| | 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 | Buster, some patients need to use a suction machine during their recovery. It will suction out all that gunk and you will feel so much better with that stuff out of your system. When I was recovering, I had all that gunk too. A couple times I was choking so much I really thought I was going to choke to death on that stuff. I would pull it out of my mouth with my fingers. Then one day it disappeared, just completely gone! It was replaced with dry mouth. I had to constantly take small sips of water and carried a water bottle with me everywhere I went. Nights I used a humidifier and the biotene gel which coats your mouth so your tongue doesnt get stuck while you are sleeping.
All these things are normal and part of your recovery. Have a long talk with your MO, RO or ENT. Im sure they are very familiar with everything you are experiencing. They will be able to prescribe the suction machine for you. Keep up your nutrition of minimum 2500 calories daily and 48 oz water. This could be why you arent feeling much better yet. The better your nutrition, the better you will feel.
Best of luck with your continued 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: Dec 2010 Posts: 23 Member | | OP Member
Joined: Dec 2010 Posts: 23 | I have not posted in a while, so here's an update. Four weeks after radiation was completed the VA did a CT scan. The good news is the tumor is gone, however I had one lymph node on each side that was enlarged. Both lymph nodes decreased in size, however still enlarged. The VA wanted to schedule surgery. I decided to get a second opinion. I went to Moffitt in Tampa. The Doctor there said it was too soon to be talking surgery. She wants me back mid June for a Pet scan and consultation. Glad I went there. As far as the recovery process, the mucus problem is 90% better. The sore throat is up and down. I will have very little pain for a few days and then the pain increases for a few days. This problem is preventing me from taking food by mouth. Hopefully the throat will continue to heal and I can get off the G tube.
60 yro male, non smoked, moderate beer drinker, active, overall good health
dx 110310
biop 120910 SCC BOT RT T3 N2C MO
bone scan 010411
rad 011111
pet scan 011211
chemo 011311
port 011411
peg 012100
Treatment Gainesville Fl Va & N. Fl Radiology / Oncology
| | | | | 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 | Did you see Judy McCaffrey?
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: Dec 2010 Posts: 23 Member | | OP Member
Joined: Dec 2010 Posts: 23 |
60 yro male, non smoked, moderate beer drinker, active, overall good health
dx 110310
biop 120910 SCC BOT RT T3 N2C MO
bone scan 010411
rad 011111
pet scan 011211
chemo 011311
port 011411
peg 012100
Treatment Gainesville Fl Va & N. Fl Radiology / Oncology
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | You are in good hands my friend. She is a straight talker and will tell you like it is.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Buster...just caught myself up on this thread. Sorry to hear your healing is taking so long..that certainly is frustrating.
Glad to hear you went for a second opinion too..I'm a huge fan of second opinions. I didn't decide on a doctor until I met with 3..they all said the same thing so I went with the nicest:)
I'll be keeping you in my thoughts..hang in there.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Dec 2010 Posts: 23 Member | | OP Member
Joined: Dec 2010 Posts: 23 | Second opinion from Moffitt was great. Had a Pet scan 6-15. Dr. J. McCaffrey stated that she was not concerned at all with my lymph nodes, did not think a neddle biopsy was even needed. She did say she saw something in my throat area that concerned her and wanted to do a biopsy. I had the biopsy 7-8 and received the results yesterday, Negative! Now maybe we can work on getting rid of this sore throat.
60 yro male, non smoked, moderate beer drinker, active, overall good health
dx 110310
biop 120910 SCC BOT RT T3 N2C MO
bone scan 010411
rad 011111
pet scan 011211
chemo 011311
port 011411
peg 012100
Treatment Gainesville Fl Va & N. Fl Radiology / Oncology
| | | | | 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 |
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: Dec 2010 Posts: 23 Member | | OP Member
Joined: Dec 2010 Posts: 23 | I have not posted for a while, so here is an update. I started actually feeling better in August. I did not realize how bad I felt until I started feeling better. The sore throat is much better, still some discomfort, only minor. I am now taking about 50% of my calories by mouth, the goal is 75% by the first of the year. Eating is very difficult, as with this whole process, improvement is ever so slow. If I reach that goal we are going to do another swallow study,and if all goes well remove the PEG. Next check up at Moffit is 01/25. In short things are good and improvements continue.
60 yro male, non smoked, moderate beer drinker, active, overall good health
dx 110310
biop 120910 SCC BOT RT T3 N2C MO
bone scan 010411
rad 011111
pet scan 011211
chemo 011311
port 011411
peg 012100
Treatment Gainesville Fl Va & N. Fl Radiology / Oncology
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Buster,
I also go to Moffitt your in good hands. Glad your feeling better.
Take care,
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
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