA mentioned, especially since it sounds like you already read it.
If not, here is the direct link Erbitux & HPV do not play well together
In rereading those posts from last year, I realized that I should have added in that at first my wife and I were ecstatic about choosing Erbitux. Just like one poster noted, the Erbitux shrank my two cancerous lymph nodes like magic, much much faster than anyone expected. Plus the salvage surgery after the cancer came back showed that the combo of radiation & Erbitux not only shrank the lmyph nodes but actually killed all the cancer cells - they were totally necrotic according to the pathology report.
But that's the kicker: the Erbitux did not do it's magic on the primary base of tongue tumor. Platinum based chemo like Cisplatin or Carboplatin does crush primary tumors (in conjunction with radiation) and more importantly also works well if there is Perineural Involvement (PNI). Or so I was told by my MO when we did our second round of chemo.
It's a pretty smart board here and so far nobody has posted any reliable studies contradicting the studies I cited and relied upon in my screed against Erbitux.
Again, just because it did not work for me, does not mean it would not work for your husband, but without any studies showing that Erbitux plays well with HPV+, it's a gamble.
Actually the Erbitux complications were far worse for me than the platinum based Carboplatin so my personal experience belies the advertising that Erbitux is "easier or less toxic".

But maybe there will be OCF members with Base of tongue cancer for whom Erbitux worked not only on the lymph nodes but also for the BOT tumor.
Charm

Just to make things more complicated, my husband's cancer was tonsillar, not base of tongue, and it is possible that there is a difference in how the different protocols work depending on the type of the primary tumor.

Yes actually chances are maybe it was a smaller tumor and caught earlier since the tonsil is visible - perhaps that why it was more effective on your hubby's tumo Maria. Since I'm a tongue cancer patient (oral tongue) I defer to charm and Dave but I too read that Erbitux does not do well with HPV+ cancers - actually is better for my type of cancer (non HPV ) - however one could also point out hat the primary treatment for my type of cancer - is actually surgery - then chemo and rads - so this begs the question - is Erbitux more effective on my type of cancer because the primary tumor is gone? Welcome - sorry you had to join our group - do have your dr look at the most recent studies on Erbitux and HPV related cancer take care... Ps cisplatin wasn't too bad for me either...

Is Erbitux the same as Cetuximab? I thought the original question was Cistplatin or that? Kevin had the Cistplatin, 5FU and Taxotere first, then the Erbitux with the radiation. Hopefully that was enough. I had not read the Erbitux does not play well with HPV. Now a bit nervous, but he was blasted 2x first with the others.

I remember this coming up last year when my brother was in the middle of treatment. I was concerned so I rang the medical oncologist's office. Not surprisingly, they refused to talk to me, as I wasn't my brother or his wife. He was halfway through the treatment by that stage and I didn't want to stress or upset people any more than they were so I let it go.