Thank you all so much. It was really good to hear that some of you or your loved ones had similar regimes. My husband has stage 3 tonsillar. So he had surgery, reconstruction, temporary tracheostomy (which he handles really well), 2 days ago, two weeks after his surgery he started Taxolol. He will have this for 3 weeks, then radiation for three weeks, then cisplatin/taxol and radiation for three weeks. So far so good! Thank you all for your responses and words of wisdom...it really is so helpful...Best, Sara

I had Cisplatin all day on Tuesday then they hooked up a "to-go" bag of 5FU and I went to the hospital on Sunday to take some blood and remove the 5FU. I was supposed to do this 3 times at 3 week intervals but my counts were too bad the last round and they only gave me the Cisplatin. I am one of the "minority" in that I think I even puked up the bottom of my feet I was digging so deep to find something to puke. I tried every anti-emetic on the market and a couple of experimental ones but I puked right after radiation (about 30 minutes) and often the 3-5 day of the 5FU. My wife joked alot about the FU part of it being very descriptive. I had a little over 9 weeks of radiation starting the week of the first round of chemo. I have been cancer free for about 7 months now with no signs about the 5th week of treatment.

Ed

I was on a clinical trial of Carboplatin, I-Phosfomide (sp), and Taxol to shrink my tumor, most who were on that protocol it did shrink the tumor significantly. Lucky me, my tumor grew. I also was on 5FU (very funny Ed). I was on Cisplatin weekly during radiation. Most of these treatments are quite effective. My cancer seems to be misbehaving and hasn't responded to anything and has spread in spite of all treatment. Don't let this scare you, I am definately in the minority here.

God Bless

I had Cisplatin until my hearing got weird, then weekly Taxol and Carboplatin, the former causing total hair loss. This was in combination with rad. I am 18 months from end of treatment, full head of hair again which came in silver but didn't stay that way for long (grin). Feeling great. Chemo took a lot of time but the antihistamine caused me to sleep through most of it. When on cisplatin, I had to record urine output, but not when getting the other two drugs. I ended up with partially numb toes, but that went away after about 6 months. Do it again? You bet I would! Whatever is prescribed, sbk, you can handle it.

I had nightmares about choking on my own vomit with the mask on - must be a musician thing (right out of Spinal Tap)! Fortunately I never got ill during radiation. Ed's post made me laugh, he unfortunately must be one of the 40% that Zofran doesn't work for. I ended up using compazine suppositories with an Ativan stuck in it. I couldn't keep anything down. Thank God that part is over with. If any of you get Cisplatin, be sure to get a baseline hearing test before you start it. You should get at least 1 or 2 more hearing tests during treatment. And like Joanna said, any change in hearing or ringing in the ears, tell your oncologist immediately. Cisplatin can cause deafness in rare cases.

My husband also had the chemo/rad cocktail three times during his almost 9 week treatment. Each session consisted of the first day in the outpatient clinic for about six hours with the Cisplatin, Benedryl, Zofran, Ativan and fluids. Then they sent us home for four days of 5FU. (Even though a visiting nurse was "supposed" to flush his porta-cath with Heparin when each treatment was done, the last dose ran out in the middle of the night. I was a nervous wreck trying to flush that thing and get him unhooked!) Insurance apparently paid for that invisible visit. I need to find time to buck it. (My husband also used the f-word during this period .........many times!!)

Looking back, we are both happy that he had the ability to use the chemo. We feel that he took advantage of every treatment available for a cure.

Love,
Michelle

PS-Radiation kicked his ass much worse than the chemo.