Hi Ed!

I had chemo induction prior to starting radiation. This was 3 rounds (2 weeks apart) of cisplatin, 5fu and taxotere. I would go to the doctor's office on Monday and be there on an IV all day getting the chemo, fluids and anti-nausea meds. I had a chemo port and they sent me home with more chemo for another 5 days. The ringing in my ears started right away and has not gone away but other than that, the only other side effect was my hair fell out after the first week. I had no nausea whatsoever and never threw up! I'm not sure when the tingling in my hands and feet started but that's still with me today. With the radiation, I had 7 rounds of Carboplatin. The purpose of the chemo induction was to try to get rid of the tumors in my neck so I wouldn't need a neck dissection. It worked!

At a recent support group meeting, my surgeon was the co-facillitator and they were talking about the different treatment protocols. Not too many people have the chemo induction like I did and I asked him about it. His answer scared the hell out of me and I'm glad I didn't know it prior to treatment. He said "most people can't make it through it".

I live alone and didn't have a caregiver and worked all the way through treatment until I was fired 2 weeks before treatment ended. My advice to you is to be strong, believe in yourself and have a positive attitude!

Good luck and keep posting!!

Cathi

Ed,

When I did my treatment at U of M my Oncologist said they were going with Cisplatin weekly. When I mentioned some hearing loss from an old ear infection, he imediatly changed to the Carbo. I asked him what the difference was and he said "Not much" said they are both old drugs in use for over thirty years and he had no real preferance. Since Cis. came our a little later then Carbo, it must make it a default of some sort.

As I said earlir, I did my chemo weekly with no ill effects.

Will be discussing carboplatin with my oncologist tomorrow.

Any experiences with concentrated chemo (twice, three weeks apart, as opposed to weekly smaller dosages)?

Thanks everyone, for the info and support--am VERY happy I found this site!

Smaller weekly doses are more easily tolerated. They do the same thing by helping the radiation work better. If given a choice I would suggest going for the weekly doses.

I was not given that option 6 years ago but we see more and more treatment centers using the weekly Cis method vs the gold standard "3 big Bag" method. From what we have seen on this site, most, if not all people that got the weekly Cis bags reported less severe side effects than the 3 bag method. I don't recall anyone getting Carbo in weekly doses but we don't see to many getting Carbo to begin with.

Cathie Carpenter...I had TPF Induction chemo, but could only do one week, which hospitalized me for 6 months. It caused every type ailment, paralysis, blindness. It is the most effective killing Cancer out of all the chemo regimes, but there is debate on its use due to the high toxicities.

Good luck with our treatment Ed.

I read the weekly dosage of cisplatin reduced toxicities, but had more long term side effects than the big three.

Hi, Ed
As others have said, make sure you discuss the hearing loss and neuropathy with the doctors. You might request an audiologist evaluation for the hearing loss. Bring in a notebook and show them a printed copy of a study or two re: cisplatin so they will take you seriously. If you have a caregiver, bring them along with you, particularly if they are meaner that you are.

Now, about the mask. So, my husband the scientist with the physics background was not bothered by the mask, and found it comforting that it was keeping him in correct location relative to the treatment machine. I don't know if you will find this helpful (and I was chastened for being insensitive the last time I mentioned this) but it was his reaction to the mask, and presents a different way of thinking about it. He didn't want to move even a millimeter from target!

Best wishes,
Maria

Thanks, everyone. The audiology testing showed high frequency hearing loss consistent with my age (58), but I wonder how much of the "loss" is really my being unable to hear frequencies that happen to be the same as the steady "whoosh" I hear as my tinnitus. Anyhow, my doc reports that testing done to date gives cisplatin the edge over carboplatin in terms of efficacy for oral cancers (though not all cancers), and wanted to stay with that, but monitor me closely for neuropathy. Is not what I wanted to hear, but I guess killing cancer better is worth the risk. He says the risk is low because the dosage will be lower than in other cancers. I also noted that the literature on carboplatin also lists neurotoxicity as a risk, though less so that with cisplatin.

Had my run-through yesterday in preparation for the real radiation that begins the day after tomorrow. Run-thorugh was uneventful, handled it better than I thought, perhaps the 1/2 mg ativan helped. They are going to cut a hole in the mask around the mouthpiece as several here have suggested, which will increase at least my psychological discomfort. Then another pt in the waiting room said they had been momentarily unable to release his mask when the treatment was over; when I asked if I should bring a crowbar to my first session he was quick to say it was momentary and that techs were on top of the problem. I shall try to visualize the mask as my friend, holding me still for maximum benefit...

Chemo starts tomorrow too, first of two sessions three weeks apart, they tell me I will be there 6-7 hours for that. Is one able and up to doing anything to pass that time? Like read or watch TV? Or is one too affected by the drugs etc? Thanks.

Ed, good idea to visualize the mask as a positive...pilot hubby would take virtual trips in his airplane to stave off his anxiety over being "held down."

Re: the chemo sessions. Bill was given benedryl at the beginning of his sessions which I think included up to 10/11 meds thru the IV. So, he would usually nod off for an hour or two but then was able to read, roll to the bathroom or watch TV (which should be available in the treatment rooms) during his 7 hours there. The treatment room here was a very pleasant place (once you got over the shock of what was you were there for) ..bright, sunny, comfy reclining chairs, blankets if you are chilly and nurses that were top notch and very caring.

I hope your experience with chemo sessions compares. Best of luck,

Deb