| Joined: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | Tomorrow will be 10 days of RAD, 1 dose of cisplatin. Starting to feel the RAD effects, saliva and taste loss. Chemo wasn't too bad, nausea for 4 or 5 days, constant ringing in my ears. I didn't barf, we'll see on the next 2. I have the swollen lymph node on the left side of the neck that has become more swollen and red on and around it on that side of the neck. Quite painful at times, especially when wearing the mask. They have given me meds which help a lot. Is this normal? I think I should have had it removed, but 4 out of 5 doctors thought not. RADS would be needed anyway. Eating and drinking plenty, but losing my appetite. I know I have just begun, just want to know if this is all normal effects at this point.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Make sure to tell you MO immediately about the ringing in your ears. Some types of chemo (usually cisplatin) is known for permanent hearing loss. Your MO can switch you to another type of chemo. Do not get another dose without first consulting the MO.
So far it sounds like you are doing very well. The first 2 weeks are the easiest. Focus on what you can control, your intake. Every single day take in a minimum of 2500 calories and 48 oz of water. if you can push yourself to do more, thats even better. This is what will help you to get thru the whole thing easier.
Good luck! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Most start feeling the radiation effects, neck redness, others, between 10-14 days. Are you using the recommended cream own the neck? I agree with the hearing loss, ototoxicity, which is caused by chemo destroying the hair in the inner ear, cochlear, being hair is a fast acting cell, like cancer. Once the hearing is lost, diminished, it may not come back. I'm blind in one eye from chemo, which can effect the eyes too, so watch for vision changes, eye infections. Sounds pretty normal, so far, and can't say with my high dose cisplatin since I had tinnitus for 20 years, but did progressively worsen since then. Keep up the good work.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | Thanks, Christine & Paul, I'm going to see my MO on Tuesday, a week before my second dose. Erbitux or generically known as Cetuximab was mentioned as an alternative in the beginning.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | 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 | I have permanent high frequency hearing loss, the most common with Cisplatin, so do get them to switch you before the next chemo. I was told that the "ringing" you hear is DAMAGE so don't put this discussion off.
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: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | Into my third week now. It has become very hard to swallow now. The doctors prescribed lidocane. I'm trying to find out the best way to use it. I need to get it down into my throat. My mouth is getting very tender and I feel sore spots here and there. The ringing in my ears is still the same. I went to my MO today to see if I could use a different chemo drug other than cisplatin. He said he would rather keep using that. He could give it to me weekly at a lesser dose, or give me the higher dose as before just one more time, instead of 2 more every 3 weeks. I have a week to decide. Any advice would be much appreciated. BEST WISHES PAULB
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Thanks Calhoun. Tough decisions. No matter which one there will still be toxicities, which also go by the dosage amount, rate of infusion, and duration. Maybe they can slow the rate of infusion? I posted an article with Weekly vs Large 3 bag Cisplatin, if you use search, noting the toxicities reactions, and overall survival etc, and may have been other discussions on other posts. I believe weekly, in this abstract, had higher grade mucocitis than the large doses, 3 bags had higher grade neutropenia. Weekly had bette overall survival. I had Induction chemo, which were large doses, 160mg Cisplatin at once, and one of the 3 chemos, so there was no stopping or time to see of any adverse reactions, which was one draw back. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | My first (of 3) infusions took roughly four hours. Big bag of fluids, bag of anti- nausea and bag of cisplatin simultaneously, then another bag of fluids. Had a little discomfort during cisplatin and they slowed things down a bit. A few hours later the vein in my right arm was hard as a rock from the IV point to my armpit. I thought I was a tough guy and gave it a go with no port. The vein was back to normal in time for round two. They overreacted and this one took 7 hours. Last one was the happy medium with no discomfort or hard veins.
Last edited by ChrisN; 10-15-2013 03:03 PM.
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | I had weekly carboplatin during rads. It worked fine for me and still effective as it is platinum based. I have no personal reference to compare against the 3 week cycle and have zero interest in doing for the sake of comparing. lol
Only thing with some certainty is if you having ringing than that is a sign to get off the platinum stuff in a jiffy. good luck don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | Do I want to get off platinum completely? I'm leaning toward the 4 weekly doses. If there is any problem with the first week, we can go from there. I had problems with the IV's the first time. Should I have a port put in, or a pic-line in my upper arm for the 4 weekly doses. Thank you all for your input.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
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