| Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Kevin was on a low dose of Diflucan the entire time. Never got thrush. Just a thought.
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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Hellion I bought a Waterpik today based on the other comments. Brilliant. Highly recommend it. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Oral Thrush, a yeast infection or candiasis, is very common, and thrives on sugar, alcohol, yeast, so limiting them may help, and boosting your immune system since it's an oportunistic infection, not contagious, being your body can't make a balance of the naturally occurring candida in everyones bodies, that basically went out of control. Also, the usual treatment, besides home remedies, proper oral care, is local treatment with antifungals first, like the nystatin, so you don't develop drug resistance. If it goes further, it's treated systemically, usually with the zole medications like clotrimizole, flucanizole (diflucan), etc. it's easily treatable, if treated properly, if not, it can invade the esphogus (esphogitis), stomach, and go into the blood stream from there or through the gums, mouth ulcers. Once in the blood stream it's called invasive or disseminated candiasis, and difficult to treat, intraveniously, and can be deadly, up to 40%.
Probiotcs are often recommended by some doctors, some may not with a compromised immune system, like cancer, which can be dangerous some reports say, but in healthy people it may be ok.
In addition to the WaterPic, my radiation center sprayed my mouth everyday before or after radiation, and that help with the Mucocitis and oral thrush.
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: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | Ah yes, the WaterPik (TM)! I love this thing and have been using it since I started. I mix in a half teaspoon of baking soda and put it on 1 or 2 and let the water dig around in all the gums then I try to jet off any of the sore and icky bits from my mouth, cheeks and gums. Hurts like hell, sometimes, but I do get to see those lovely slimy bits of sloughs skin and blood hit the sink in tiny, satisfying little droplets!
My number one life support caregiver (my ridiculously lovely, patient, remarkably spectacularly beautiful wife) ordered the tongue scraper today -- We didn't know that existed.
As always, she's there and she's so spectacular and now she has to put up with a rather moody (if I'm honest) rather unpleasant patient. It's so not fair and I hate that I sometimes snap at her. I don't mean to take any of this out on her, but my patience is not always what it once was, and, if I'm also honest, it was never my best trait.
So thanks for all the advice. The thrush mess seem to be helping a bit, at least the Rocky Mountain Mouthwash no longer brings me to tears after my brushing/WaterPik (TM) adventures. No it just makes me whine like a puppy. Hopefully a couple of more days of the medicine and it will be more under control.
Monday is chemo round 2. Wish me luck!
The Hellion
SCC Base of Tongue Diagnosed 3/5/2014 T2N2C PEG Installed 3/19/2014 Chemo/Rad 3/27/2014 1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy Chemo FINISHED 5/5/2014 Rads FINISHED PEG tube removed 10/08/14 Back to work 4 Aug full time 1/19/15 - diagnosed mets to lungs 7/17/15 began Pembrolizumab clinical trial demitted October 2015 1/14/16 began Tremi-MEDI trial -This far, no further! On ne passe pas!
**update** passed away 3/26/16 RIP, you will be missed by many
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Ditto - go waterpik. Warm water - mix in baking soda AND salt. Let dissolve and use. it WORKS
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Hi Hellion,
You might want to print out your message (just above Donfoo's) and leave it for your lovely wife to "find"...
Happy Easter, brother, and I do wish you the best of luck for you upcoming second round of nobody's favorite chemo!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | I got snapped at too. We understand, trust me. We cry in the shower....since we are sharing secrets..You are in this together. Sounds like she is rocking the care giver job and you are handling things as they come the best you can and that is all anyone can do. Good luck tomorrow. Buckle up for the next week. Will be thinking about you. Write when you can!! 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: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | OK,
Chemo 2 today and another treatment change. Given my side effects to Cisplatin (primarily severe Tinnitus which has faded but still comes and goes in severity), my chemo oncologist has determined that I am one if the not small percentage (I think I heard an estimate of 25%) of people that are incompatible with Cisplatin. We talked about it a long time, and she simply feels that the level of long-term, probably permanent side effect render that drug off the list. For my part, I think I can take the pain, but at the same time, I know that severe Tinnitus has driven real people really mad, even being attributed to severe self harm and suicide.
So...I know I won't commit suicide, but I think my cancer team isn't so sure and wants to play me with kid gloves. So there it is. Hearing loss they feel we could risk, but tinnitus, in this cancer care team's eyes, is too risky.
