| | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | You are almost done Margaret! Keep it up! My mouth sores really kicked in the week after my radiation ended and I definitely bumped up the pain meds and got some morphine and kept on top of it. I remember just balling in my doctor's office because I was just so sick of the ulcers and the mucus (and it had only been a couple weeks! I'm such a pansy!) I only have one or two left and I'm not quite two weeks out from the end of treatment. The mucus has subsided but I have the stringy nasty saliva which is driving me insane. It coats my mouth so I am constantly spitting it out and I can't wait until it calms down. I throw up most mornings from gagging on it (but I have a really sensitive gag reflex). My saliva was kind of similar to what it is now after my surgery so I'm hoping when I start eating a lot by mouth it will get better. You are almost done and that's really exciting!!! Hang in there!!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | 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 |
Margaret you are getting thru this so much better than I did. Im always happy to see people who are able to keep up their hydration and nutrition, it just makes it so much easier on them. Keep up the good work.
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 | Margaret,
I think you're doing fantastic.
Don,
Do what you can to get the water and calories down the hatch BUT keep swallowing during each day.
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 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Bad Omen again!
Tomorrow is Friday and I have 13 rad sessions to go.
I know when I had my 13th, that was also a Friday - so perhaps tomorrow is double jinx day -- sure hope not, but life is sure starting to get tougher every day!
Saw my ENT today and he warned me of real bad things lurking out on that last third of Radiation Road -- now just two "rad" away. Sounded like hords of hovering dragons.
I hope Margret is OK.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | 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 |
Don:
It was nice your doc warned you about the rough part still coming up. You have come this far, you can get thru this. Keep up the hydration and nutrition, it will help make it so much easier. Hang in there.
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 | Don,
I think you have to much time on your hands?
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 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Don, I am so close I can taste it!! Actually, tonight I'm spiking a fever - ugh! Talked to my MO and she called in an antibiotic. My blood work was nearly perfect on Tuesday so she's not too alarmed, but if it hasn't gone down by Monday, we'll have to take a closer look. Other than that, the fatigue has really caught up with me (although the doc suggested that could also be from whatever is causing the fever). Generally, I'm feeling a little like I got run over by a freight train. I cannot wait for this part to be over and for the healing part to start. My birthday is next month and I'd like to be able to celebrate it at least a little bit. 
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | Margaret!
You are so close! If it's any encouragement, I went out to dinner tonight (at a REAL restaurant) and I had some fish and sauteed mushrooms - two weeks out from treatment (I can taste everything except for sweet, so I had to pass on the desserts). So there is definitely hope for you to be celebrating your birthday in a month!!! Finish strong and I hope your fever goes away soon and get some rest!!!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Stephanie,
That actually is a huge encouragement!! Are you taking all your meals by mouth now? (I can't remember if you have a PEG or not?)
My mom has found a local farmstand and has been eating fresh corn on the cob every night for dinner and fresh tomatoes. I'm so jealous...
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Stephanie Two week out and going to restaurants! Wow you are so un-real. That must be Olympic Gold! I am eating some food again. At first it seems to taste normal then foul (so I swallow quickly). I have sweet and occasionally munch a sugar cookie. Margaret my dragon slayer I so envy and admire you and dread having to face the rest of radiation road you have traveled so bravely. I know with 12 more to go that I will break big time  and will be lamenting on the forum. But, it looks like this will be another decent week-end for me (with some help from Aquaphor and Biafine). Victor was online for a while; running 10 behind me, but I haven't seen him all month. I hope is OK. Come Monday, I think it is only me and him on this hard road and I hope it stays that way
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
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