| Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Tony, have you been drinking the aloe vera juice the whole time you have gone thru treatments? Maybe that is something that has helped you to keep the mucositis at bay for so long??? Not sure if there have been any studies done on its effectiviness, if it worked for you thats great! 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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hockey Dad....I thought I was the Thrush Guy! I hear you. It is a very memorable event indeed. I have battled it hundreds of times. Most people don't know but narcotics will contribute as well.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | So glad to see you really causing through this Tony. It is unbelievable.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | No Christine, I was very lax in my aloe vera consumption, I probably haven't even used 1/4 of the bottle, so it probably wasn't the aloe vera that kept the mucositis away.
And I haven't used any of the oxy they gave me either, so it isn't narcotic induced. I guess I've just been lucky; the RO certainly thinks so. But, it's here now, so I didn't escape all the painful side effects. Oral lidocaine does a good job of keeping it under control.
The neck skin on left side is tender, but no open sores; thank you Aquaphor; haven't worn a shirt with a collar in 2 months.
Merry Christmas to all.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Tony, you are one amazing guy!!!! Not sure how you managed your treatments so well, but Im happy to see you are just about finished. Maybe it was being so active that helped you get thru it easier. Having something to look forward to is always helpful. Merry Christmas 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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | I Am Finished -
Last doctor day yesterday, last treatment this morning. The doc has remained very happy with my results all the way through treatment. I expect it's due to the absence of most of the radiation induced side effects that I have been able to dodge.
The only painful side effect I have is moderate mucositis inflammation of the mucous tissues in the mouth. Mostly on the left side, I've had it about a week. Oral lidocaine mouth swishes 5 or so times per day have kept it under control. Doctor says it should be gone in another week, so total duration about two weeks.
Still have some sunburn on left side of neck, but no blisters or open sores. Aquaphor twice a day keeps that under control.
Still have no taste for food, hence little appetite. But doing Ensure keeps me from withering away to nothing. I ended up losing about as much weight as they would allow before wanting me to get a PEG tube. I'm not proud of that, but my belly hasn't been this flat in 10 years. I have been able to keep all my energy, needing only one nap a day on average, but more importantly being able to continue to do all the things I did before treatment. I really didn't have to stop anything. I think that is the major reason I haven't worried about the weight loss.
Taste should start returning over next 1 to 6 months. I've been told sweet typically returns first, salty second, both of those probably within next 2 months. Savory, what I'll need to enjoy that cheeseburger could take as long as 6 months. I hope they haven't been too optimistic on those numbers, if they have, oh well, cross that bridge when I get there.
Treatment went very smoothly for me. I know many of you had a rougher time of it, but it doesn't go badly for everyone. I think keeping a positive mental attitude (thank you Bart and others) and the ability to not worry about every little thing played a big role in the results. But, perhaps the most important thing is having all my friends there keeping up with how treatment was going, offering their help every step of the way and in general, just being there for me.
I owe a lot of people a big debt of gratitude. The words "thank you" don't even come close. I only hope I can help each of you at some point in the future.
In a week I will start an Immediate Post Treatment thread. Until then this thread stays open.
Thanks again
Tony
Last edited by n74tg; 12-27-2013 09:02 AM.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | What great news Tony! It's so important you keep sharing your smooth sailing experience for others to know as they go into this that there are so many like you. Unfortunately, as life resumes they don't spend a lot of time here. I'm so proud of you. Don't worry about time frames. You will feel things changing and adjust accordingly. Eat for nutrition now...the taste will return. Go eat that dang hamburger...well, just because. Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Congrats Tony!!!!
Im so glad to hear you are finished. You have done great!
Hate to be the bearer of bad news but there are still a couple bad weeks left. For most patients the worst part is the last week of rads and first 2 or 3 weeks of recovery. Radiation is still continuing to work just like you would be going to treatments.
I still think you are one lucky guy!!! Seems to me like you went thru this fairly easily, much easier than I did. Maybe you are just tougher than I am?
Best wishes with your recovery! 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 | Great Great Great!!! I found this site appx 2 weeks post Tx and I was compaining about my side effects and was surprised that everyone told me how GREAT I was doing, much better than them, etc but trust me you sound sooo much better than I was. Hope the next few weeks is uneventful. Re the taste I must say I think they are being waaaayyy to optimistic but let's hope their right. Just don't get concerned if your recovery takes longer than they are leadiing you to believe.
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: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 |
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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