| | Joined: Aug 2012 Posts: 56 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 56 | The remeron has helped me with my intake; had lost almost 12 lbs in two weeks when I went to my last follow-up appt, but since then 10 days ago) I have actually GAINED a lb--the first time that has happened since I started treatment in August. And it does get better: on Thanksgiving I was actually able to taste 75% of what I tried, and green beans and cucumbers were themselves most enough that not even my very dry mouth got in the way of enjoying some of those. Take care, and I will be hoping for a good outcome for you.
Ed H, NE Ohio
SCC BOT with lymph node involvement, HPV+, diagnosed 7/12
Radiation and Cisplatin
| | | | | 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: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | One more week, you are so close!
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yep you'll do it then you get you heal... And sleep. Hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jul 2012 Posts: 47 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2012 Posts: 47 | Well I thought I was doing 33 treatments and it turns out that it is 30 so tomorrow is my last treatment! I have been having so many dreams about food lately (guess watching the food network is not helping with that) but thank goodness for those VHC boost shakes - I seriously would be lost without them. I did not have a PEG so doing my best to swallow which is a bit rough. How long did it take you guys to eat solid food again after treatments stopped? Thank you all so much again.
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
| | | | | Joined: Aug 2012 Posts: 56 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 56 | My last treatment was 5-6 weeks ago. I was able to drink milkshakes within a week or two, but I was fortunate to have rarely had mouth sores or pain in general. I tried softer foods like sherbet thereafter, and solid foods first came about 3 1/2 weeks after the last treatment. Everyone is really different, however, but for me I have gotten a great deal of my taste back already--everything I tried on thanksgiving tasted as I remember it except for mashed potatoes. I notice that some flavors are still very exaggerated and thus tastable, but not palatable: chocolate, savory flavors like most spices, etc. The bigger issue for me is a completely dry mouth that makes eating anything that isn't inherently juicy very challenging unless I add water to my mouth as I chew (green beans and cucumbers worked best for me, meat and bread the worst). My intake is still about 90% boost VHC. Instead of continuing to lose weight I have gained back 1 lb by pushing myself to do more Boost and having milkshakes more often (a Steak and Shake chocolate shake is 630 calories). I also mix my Boost 50:50 with whole milk, making each one of those about 670 calories; I like it much better with the milk, as tastes better and is not so thick. Good luck!
Last edited by Ed H; 11-27-2012 01:43 PM.
Ed H, NE Ohio
SCC BOT with lymph node involvement, HPV+, diagnosed 7/12
Radiation and Cisplatin
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | I was eating solid regular foods a month after TX, but I did not get my sense of taste back until about 6 months after wards. I could not eat spicy foods until a year after TX but did not get to do that long since the cancer came back around the same time. I was able to get down spoonfuls of soup immediately after TX the first time and could eat soft foods which are technically solid not liquid within the first week after TX. Since you got through without a PEG, you have retained your swallowing so you should be back very quickly also. Everybody is different of course but ease into it. Christine has a list of easy to eat foods she shares. You can also try my CAT pie recipe Charm's Cat Pie recipe Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | My third week post Tx was when I asked my wife to go and get me KFC mashed potaotes w/ gravy, their mac n cheese and also pick up a can of Fruit Cocktail. It took forever to eat a small amount of each and I couldn't taste much but a huge moment was shared by all!
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 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Ditto on week three for Bill and the return of food by mouth. We were eating at a local restaurant and the proprietor realized that this was a "moment" for Bill and I. She brought more of the yummy soup Bill was eating for us to take home. Very nice!
We are still so thankful for a relatively quick recovery for Bill.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Oh Charm...I'm drooling thinking about the CAT pie Bev made for us this summer! Good lord it was good and I highly recommend it! I have severe dysphasia that limits eating most solid foods (my diet is over 90% liquid) but I could eat this and it was UH-MAZIN!
It still really bums me out when I see how people on the forums eat, especially using the meal replacements like Boost and Ensure and gaining "weight" based on calories consumption alone...but ce'st la vie.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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