| | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 |
I finished my treatment in Sept and just had my first follow-up PET scan/all clear/dr. says I'm doing great!
Just wish I were more interested in eating/nothing really appeals to me, and eating seems a chore. Well, I know I have lots to be grateful for and I will focus on those things.
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | 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 | Congrats on the clear scan!!!! It takes a while to bounce back. All you can do is try your best to eat. If something doesnt taste good today, try it again in a couple weeks. 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: 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 | Susan,
You will get better and as your saliva and taste improve, which I think go hand and hand, everything will get back to normal. I really didn't notice any improvement in my saliva/taste until my 4th month post; then at 5 months a tad better but it wasn't until my 15th month post that I really saw a big improvement. Yea eating was not fun at first but as your saliva improves it will come back. I stuck to anything that I could find enjoyment from like pancakes and soft eggs with plenty of syrup lol, TV dinners with plenty of gravy stuff. Forget the fat, in fact GO FOR IT. The fattier the better. I also drank a can of Carnation Instant BK VHC with each meal mixed half n half with whole fatty milk just to make sure I was getting those all important calories. I tried to get 3000 every day and I didn't gain a pound my first year post so that tells me my body needed every calorie.
Hang in there, it will only get better from here on out.
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: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Susan,
I finished my treatment on 6th Sept so i'm going in for my Ct next week. Yep i'm having the same problem with regards to taste. I found home made smoothies with inseason fruits, full cream milk and add 2 tablespoon of milk powder for extra protein and calories. This is not just nutritious, and healthy but it goes down pretty easy. Frozen berries and mangoes in the smoothies are really good too. I made a choc, banana and peanut butter shake the other day and that was quite good!!! Hope it all improves soon for you and me!
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Susan - congrats. That's a terrific achievement!
Yeah the eating thing can be a drag. No appetite, throat hurts, mouth hurts. And did I mention no desire to eat? I would follow everyone's advice here. It never hurts to keep a good supply of the liquid nutrition product of your choice around, just knock one back whenever you can.
Hang in there - you're well on the way back now!
D2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | congrads on the all clear!
Yes eating can be a challange, even after a year I still have some issues!But it has gotten SIGNIFICANTLY better. I trthink I would have a good jump every month or so. Hang in there, you will love a big meal again!!
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Congratulations, Susan. Here's hoping all your future PET and CT scans will be clear. As far as eating, just keep trying different things and eat as much as you can, whether you're hungry or not. Even after almost 3 years, I still have no appetite, but eat as much and as often as I can. Everyone's different with their after effects, so just keep on doing what you can and hopefully your appetite will return. Congratulations, again.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2010 Posts: 201 | Yay Susan!!! Congrats on the clear scan. I read somewhere on here about taking Zinc everyday to help move along your taste. My sister has been taking it everyday and her taste has come back pretty decent. She finished rads 10/11/10. Something to consider.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
| | | | | Joined: Sep 2009 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 96 | Congrats. I pray that they continue to be and you are free of this from now on. I have not really eaten anything in almost two years and most things that I do taste are way to sweet or acidic. Keep trying.
31 at dx 9/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
HBO for ORN March & April 2010
Fibula flap 5/10
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