| | Joined: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | OP  "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | David,
You are very kind and supportive. We all need some support here and there to get us through this fight with the terrible disease. They say the most important ingredient is a positive attitude which I am doing my very best to maintain.
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Joseph I may have missed what chemo they are planning for you, but I would strongly encourage you not to let them gamble with your life with Erbitux. I did and I lost that bet. Carboplatin is less damaging than Cisplatin yet being platinum based still does the trick on oral cancer tumors. Bear in mind, I am not a medical doctor and this is just my opinion based on my personal experience ( although my MO ditched the Erbitux for my second TX since in his opinion, if the Erbitux had done its job, my cancer would not have come back. He's working on a test to identify the 50% of us for whom Erbitux is worthless but so far it's just luck of the draw.) Keep up the good attitude and you will do fine Charm
Last edited by Charm2017; 05-20-2012 11:15 AM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Hi Charm,
Thank you for that important piece of information. I have not been told which type of chemo yet. I guess it will be discussed when I meet the chemo oncologist. I have heard from other posts that say the same thing that carboplatin is less toxic than cisplatin. I will do more research and push in that direction with the oncologist..
I plan on coming out of this in one piece and have complete recovery.
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | 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 | Hi - you had a very similar cancer to mine I would bet that you're getting cisplatin, hence the hearing tests. They do the big doses at PMH - the small ones for this type of cancer isn't the protocol, but they may do if you ask them. That just means more time in the hospital. But with your medical history it might be more wise. Try adding protein mix to your feed it will help with strength and healing. - you'll get through it. Okay think positively !
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: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Hi Cheryl,
It is sounding like cisplatin but I will know for sure when I have the radiation planning meeting with the chemo oncologist. I hope I will get through it without the side effects being too strong.
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Joseph,
My husband had Cistplatin, 5FU and Taxotere. He has partial hearing loss now and we are pretty sure it is from the Cistplatin. Just an FYI to watch for, but it works, so we would rather have had IT and get a hearing aide!!
Best of luck to you in this journey. We are all here for you!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Hi Kathy
Thank you for sharing your husbands experience. Other than the hear loss, did he have any other serious side effects such as kidney damage? How much hearing did he lose? Does he need hearing aid now?
I am concerned with hearing loss and also kidney damage because I have been diabetic for over 20 years so I also have loss some kidney function.
There was suggestion that more smaller doses may be less hard on the body. Right now, they are suggesting 2 chemo, one at the beginning and one at the end of the 33 radiation Tx. I will bring it up with the oncologist when I get to see him next week.
Thanks!
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | 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 | Normally Cisplatin is given in 3 large doses every 3 weeks or smaller weekly doses. Many of use who have had the 3 large doses have skipped the 3rd one due to being too sick. Usually patients can tolerate the smaller doses much easier than the big dose schedule. Be very cautious of hearing loss and kidney damage as both are irreversible. Please talk this over in detail with your doctor.
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 | Goal #1 is to kill the cancer and keep the patient alive. Goal #2 see Goal #1. Nothing matters post Tx if you are not cured. That said you should inquire about the weekly bags of Cis as they seem to (soley by accounts from people on this site) produce less side effects than the old standard of the 3 big bag method or even ask about Carbo instead of Cis which, according to all the MO's I've talked to and I quote, "is just as effective as Cis but without the nasty side effects." This was first said to me 6 years ago and I've heard it throughout the last 6 years of recovery so it just baffels the mind (1) why a study wasn't done that prove or disproved this? and/or (2) why Carbo isn't used first, especially on HPV+ presentations?
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 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Hi Christine and David,
I completely agree that the whole point is to cure the patient and I do want to be cured. Having said that, I have gathered that there are several possible alternatives to 2 big cisplatin doses, smaller more frequent doses and cardoplatin. These are questions I sure want to ask my chemo doctor when I see him sometime next week. The appointment is still being scheduled. This being the long weekend slowed everything down.
Thanks!
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
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