| Joined: May 2008 Posts: 43 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2008 Posts: 43 | i had cisplatin given to me daily on weeks 1 ,4, and 7 of radiation monday thru friday i got zofran with it and i didnt have a bit of nausea i havent read of any one else getting it daily like i did.
Tonsil into base of tongue 3to4cm tumor. Giant lemon sized 9cm lymphnode. Squamos cell carcinoma April 5 diagnosed. June 5 started treatment. Cetuximab Carboplatin Paclitaxel once a week for 6 weeks.Then 7 weeks of radiation plus chemo cisplatin then 4 weeks rest then neck disection was Nov 7 2008 | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Angels, I forgot to mention that Bill had a Cisplatin/Taxol combination and although his hair thinned, he kept most of it and never looked "bald."
Also, he really never had nausea. The worst for him weirdly enough was hiccups...starting the day after treatment and going for a day or two and they were awful. The MO prescribed a couple of things that kept it at bay. Both your RO and your MO's office can help you with symptoms that arise...don't hesitate to call them or mention it at your appointments. Many times they will have samples to give you at no charge...I know we got several things...one for nausea that we never had to use.
Do you have someone to drive you to appointments?? You won't need it at first, but later in treatment, you will feel pretty lousy and really it won't be very safe for you to drive. Get this arranged now before it becomes necessary. The American Cancer Society has a program to drive patients to treatments if you get to that point.
Hugs, Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | How often will you get the cisplatin? Back in the day (2 years ago) most of us got 3 large doses and now many are getting smaller weekly doses which have lessened the adverse side effects like nausea and hearing loss. To me the delivery is more important than the type of chemo so check this out.
I haven't read all the posts before me but the hair loss on the back of 6the neck is due to the exit radiation, not Cis.
You also might want to inquire about Carboplatin.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: May 2008 Posts: 219 | Deb, I heard about the Am. C. Soc. and I contacted them. But they can't hardly find people willing to carry people very much. They told me they could help but could only offer 2 days per week next week if all goes well on the dentist appt so I can start my radiation treatments. Any other transportation you know of? Thanks Angel
David, I am supposed to receive cisplatin once a week for the duration of the radiation treatments which will be for 35 treatments (7 weeks). I am glad to hear that on the hair. Mine is very long and I have a lot of it so if I was going to loose it I had planned to just cut it and donate it. Thanks, Angel
Last edited by angels1313; 10-10-2008 05:41 PM.
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | Angel-You should check and see if your town or county has transportation available for doctor appointments. Our town runs a van but it's only available a few days a week. As for the Cisplatin, Neil had the smaller doses once a week for 7 weeks. He had it concurrent with the radiation. He did not lose any hair or hearing. He was nauseus in the beginning but the meds they gave him worked for the most part. It was hard to say what the worst side effect was because the radiation made him feel so horrible we weren't sure what side effects was what. The exhaustion was the worst part in terms of getting on with daily life. Good Luck!
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Angel, Also check at the Cancer Center. I was told that the one I went to was able to provide local transport when necessary.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: May 2008 Posts: 219 | Sue and Don, Thank you for the ideas. I have someone checking on the van but they said because I have medicare and not medicaid I don't qualify. I bought a van but since they told me I would be taking chemo, I dought I will be able to drive myself. I'll just have to play it by ear day by day. Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Angel,
If your nausea is kept under control, you should be OK to drive for at least three weeks....but then...all bets are off. Some posters here were able to take themselves to treatment OK...some did but should not have...and I know that my Bill was not competent to drive the last two weeks of treatment.
Keep calling various agencies...I'm sure the gas crisis has dampened the volunteers, but maybe churches or retirement groups might be of help. Also maybe the local SPOHNC organization would have someone that would sign on for a couple of weeks. Like I said, ask those chemo nurses...they have a lot of contact with patients every day and probably discuss transportation issues as well...they might be able to put you in contact with someone.
Good luck. Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | The antiemetic drugs are really expensive. When I was taking Zofran it was $35 a tablet (Emend is a newer, similar drug). They are both in the SSRI family of drugs and literally switch off the nausea center in the brain. It only works about 60% of the time and should not be used longer than a week at a time since it will lose it's effectiveness.
Some of the less expensive drugs are Compazine and Ativan. Compazine also comes in a suppository form which is very handy if you can't keep anything down.
Sometimes they will add Reglan into the mix (to keep things moving though your system).
Cisplatin is not only tough on the kidneys but also causes mouth sores and does a number on the stomach. I was also prescribed industrial strength antiacids (Pepcid, etc.). It is absolutely critical that you stay hydrated during your entire treatment adventure. If you throw up, you must replace the fluids you lost. Keep a daily journal of your water and calory intake.
Everyone responds differently to treatment - some have responded very well to anti nausea drugs.
When you start getting into the pain meds you WILL have constipation problems and they can be quite severe. Speak with your nutritionist about countermeasures.
The advice that I got at the time was to have a full stomach before infusion and eat snacks during infusion. Most infusion centers will provide them. I didn't find the infusion thing to be so bad, like others have said they typically have very special and compassionate nurses in the infusion unit. It's also the best place to get rehydrated (rather then go to emergency). Most of the chairs had TV's, I brought an iPod and listened to music and/or read. Ask for a heating pad for your arm with the IV - it will make it a lot more comfortable.
About hair loss. Cisplatin isn't the worst chemo drug for this side effect - you will lose some hair. Radiation will permanently kill the hair follicles directly in the beam field. So for men, we never have to shave below our chin again. I am assuming an oropharyngeal cancer.
Your local ACS should be able to provide you with drivers. If you have to drive more than 60 miles RT to Tx, they will also pay you a small mileage allowance (not to exceed $200 - if someone is driving you)
Last edited by Gary; 10-12-2008 04:00 PM.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Hi Angel,
I was able to drive myself to radiotherapy everyday except for the days that I was receiving chemotherapy too. The cancer centre here insisted that I use the transport that the hospital provided for those days when I was receiving both treatments, and I'm glad I did.
I thought I would have to get assistance during the last couple of weeks of radiotherapy only days but I didn't. Having said that I had transport organised just in case.
I had Cisplatin 1 day per week for 6 weeks without any problems. The anti nausea medication they provided certainly helped me there. Besides my hair thinning a little I had no other obvious side effects from the chemo.
Take Care - Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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