#79404 08-26-2008 01:00 PM | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | It's not really that serious of a problem...if one at all.
After my surgery on August 13Th...my sense of smell has really improved...like dramatically improved. I'm not complaining...but some smells are so potent they make me feel a little nauseous. You name it...if it has any kind of scent/odor I pick it up...good or bad.
Have any one else experienced anything like this?
Another thing...calories...I've been on liquids since the August 13Th...And I just started eating some solids a couple of days ago, mostly soups...I find it very difficult getting to the 2000 calorie count...especially since I'm not as hungry as before...Ensure and all the others help...I just have to dilute them with milk...
Any suggestions? My biggest problem is the size of my appetite...it's just not there...Do I just stuff myself? My radiation treatments won't start until the 3rd week of September...so I have a lot of time to heal from surgery and get back to solids before the real work begins...
Thanks, Raymond
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | 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 | Ray,
After my rad was over, like in my 3rd week post Tx, I started drinking 5 to 6 cans of VHC. That alone pushed me close or over the 3000 calories mark and it may have been a coincidence but I also started to feel better. Now this was after concurrent rad and chemo but if you're trying to put on pounds before radiation, the extra cals won't hurt at all. Maybe getting a few extra cals might improve your appetite?
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Ray
Not directly responsive but here's a heads up: Radiation is going to totally quash any appetite you might regain so YES force yourself to eat now. I can sympathize with no appetite and difficulty getting down the requisite calories. Ensure Plus (extra calories) Vanilla worked the first 6 weeks, last two I had to go to Carnation VHC which I hated but at almost 6 hundred calories was necessary. Hang in there. There is light at the end of the tunnel. I eat everything now (except spicy food) that I ate before but it was a very sad birthday last year drinking a chocolate ensure in lieu of a cake. I was thrilled to have three tablespoons of pureed soup at Thanksgiving. Actually your increased sense of smell may help your appetite in this phase by savoring the aroma of soup etc. Best wishes and good luck
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I never heard of VHC. I checked it out and was shocked to see that it has 560 cal per can...that's quite a punch and will help tremendously through treatments. I'll stock up...my GF hates it when I stalk up...I'm always telling her a household can never have enough paper towels, toilet paper and toothpaste...VHC definitely beats Ensure calorie wise. I have Carnation breakfast mix...but that's not the same as VHC...
Once I heal from surgery I'm going to try to eat all my favs...God...I hope I can have regular meals next week...pizza, pasta, mexican, a steak...a salad...Oh what I miss! Ensure and broth has gotten old...
Thank you for the advice on VHC...never would have thought of it...
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Ray, After surgery I really ate and didn't slow down until after my third week of RT when my tastebuds went haywire and I had to go the PEG. To the extent possible, I also change my diet to hi calorie food. I got rid of all my normal low cal fat free stuff and packed on eight added pounds. I still have those pounds and that is starting to worry me 
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | My sense of smell is fine as always but my sense of taste just doesn't do much. Everything tastes the same after a bite. It also burns my tongue and gums now too. I do eat anything I can put in the blender but don't gain weight. I made bean soup with carrots and onions today for supper. Of course that could make me lose a little more weight if you know what I mean. Eat while and when you can Ray.
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: 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 |
Ray:
About the sense of smell, I have now what I call "my super smeller". I dont know what happened along the way, but my sense of smell has dramatically increased even when Im having sinus issues.
For hi calorie foods, I recently found out my daily milkshakes were about 2700-3000 calories each. I was drinking 1 or 2 per day and still not gaining weight, Im now much more careful.
3 or 4 cups chocolate ice cream (its now only 2 cups)
1 cup peanut butter (I have since switched to 2 tblspns)
1 cup milk
about 3 or 4 tsp sugar (now omitted)
1/4 cup chocolate syrup
Blend it up, that will help put some weight on. You can also make it healthier by adding some carnation powder and using lowfat things.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Don't get your hopes up too high that your appetite will return quickly after the radiation stops -- For many of us it was still months before even moderate appetite was there -- I also found that after the first bite or two that the taste just disappeared.
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: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Ray . . .I agree with other comments made suggesting you eat, eat, eat whatever you can while you heal from surgery. About 3 weeks after surgery, I was pretty much back into eating normal meals, etc. Your reaction to radiation tx will determine your path of taking down calories thereafter.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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