| | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | It's still a long, slow climb -- Like the microwaved food, we keep on cooking for a while -- Coming in out of the sun is good, but that sunburn is still working -- It's a surprisingly long process, but one day you realize you've felt better for the last couple of days than in a long time and realize you really have crested the darn hill!
Don't expect miracles, slow and steady is how the course goes!
Since my recent surgery I'm back on a PEG with instructions not to swallow (barium swallow test this week, so hopefully that will change), so I don't carry water with me -- I feel kind of naked without it because I've had at least one water bottle with me for the last couple of years.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 83 | congrats!!! Like others have said...it will be a couple of weeks before you start to feel better, hang in there..it will happen.
Keep your fluid intake and nutrition up..if you can get pills down, I doubled up on my vitamins and zinc to help get things normal again. But, it will take time...best wishes.
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
| | | | | Joined: Aug 2008 Posts: 1 Member | | Member
Joined: Aug 2008 Posts: 1 | Dear Stephanie,
Try Honey in water, say a lot of it about 4-5 tablespoonful in a glass of water. I bet youll be able to drink it without any problem and also it will give you the needed calories and energy and clear the mouth from all the stuff and refresh you.
And yes! although it will take a while to clear everything, you'll recover preety fast (u'll feel better each passing day and feel the diff too)
Just Cheer Up dear !!!!
Best Wishes
Rohit
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | I am officially one week out of treatment!!!!
I will have to try the honey in water (I can't taste sweet though so I don't know how it will taste). My ulcers are getting better slowly. I was able to drink a glass of tea today - and taste it (I didn't put sugar in it). It just loosens up everything in my throat so then I have to go spit mucus out in the sink for a little while after! I had about three days this week that I spent mostly in bed, but I have been up and about the past two. Apparently my blood work Monday showed I was slightly anemic and my white blood cell count had gone a little further down from the week before. I will have more blood work this next week to check my counts again. But I'm feeling good now and I'm noticing a few slight changes for the better. I'm hoping by the weekend I'll be able to down some soup and smoothies or something but I'm taking it slow! I want my ulcers gone and my throat healed up before I try too much. Also, my skin from the radiation is almost healed up! I have a couple spots left, but that's about it! So I'm definitely on the mend!!! Thank you all for the advice and encouragement!!!
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,
This is so good to read! I have 7 rads, and 1 chemo infusion left - yes! the end is in sight, or as my mother says, I can smell the hay in the barn.
I'm so glad you're on the mend.
- Margaret
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: 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 | Stephanie: You are doing great!!!! Its so good to hear that you are making such fast progress in recovering. Have you tried chocolate milk? I found that wouldnt burn my mouth and was high in calories. 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 | Also try Carnation IB VHC which packs plenty of calories in a small can so more bang for the effort.
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: 228 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | Margaret- it's probably just the burning from the radiation your smelling, not the hay in the barn! Just kidding! It's so exciting that you are almost done! Hang in there!
Christine- I bought some chocolate soy milk today, I'm lactose intolerant, so it's soy for me, which is fine, because I really like it.
David- I have been doing the 2calHN down the PEG, I only have to do 4 of those a day for my calories so it won't take much effort when I start drinking them. I tried the 2cal before I had my surgery and my only complaint was how thick it was so I guess I'll be thinning it down some with soy milk so it may not matter much that there are so many calories in a small can!
I bought some different teas today, one with honey, and it is sooo good! Does anyone have any suggestions for juices? Apple juice is a little rough on my throat, even cut with water, but I know it is kind of acidic. Any other suggestions? Juice is the one thing I have been craving.
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 |
Stephanie:
I use the 2cal also. Never have tasted one drop, only put it down my tube. To me, it has a bit of an odor like any other of the feeding formulas. I thin it out with water.
The fruits that arent so acidy are pear, peaches, apricot, and banana. When I started treatment somebody recommended the FUZE drinks to me. That might work for you. I think there is a mango peach one that should be ok.
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | It does smell bad doesn't it! I had to switch to the butter pecan flavor because I threw up the vanilla too many times early on that I could not stand the smell of it anymore! Thank you for the juice ideas! I'll have to get to the store and see if I can find any of them!
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****
| | |
| Forums23 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
