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I think my taste is so sensitive, I could tell a difference after one day. Most effects of radiation are felt after the first two weeks, in some immediately. Good luck next week.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Hey Ambra - mine changed the second week of treatment. Like Paul said, it's different for everyone. It's important to find something you can get down. Maybe Christine's milkshake recipe? Lots of calories, have you seen it? If not I think I might have it. I'll look and pm it to you.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Your sense of taste has held out about a week longer than most. Ive seen many OC patients begin to say their sense of taste started to go around week 2 or 3. Its gradual. One day something tastes fine and then the next you would swear it was salted burnt charcoal. Even water will have an off taste. I hated drinking water due it it tasting to me like salt or like it was burnt.

This might help you. Each shake has at least 2000 calories. You can make it thick or thin depending on how much milk you add. Its ok to drink 2 or even 3 per day. Many days when I was recovering I drank 2 or 3 until I counted up the calories and was shocked. Some days I would take in over 7000 calories and I was struggling to keep weight on. That is an example of how hard a patients body has to work to rebuild itself after undergoing rads and chemo treatments for OC.

You are about at the point where you may begin to have a few bad days here and there. Unless you are one of the lucky few who sail right thru. Your intake every single day is what will make things easier or harder. No matter how rough it gets, every single day take in a minimum of 2500 calories and 48 oz of water. If doing chemo push even higher amounts of water right around chemo days.

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder

Blend this extra long to make it very smooth and creamy so it goes down easier.

Another thing that should help is the List of Easy to Eat Foods.

Hang in there, we got your back smile


Christine
SCC 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 smile
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Ambra Offline OP
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Thank you so much for all the advice! Christine, I will make sure to try that chocolate shake. I am getting plenty of liquids these days, but calories are a bit harder.

The thing about the taste is, it was already messed up from TORS (couldn't taste some/most sweets) and it recovered a little, but never quite right. So now it started getting worse, plus I can not taste salt anymore either. I can taste bitter/sour just fine, too bad those did not go away first. I really hope water will keep tasting normal.





36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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I can vouch for the shake and wish I had this early on. Keep trying foods with the understanding all is experimental at this point. The shake though should be a staple even though you may not be able to drink all of the time. Water is key and you should do 84 to 100 ounces each day. The side benefit is quicker recovery of swallowing functions. Keep moving forward and tap in to the group's knowledge.


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: May 2013
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Senior Member (100+ posts)
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Try to find scandishake as well. Also heard that strawberry will always have the highest calorie count.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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"OCF Canuck"
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Its about that time... ;o( bye bye taste buds... they'll be back eventually... 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
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I'm just about with you Ambra, taste is beginning to go, mouth is hurting a fair amount, throat is still basically okay.

So, now and the next few weeks is the hard part for both of us. The good thing is you should start coming out of it before I do.

Hang in there Ambra, I know it hurts, but we will get through this.

And eventually we will even dance again.

Tony

Last edited by n74tg; 11-19-2013 03:50 PM.

Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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"OCF Canuck"
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You guys are both troopers. You will get through it. 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: Sep 2013
Posts: 94
Ambra Offline OP
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Thank you everyone for the all the encouragement.

Christine, I tried your shake two days ago and it was great! (don't know how it would taste today). Can it be refrigerated for up to 24h if one makes too much? My taste is so off I can not tell if something tasted bad/spoiled or not.

I know that everyone is different, but in general, how much time after the radiation does the taste come back (not 100%, but most of it)?

More bad symptoms kicking in: serious burning/sensation on the skin, my mouth burned really bad from the prescription fluoride toothpaste, taste getting really bad really fast... Sigh.

Today was my last day at work for a while, probably for the rest of 2013. Don't have any energy, can not concentrate, it took me 4 weeks to write a conference abstract I would normally finish in one. At least I have submitted it on time.

I apologize for all the venting, feeling pretty down right now.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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