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You could also consider a nasal tube for a few weeks. Simple non surgical, no pain "insertion" where they feed the tube up his nose into his stomach and then x ray to make sure it's in proper place. I used one PT for 2 weeks and pulled it out at home myself. Made a HUGE DIFFERENCE to my recovery.


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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Just an update- Tim is improving now every day! Yesterday he even ate some mashed potatoes with gravy, and a small bite of chicken. We just returned from the oncologist and he does not need to see him for 12 weeks. What a fighter this guy is!! He is currently at 170 lbs from his start of 184 lbs at the end of August. He is still taking extra strength Tylenol every 6 hours for "discomfort" but the nausea is subsiding each day, and taste is starting to change slowly. Sweets (especially chocolate) seems to be the strongest right now.
So..... THANK YOU ALL again for helping us through this, and your continuing support as we keep marching on in this journey!


Caregiver to Tim(Best friend and love of my life)55 years young!!
Small BOT SCC (HPV+) with mets to 2 large and 1 "cluster" of right neck lymph nodes. DX 7/2013
Treatment started 8/2013. Completed 10/9/2013 IMRT 70GY over 31 days X2. Cisplatin X3 No PEG.
PET Scan 1/15/2014 NO Evidence of Disease
5/18/2015 NED with follow up visits to oncologist and Radiation oncologist every 3 months.
Cautiously Optimistic and starting on the journey to recovery!
Joined: Aug 2012
Posts: 214
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Way to go Tim! Eating human food will make hugh difference both mentally and physically. At that time, I ate a lot of cream of wheat and soggy cereal and milk. His chewing muscles have taken a beating from inactivity ad rads. Have him keep stretching his mouth wide as he can, many times a day. He will need to do this for the next year or so.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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He's doing great and things will slowly improve but do watch out for some bad days mixed in here and there. They are very normal and are not to be considered a setback. Watch out for the chicken as that, especially the white meat. Try moist meats like ham steaks and do use gravy on everything. Calories and water are just as important now as they were during Tx.


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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I know its hard after treatment in that you KNOW you are done with it but physically you really arent't - hopefully he will heal quickly after the horrible two week period. He did very well up to now so it sounds like he will - hugs.


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
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This is the beginning of the 3rd week post chemo and radiation. Tim is making small improvements every day now. He has increased his protein drink intake, and is almost up to the minimum amount of calories that he needs. His throat has improved to the point that he can swallow fairly normally when drinking. AWESOME!! He is not taking ANY pain meds (except a Celebrex for arthritis).
He has tried to eat a few things but the taste is just not worth it. I have encouraged him to keep trying something everyday because you never know what might make the taste buds respond.
He is very tired and is growing impatient with that.
I am encouraged to see more good days than bad now, and he is taking more steps forward than steps backward.



Caregiver to Tim(Best friend and love of my life)55 years young!!
Small BOT SCC (HPV+) with mets to 2 large and 1 "cluster" of right neck lymph nodes. DX 7/2013
Treatment started 8/2013. Completed 10/9/2013 IMRT 70GY over 31 days X2. Cisplatin X3 No PEG.
PET Scan 1/15/2014 NO Evidence of Disease
5/18/2015 NED with follow up visits to oncologist and Radiation oncologist every 3 months.
Cautiously Optimistic and starting on the journey to recovery!
Joined: Jun 2007
Posts: 10,507
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Great news with the recovery progress! Its a long drawn out time full of frustrations. Recovery can take months. The good days will soon outnumber the bad ones and the fatigue will slowly fade away. In 3 more weeks, he will be so much better than he is right now.

Keep up the great job on swallowing and drinking!!! Milkshakes and smoothies work very well during this phase.

Keep up the good work!!!


Christine
SCC 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 smile
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Way to go Tim. You just passes the bottom and finally things will start to improve. Over the next month, things will improve a lot. I found that salt was the first taste to recover. I found myself wanted to taste anything so I ate a lot of salty stuff. For the next 2 months you are still in the Thrush zone so watch for that. Ask your doc's if rubbing his neck and throat is ok. I still have my wife rub mine and I find it help a lot.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Joined: Aug 2013
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Hi Everyone! I thought I should share some EXCELLENT news! Tim's taste buds are recovering every day! Right before Christmas he decided to sample all of the wonderful foods at a party and FINALLY he discovered remarkable improvement! For the past week he has been trying many foods and actually enjoying them! His weight loss stabilized at about 3 weeks post treatment for a total of only 15 lbs. With no feeding tube!
He is now having just some dry mouth, and hoarseness. The back of his neck is totally hairless (he has let the rest grow to cover the 4 inches of hair loss)and it is only apparent when the wind blows. LOL!! He will have a PET/CT in the next few weeks, and we are hopeful that it will be good news!


Caregiver to Tim(Best friend and love of my life)55 years young!!
Small BOT SCC (HPV+) with mets to 2 large and 1 "cluster" of right neck lymph nodes. DX 7/2013
Treatment started 8/2013. Completed 10/9/2013 IMRT 70GY over 31 days X2. Cisplatin X3 No PEG.
PET Scan 1/15/2014 NO Evidence of Disease
5/18/2015 NED with follow up visits to oncologist and Radiation oncologist every 3 months.
Cautiously Optimistic and starting on the journey to recovery!
Joined: Oct 2013
Posts: 559
Likes: 1
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Oh, I am so jealous of Tim's taste recovering. I only finished radiation last Friday, so my taste is still gone and I've got a mouth full of mucositis and rope saliva to go with it, but the throat feels okay and I can swallow.

But, what I would give right now to be able to taste the foods Tim just enjoyed.

I just read your thread for the first time and I agree Tim did great throughout it all. That's a real tribute to his strength and determination. It could have been so much worse.

I'm trying to get the hair on the back of my neck to growing again too.

take care,
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

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