Please don't interpret the above statement as sarcasm, by the way. My wife and I have done a lot of research, but we are not experts. Before they made this decision, I met with another ENT, two audiologists, my chemo oncologist and I know they all consulted with my radiation oncologist.
What it means is I have been switched from 3 large Cisplatin doses every 3 weeks to weekly smaller doses of Carboplatin and Taxol (or something like that. I don't feel like digging out the paperwork they gave me again for the exact name). They feel better about the side effects and believe it will serve a similar cure prognosis. I asked about Cisplatin and they said they lean that way because it has a better clinical track record, or at least a deeper one, but that this is not unusual, and if a patient is incompatible with Cisplatin, well, then they just are.
What I'm hoping is that this doesn't jeopardize my treatment or my long term cure. I hate that I'm not in the best weapon system. That said, I guess my body isn't built for Cisplatin. Though it hurt like hell, I handled the nausea, general sort of achenes and mind numbing ringing/cotton head. The last symptoms, however, make my team of superbrains uneasy. I've seen I here that I'm not the only one that has received Carbo/tax in exchange, so I'm hopeful. I can say my chemo oncologist had no major concerns about my chance for cure.
So there you have it, turns out I really was too weak for Cisplatin.
On the up side, the treatment went well today. As before, my wife sat with me, held my hand, read her book while I slept, picked up my new srcips and generally made me feel like a very pampered guy today. As always, I'm so grateful for having her in my life!
So, anyone have any opinions? Did I get pushed out of the best because they're being too cautious or did I get moved to a solid alternative because the potential lifelong side effects are simply too dangerous? As I told my chemo oncologist -- I'll take whatever I have to to cure this filth. She assured me this will do the job. She is, like me, convinced that I walk away from this scarred and changed, but cured, so that's nice!!!!!
So far the side effects are better than the last time, so that's good. I have to go every week, though, for 4-6 hours, so that sucks. Although I whine a lot about the pain, etc, I have no intention of letting ANYTHING stand in the way of a full on cure.
I'll add more to this tomorrow - need to get some more sleep.
The Hellion
Last edited by TheHellion; 04-22-2014 02:27 AM.
SCC Base of Tongue Diagnosed 3/5/2014 T2N2C PEG Installed 3/19/2014 Chemo/Rad 3/27/2014 1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy Chemo FINISHED 5/5/2014 Rads FINISHED PEG tube removed 10/08/14 Back to work 4 Aug full time 1/19/15 - diagnosed mets to lungs 7/17/15 began Pembrolizumab clinical trial demitted October 2015 1/14/16 began Tremi-MEDI trial -This far, no further! On ne passe pas!
**update** passed away 3/26/16 RIP, you will be missed by many
| | | | 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 had the Big 3 Bag Method of Cis and I ended up with permanent hearing loss. It isn't bad enough to warrant hearing aids but it is a nuisance. Remember I had my treatment 8 years ago so I hope a lot has changed at least in the doctor to patient communication but I remember telling my MO about the buzzing in my ears after my 3rd Cis and he said "I wish you had told me because I would have swithed you to Carboplatin which is just as effective but won't cause hearing loss." To this day I'm stunned by that comment.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | It happens. As I said in many of my posts, chemo can mess you up sooner, worser than radiation to some extent, and is not to be underestimated. It's good your doctors were monitorng you, and switched to carboplatin, taxol, although they are all poisons, have side effects. Carboplatin will be given by your weight, I had 100mg, and the taxol may be low dose. I had 5 days high dose TPF Induction chemo with Taxotere, Cisplatin, and 5-FU in 2009, which in one week is more chemo than is given in 7 weeks treatment. The bad part with this is once it is given you can't take it back, adjust, change, and I was one that had a bad side to it on the 6th day when I went home, and lucky to have survived, but it prevented me from further treatment, even other chemo's for years, and still suffer it's side effects, some which are permanent. The same with the three large bag Cisplatin some do not get the 3rd bag, and even the weekly cisplatin some do not complete the last one or two. I had Erbitux and Taxotere for another treatment with radiation in 2012, and after three weeks the Taxotere was stopped due to worsening my neuropathy, anemia. You also have to watch out "hand and foot syndrome" eye infection due to blockage of tear duct with Taxotere, and is more likely to cause hair loss, thinning than Cisplatin or carboplatin do, but grows back. My last treatment in December/January, I had carboplatin with radiation, which was easier than all the others for me. 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
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