I'm wondering what chemo therapy options have been offered, what it felt like to get through the therapy, and how things are progressing...
Thanks for any info...

Traditional forms of chemotherapy have not shown to be very effective with head and cancers. There may be clinical trials for new types that I am unaware of.

Cisplatin, or Platinol, is the most common chemotherapy used for head and neck cancers. It is an alkylating agent that enhances oxygenation of the tissues to make radiation more effective. It adds as much as a 10% higher survival rate when used as a adjunct to radiation. Radiation is the primary treatment modality, the chemo is secondary to it.

I had Cisplatin. Orignally they had scheduled 3 treatments (or infusions) every three weeks. The infusion process itself was no big deal. They hook you up to an IV in a comfortable, reclining chair. Most of the chairs at my hospital had TV's also. They also provided juices, snacks and a heating pad for the arm with the IV -makes it much more comfortable. Many sleep through the infusion. It was a half day or less deal. The nausea, for me, wasn't a problem until as much as 3 days later and that situation improved the further away from the infusion. They shortened my infusion protocol to 2. I am not positive why. The tumor responded extremely well - not being visible (i.e., completely melted) at all on a CT scan 3 weeks into treatment. I had a rough time with nausea after the second treatment, was briefly hospitalized twice for rehydration, and this may also have played a role. I kind of remember the oncologist mentioning that the complete response, so early, was why they decided that the last infusion wasn't necessary.

Everyone has a different experience so take everything I say with a grain of salt. Your experience may be much less intense. Some respond very well to the anti-emetic (nausea) meds and some don't (which are the minority).

I'm doing great now - life is back to normal. Very minimal side effects now. If I could go back and start over, I would have taken the same path.

I had a combination of taxol and carboplatin during once-a-week IV infusions over six weeks. It was roughly a 4 hour ordeal each week. I was put in a small room with a bed and TV and they would bring me warm blankets, drinks and munchies. They pumped 4 different "pre-meds" into me before the actual chemo drugs. These included a steriod, an anti-nausea agent, an antihistamine and an anti-acid. The anti-acid made the arm in which the IV was stuck ache. The antihistamine simultaneously made me sleepy and restless. It then took an hour for the taxol and 30 minutes for the carboplatin. The taxol burned some when it was going in. Inbetween each drug, the IV was flushed with cool saline for about 5 minutes. I grew to really appreciate the cool saline! I didn't have any problems with nausea, but I would wake up every morning with stomach cramps and my daily energy became less and less as the process progressed. Over all I tollerated the protocol very well and I had a good response to it. The chemo shrunk my primary tumor to nothing and significantly shrunk my lymph node tumor. This all went on to help the radiation to be more effective and hopefully prevent any distant micro-mets.

I'm four and a half months post-treatment and I'm doing quite well now. My hair has grown back (except where it was radiated), although it's come back even curlier than it was -- and it was pretty curly to start with. There's also considerably more gray hair than before treatment. I still have a little residual numbness in the fingers and thumb of my left hand, but very recently I have noticed the feeling slowing coming back.

I'm glad I did it and I would do it all again the same way. In fact, from a purely side effects stand point, if I had my choice of six more weeks of chemo or the planned six weeks of radiation, I would have taken the chemo.

-Brett

Amen Brett,

Just my opinion, but if I had the choice between Chemo and Radiation. I'd take chemo. Gary phrased it well, too.

I don't say this to mean you should do one instead of the other. I say it to make the point that chemo sometimes is not as bad as people make it out to be.

I wish I'd had chemo/radiation as my protocol. Like radiation, everyone has different reactions to chemo and to the different forms of chemo.

But, as has been said before by Joanna " I want every weapon in the arsenal they can give me to fight with"

Take care and I know you'll make the right choice for yourself.

Dinah

I too had the six week induction chemo (Taxol and Carboplatinum) after which I had chemo and radiation combined. My doctor also had me on Xeloda, an oral chemo drug that converts into 5-FU at the site of the tumor. My experience was a lot like Brett's and, if anything, was a bit easier. The Xeloda gave me heartburn so the oncologist put me on Nexium which I think may have helped the overall stomach issues. I got a portacath since my veins are nonexistent and that made the weekly session fairly nontraumatic; the worse part was actually the Benadryl (the antihistamine) which made me feel a bit high and quite sleepy.

My overall protocol was based on one from a study at Northwestern. I should be clear that I'm not strictly an oral cancer; my tumor originated in the supraglottal part of my larynx and extended up the hypopharynx to just below my tonsil. That said, after the induction chemo, the ENT said I had had a "complete" response. I did go on to radiation and chemo and the radiation experience was more challenging because of the extensive chemo (I was really softened up by then).

I'm now just over six months post-treatment; all is going well and my followups have all been successful. Aside from the standard dry mouth, I'm really pretty much back to normal.

Hope this helps.
Laura

We went through alot of conflicting opinions and discussion when my husband was trying to decide if chemo should be added to his radiation. Because there was extracapsular spread in a lymph node, we decided he should go ahead with it. He was scheduled for chemo once per week for the 7 weeks of radiation, but was only able to complete 4 of them due to side effects. But I think he is glad that he did everything he could

He is now about 13 months post treatment and doing very well.

Anita

I was at a clinical trial given concurrent chemo and radiation. I was given 4 rounds of cisplatin on a weekly basis.My blood had to be tested prior to each treatment to make sure my white blood cell count level is all right. It was a 2 hour injection and before it , there was a shot of anti-nausea medicine. I still could read books and talk and drink water during the process. Nothing to worry about. I could even drive back home and take my lunch. The nausea effect was the worst on the following day. The chemo did not have any effect on my hair but it did affect my emotional state.

Karen

First go around I had one session of chemo each week concurrent with the radiation treatment, Cisplatin being the drug of choice.

Started with blood test and Saline drip, an anti-nausia drug, one other that I can't remember but hurt like heck if they put it in too fast, then the Cisplatin, then more saline, and another drug. All in all my treatment about 5-6 hours. Would go in for the morning rad treatment, then to the chemo session, then afterward back for the second rad treatment. First few weeks no big side effects, nausea or such. For some reason I did manage to have a very healty appetite the night of the chemo treatment. Didn't feel too good the day after, but that only lasted for a day also.

During treatment, read, shot the bull with the nurse, napped.

Second time around I had apparently reached my limit of cisplatin, had to stop after three treatments, bothering my hearing. Chemo in my case used in addition to radiotherapy to help the radiation do it's job.
Bob

TAXOL AND CARBBOPLATEN FOR ME 8 WEEKLY SESSIONS..

I also had taxol and carboplaten and radiation, chemo should have gone 8 weeks. Only went 4, again everyone is a little different. Also the portacath is the way to go.

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.