| 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 | This is one reason why it is so important to write down your questions and have the medical team address them. You have a captive audience for a brief snapshot of time. Use it wisely but get your questions and concerns addressed before your appointment is up. Even if they are busy, it's better to get answers and direction.
Like David says, you have a long way to go on this journey. Hang in there.
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: 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 | Yes you both do have a long way to go but we will be there every second of every day and that's a promise.
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 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | Thank you all for the comforting words they truly mean a lot this is my escape to get on here and learn and listen to much needed Advise and knowledge from those who have been their! Done that! I really look forward to getting on here and reading the post and I must say I've learned so much I never knew before!! Thanks again friends
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | Joined: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | We're starting week 4 I think !! I had a question bought rads will the radiation affect the atnoids think that's the spelling my husband seems to sound as tho he's talking trough his nose ,, the chemo dr said only one more chemo and a half dose at that because he affected him for none days : he was sick the day he finished the first dose of chemo" he was told first time he saw chemo dr that he was to complete 3 treatments of chemo so I'm hoping this don't alter his ability to heal I've always though rads we're the most important .... "
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | 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 | He is getting the inside of his throat damanged by the radiation so it can easily affect his speech. Most of us lose our voice for a while. Mine lasted a few days and believe me my wife loved that period! She did give me a bell which she quickly hated that as well and to this day I haven't seen that bell since I regained my voice.
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 | Your correct, radiation, besides surgery, is the real cure for this cancer, but chemo acts as a radiosensitizer to make radiation work better. Depending on type of chemo that petcentage can range. Sounds like Cisplatin with 3 doses, which is the gold standard, plus chemo works systemically, and may get at any microscopic cancer, if any, outside the radiated field. Many do not go on to complete the 3rd infusion, even 2nd, due to side effects or may even do radiation alone, but the chemo may still be in the body to act as a radiosensitizer for a while.
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 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | Thanks David that was funny I'll remember that no Bell)haha And Paul I do think he may do a second dose of the chemo" but only a half dies is what the chemo DR advised the first really took a toll on him he starting to get the mucous in his throat I was thinking it was from the thick formula he's on the two cal " and I think that's the name of it it has like 475 more or less calories hoping we can fine a alrernative cure for this in the mean time
Thanks as always for the good advise and funny comments!
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | 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 | Try Boost VHC which has 560 cals in the same 8 oz can. I drank it room temp. Just opened a can and drank a can in a few seconds. He needs appx 2500 to 3000 cals EACH and EVERY DAY. He also needs at least 48 oz of water EACH and EVERY DAY. You must get the VHC either on line, like Amazon and be sure to use the OCF link or thru the phar dept at a store like Walgreens, CVS, etc and DON'T use that PEG unless ABSOLUTELY NECESSARY.
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 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | I'm going online to find that David and yes we're trying to stay away from the peg that's so true I've said since day one not to use the peg unless Absolutely needed all we do as of now is clean it everyday and keep it flushed ,, good this came up cause the nutritionist talk with us in May and she kept trying to push my Husbabd into using this and I had to jump in and say WHY? He's doing good with out we only got for the Just in case situation )and don't get me wrong here we will use when and if he needs it !! I thanked her for the concern if their was one : I told her not to dis courage my Husband, from eating cause all the chemo and rad: drs told us not to use the Peg ,,, unless needed .. And I think that's the very best decision!!
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | 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 | It is surprising that the nutritionst would encourage the PEG knowing that he was still able to swallow.
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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