#68447 01-26-2008 04:17 AM | Joined: Sep 2007 Posts: 18 Member | OP  Member
Joined: Sep 2007 Posts: 18 | Hi everyone! Well, it's finally over! It's hard to put this whole ordeal into words. As everyone had promised, it was pretty brutal. I thought I was doing pretty well for the most part. The pain was manageable. Then the nauseu set it. The muceous was so thick it was causing me to gag.I was vomiting so often I was afraid I wouldn't be able to keep anything down. Finally, with a combination of drugs and mouth rinses the vomitting subsided, but I feel like I'm always on the verge. But, the pain is so bad now. I started with a .25mg patch 3 weeks ago, but soon that wasn't enough and increased it to .50mg. But, then the nauseau came back so my Dr. wanted me to back the patch down to .25mg. I'm adding liquid oxycodon every 4 hours, which helps a little also magic mouthwash helps a little. I am just getting over thrush too, which only made the pain worse. I feel like I'm in a funk.
So, I'm 2 days out now and certainly feel worse, just like I heard I would.
I'm sure that light at the end of the tunnel is out there-somewhere.
Jenna,46,non-smoker,non-drinker
diagnosed SCC tongue 9/18/07
patial glossectomy 10/22/07
IMRT ends 1/24/08
PET scan 4/16/08-all clear!
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Congrats Jenna,
I know you are glad to have the treatment grind over and pretty soon, you will start crawling out of the tunnel and into the light. Just know that it won't happen quickly enough! Try to remain patient and continue getting good nutrition and hydration.
Good luck on your recovery, 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Jenna, I'm glad the treatments are over and hope you get over the sickness real soon. I will be following your post to help me learn what I will be going thru very soon. The liquid hydrocodone is pretty good stuff to take every few hours for relief, sometimes I might take a little too much and get a happy feeling LOL You are in my prayers.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Jenna,
Tough it out for a little while longer and soon you will be walking out of that tunnel for good. Most of us had our worse times from now to about 2 weeks from now but the end is near even though you can't see it just yet.
Now, more than ever, it's important to get as many calories and water into your body as possible. I know it's tough but please try to do it.
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: Jan 2008 Posts: 82 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Jenna,
Hang in there girl, this is where your comeback begins... just use the pain meds and go from hour to hour. The time will go by quicker than you can imagine, but just remember this is the beginning of your comeback. Congratulations on achieving this milestone. Do whatever you can to keep up your nutrition, and remember a little extra vitamin C never hurt anyone... I started doing the chewables through my PEG early, early on. I really believe it helped my mouth heal somewhat quicker. God bless you and yours... we're fighting for you. Take care.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | 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 | Jenna:
Im glad your treatments are over. Next couple weeks will be rough. If you can eat, do it and drink lots or at least put lots of water in the PEG. Get lots of fluids and your calories in. At 3 weeks post treatment is when I ended up in the hospital for dehydration. I let the nasuea get the best of me and more came out than went in. Try to take your anti-nasuea meds on schedule before the nasuea sets in. Robotussin will help cut the mucous. Hang in ther it will be better soon.
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 2007 Posts: 16 Member | | Member
Joined: Sep 2007 Posts: 16 | Jenna, congratulations on making it this far. You're doing fine. I cannot add any more than what the others have already posted here; just get as much nutrition and fluids as possible, plenty of rest, some mild exercise activity, and remember THINGS WILL GET BETTER! I'm 2 months out from completing radiation... things will get better, so you hang in there.
Tom Alexander
SCC Stage IV BOT, completed 35 Tx TOMO & 7 Tx chemo Taxol + Carboplatin 12/04/07. No surgery.
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Congratulations Jenna---things will get better in the next couple weeks. Keep up your fluids!
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2007 Posts: 64 | that was my problem to i couldnt or should say wouldnt listen about the water.so i had to go 2times a week even after my rad for fluids .still need to drink more besides my coffe all the time im 5mos out
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | | Joined: Jul 2007 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2007 Posts: 30 | Jenna, it does get better! I was back at work a month after treatments ended. Last 2 weeks of treatment and the 10 days after were the worse but I really recovered quickly. I know it is different for everyone but hopefully you will be back soon. I do vividly remember being in that dark tunnel. I forced at least some food down my throat each day but put lots of food and water through the PEG. Hang in there and I be praying for ya!
Bruce
Age 57 SCC Stage3 BOT and 1 node PEG 35RADS
7CHEMOS Tx over 9-17-07 tube out 10-12-07 back to work 10-15-07.
| | | | | Joined: Oct 2007 Posts: 35 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2007 Posts: 35 | Jenna,
I haven't been online in a long time--I'm glad that you've finished up and most likely now are well on the road to recovery. Hopefully, much better days are ahead! | | |
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