| | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 92 | Few issues still there but I am feeling and doing great this week.
Seems what had me down a few weeks ago was a fungal infection, its amazing how that little infection can affect you and how bad it can make you feel. Since I finished my antibiotics there is a world of improvement in all areas.
I started noticeably producing saliva again over the weekend, I know its not much but it feels like a waterfall at times to me! It comes and goes, I hope it continues to improve.
Eating has improved, desire to eat is usually still not there. But I went to lunch today and for the first time since treatment enjoyed my meal instead of it being a chore. I had the "endless shrimp" and I ate my moneys worth! 3 rounds of shrimp scampi, coconut shrimp, shrimp linguini, salad, and baked potato. I had some help and have enough left over for another meal but it was by far the most I have eaten since treatment began.
The pain is so much better, I decided to try to cut back my pain meds. Now I have to deal with withdrawal issues. I cut my pain meds in half yesterday, I was up to what I consider a pretty significant amount to get through the day. I woke up this morning feeling like I was coming down with the flu, aches, sweats, shaking, and stomach issues. I felt all better after I let my morning pain meds kick in so I know that getting off the opioid is not going to be a pleasant experience. I still need them but not the amount I was up to so I will slowly try to cut back and I will def be talking with my RO about the easiest way to quit them. Any suggestions?
I still have to be careful, I think I have 2 speeds, feeling good and overdoing it or wiped out. I have had stomach issues a few times at night but I think I have figured out it is self induced. Its always on nights I work in the yard in the heat. Still trying to learn that just because I feel great doesn't mean I can do what I was capable of doing 6 months ago nor should I attempt to.
For any of you who are going through treatment........... It does get better! There were times I was doubting I would ever feel as I good as I do today but it is happening, I am greatly improved. I am staying positive and hoping things continue to get better. I am sure I will have my down moments again but fingers crossed.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Rosy,
What a nice report, sounds like you are doing really well all things considered. Weaning yourself off the meds is a process you do not need to rush. Do as you did, cut back some and wait and see how much discomfort you are experiencing. If too much, add some back, even back to where you were if needed. The next day cut back less and see how it goes. If you can suffer a bit do that as that will get you off faster. Just make sure you are not suffering too much pain. Your body will tell you how much medication is needed to cover the pain.
I just noticed you finished rads just a couple days ahead of me. Guess we are classmates of class of summer 2013. :-)
Last edited by donfoo; 08-13-2013 04:59 PM.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jul 2013 Posts: 33 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2013 Posts: 33 | From another classmate (finished July 5), sounds like a great report. Does that mean you have a decent sense of taste and if so when did that come back?
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin).
Tx completed 7/2013
MND 10/2013 (Pathology Negative)
Debridement for minor ORN 7/2014
| | | | | 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 |
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 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 |
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 92 | Jasper, I don't think I ever completely lost my taste, maybe for a few weeks at the end of treatment. I do remember that things did not taste right the first 2 weeks after treatment, everything was salty including water. Now some days its normal and some days I can still taste but the taste are weak. I think I was very lucky that way. There were several weeks (probably about 6) I could not swallow anything but water so I can not tell you for sure what my taste buds were like then.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | That's a great report and update!
Really glad to hear it!
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 92 | Another milestone. I had my PEG removed yesterday. It hurt for about 3 seconds I yelped, little sore today but its gone!! Twice now I have reached up to touch it out of habit. It was very nice getting dressed this morning and not having to think about a place to tuck it and a shirt that would hide it.
I keep on traveling and checking off things from my cancer to do list!
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | That's great. Although it saved my life, I hated that thing. For me it ment I was no longer a cancer patient. Just a guy with lots of doctor appointments.
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: 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 | Woo-Hoo Rosy!!! Thats quite an accomplishment to having the tube removed. Congrats on making such excellent progress!!!
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  | | |
| Forums23 Topics18,235 Posts197,106 Members13,293 | | Most Online1,788
Jan 23rd, 2025 | | |
|
