| Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,294 Likes: 1 | Hi,
Best thing is to call your MO asap and inform them about the side effects such as ringing in the ear. Carboplatin is usually less toxic than Cisplatin yet still platinum based so it offers the benefit of being radio-sensitive and helping the radiation. I searched a lot for some trials that compared these two and never did find enough to sway me one way or the other in terms of which was more effective.
The MO and RO are the experts so get the options and recommendation and make your decision.
If you are only scheduled for a few chemo sessions at this point, getting a port is probably not going to be much benefit. In my case, the port went in early and it was used a lot between the induction chemo plus the weekly carbo plus plenty of saline IV.
Don Male, 1955 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
| | | | 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 | Wow I can't believe your MO won't back off Cisplatin despite the early ringing issues.
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | It is interesting but already being in treatment it may be a path they want to take. I think it also depends on the hearing ability to start with. I had amazing hearing at the outset, I had a bit of ringing but any hearing loss is unnoticeable to me.
hugs... I would maybe try the smaller weekly doses instead, that may help.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | 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 | I had a port and it was very helpful. I hate getting stuck and a port made things alot easier. 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: 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 think ports should be standard. That's the ONLY thing I regret not having for my Tx.
#Cheryld...I had excellent no hearing issues pre Tx but I ended up with permanent hearing losses which do not require hearing aids but do affect my hearing 24/7. I noticed this ringing stuff after my 2nd and was switched to Carbo as my MO said "it will make no difference". Of course that was 7 years ago and as we all know everyone can be different and we all know the NUMBER one, two, three goal of this Tx is to kill the cancer but I would still question the MO because my hearing issues are no fun.
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 | I' m still not completely comfortable about using the cisplatin again but hopefully a lesser dose administered over more time will be ok. I guess I will find out after the next one. 3 weeks done today. It has been really difficult to eat or drink this week. I found out I have thrush and am taking Diflucan. I hope this helps. My RO discourages having the PEG, But there is no way I can get enough nourishment the way it is now. I have unknown primary and they are radiating pretty much the whole area. I don't know if this makes it harder for me than most. Oh, back to the chemo, I've done some research and there are a few drugs, allopurinol and ebselen that have been tested in rats that reduce ototoxicity and nephrotoxicity from cisplatin. They are antioxidants, so they may interfere with the chemo.I guess I'm just reaching hear.Does anyone know anything about this?
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 | Re the calories get Boost VHC which packs a whopping 560 cals in each small 8 oz can so just by drinking 4 or 5 of those and you can reach your daily goal. Another thing to consider as an alternative to the PEG is the nasal tube. I had one painlessly installed post Tx and used it for 2 weeks and it really helped me walk out of that damn tunnel.
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 | I've had a bad case of thrush since last week. It is very painful to swallow. I haven't been able to meet the nourishment and water min. req. I had a picc-line put in today. 2nd chemo tomorrow, cisplatin, lesser dose than first. I would think it will be harder on me due to lack of nutr. and water. They will give me more fluids to begin with. I am having a PEG inserted Wed.
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: Oct 2013 Posts: 3 Member | Member Joined: Oct 2013 Posts: 3 | Drink. Drink. Drink. And then drink more. I made a HUGE mistake by quitting eating and drinking as soon as I got my PEG. Keep drinking even if you puke. It IS painful to swallow, but more painful is NOT being able to swallow after your treatments stop; I know this first hand. I was told to keep drinking but I didn't listen. I was a fool. Keep eating and drinking through the pain. When you get a few months on the other side of treatment you will wish you had. I was so drugged for pain I wasn't thinking clearly and didn't really do what I was told. KEEP hydrated! You CAN do this! | | | | 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 | We try and remind people often and early about continuing to swallow with the PEG as these swallowing muscles seem to have the ability to forget their function through no use. Their is a percentage of PEG users that become lifetime dependent on them and not being a doctor I can't say for sure why but I have been told that not using them is a factor.
Please tell your docs that you are not hydrating yourself adequately and that they need to administer fluids NOW. Believe me you do not want to become constipated on top of everything else you have to deal with.
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.
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