Previous Thread
Next Thread
Print Thread
Page 5 of 6 1 2 3 4 5 6
#196752 - 07/11/18 08:18 PM Re: After Radiation treatment questions [Re: Kristen S]  
Joined: Mar 2018
Posts: 34
Kristen S Offline
Contributing Member (25+ posts)
Kristen S  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 34
Another question for you guys...did anybody use the powder Glutasolve? It's a glutamine powder that you add to a liquid and drink. You can also add to soft foods and eat it. My dietitian has recommended it and I've been using it for almost 2 weeks now but honestly can't say if it's helping or not?! She said that it would help my mouth to heal.

Also, I threw out a question about my native tongue just hurting. I think I may be biting it at night but not sure. It doesn't have an ulcer on it. Did this happen to anybody else? The discomfort goes back to my surgery date but the surgeon said not to worry about it. I had my DDS look at it before radiation started and he thinks I may be biting it when I'm sleeping. Well, after my radiation treatments, this is the area that's causing me the most discomfort! It's frustrating! Anybody else relate to this?!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
#196753 - 07/11/18 08:25 PM Re: After Radiation treatment questions [Re: Kristen S]  
Joined: Mar 2018
Posts: 25
Linda Linch Offline
Contributing Member (25+ posts)
Linda Linch  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 25
I used something called Helios that the doc suggested. It contains Glutamine and sounds similar to the Glocosolve Not sure if it’s done much or not as well. I Also have tried Juven that Paul B recommended on here.

Last night I was lying in bed and had a sort of mouth spasm and bit my tongue as I was falling asleep and it hurt like fire! Drew a tiny bit of blood even. Feels ok today but it was totally uncontrolled. So I can see where that could happen!

Linda


Stage 3 SCC of tongue/floor of mouth. Originally Stage T1N0M0 but one pesky lymph node discovered in neck after resection.
Now T1N1M0
Surgery 2/16/18 at UAB.
30 Proton Therapy Treatments
Cisplatin Chemotherapy
#196754 - 07/12/18 12:04 AM Re: After Radiation treatment questions [Re: Kristen S]  
Joined: Mar 2018
Posts: 28
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 28
Maine
Dad drinks Juven for healing after his surgery. According to the makers 2 packets a day is clinically proven to aide healing of bedsores, burns, non-healing wounds in diabetics and other injuries. It is quite expensive- $25 for 8 packets at Walgreens, but it does seem to help. It's very strongly orange flavored. They make a unflavored and a berry flavored. The store I buy them at didn't have unflavored and I noticed the berry one doesn't contain collagen.


My father's information:
63 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Slated to start radiation and possibly chemo in July 2018
#196755 - 07/13/18 12:32 AM Re: After Radiation treatment questions [Re: Kristen S]  
Joined: Jul 2012
Posts: 3,105
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,105
NYC
Vicky1,

I received Juven for free at my radiation center, a few years back though. It’s worth a shot to ask one of your doctors such as radiation oncologist, oncologist, ENT, other support staff like nurses, SLP’s, if they offer such items for free or similar type or even have discount coupons, which I’ve used for glucerna when I didn’t get for free being tube dependent, at the time. I think their made by some of the same company’s, maybe Abbott. They may offer discounts on their webpage, if you check. There is another head and neck cancer support group, cancer alliance, that I heard offers protein drinks that were donated, but maybe they have Juven too.,

I hope this helps, and good luck!!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






#196756 - 07/13/18 10:45 AM Re: After Radiation treatment questions [Re: Kristen S]  
Joined: Jun 2007
Posts: 10,035
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,035
PA
To elaborate on Pauls suggestions...Ive always found nutritionists and nurses can be a great resource to help patients with a few samples or even a case of formula. It doesnt hurt to ask, maybe you will be able to pick up a few cans or cardboard boxes. Many large companies have programs designed to aid needy patients. Years ago I was able to get 12 cases delivered to my home for no cost simply by asking and my nutritionist filled out a request form. Im sorry but that was over 10 years ago and Im not able to remember which company did the give always. Abbott should be one of the companies that offer cases of their products.


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
#196772 - 07/15/18 07:44 PM Re: After Radiation treatment questions [Re: Kristen S]  
Joined: Mar 2018
Posts: 34
Kristen S Offline
Contributing Member (25+ posts)
Kristen S  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 34
Okay another question for you guys...I had a busy day yesterday. Not super physically active but just gone from the house a while to visit some family and friends. I did bring along my "liquid lunch" and supplements for the feeding tube. I was drinking water throughout the day. Came home tired and slept great. But today I am EXHAUSTED!! I can barely make it from upstairs to downstairs. Really focusing on rest and nutrition today. I'm almost 4 weeks out of rads. Is this normal? Did I overdo it yesterday? Am I just having an off day?
Bummed that I feel this way. I feel like I'm stepping back in progress instead of accelerating!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
#196773 - 07/15/18 08:12 PM Re: After Radiation treatment questions [Re: Kristen S]  
Joined: Oct 2012
Posts: 971
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 971
Toronto, Canada
It really takes a while to build up one’s energy after treatment. When my husband was 8 weeks out, when we went for a walk, I always planned the route so that we would come on a bench at some point and he would be able to rest.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#196774 - 07/15/18 08:25 PM Re: After Radiation treatment questions [Re: Kristen S]  
Joined: Mar 2018
Posts: 25
Linda Linch Offline
Contributing Member (25+ posts)
Linda Linch  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 25
Kristen,

This happens to me too. In fact I’m in and out of bed today just feeling so tired. I’m also coming off my 12mg Fentanyl patch for th last few days so I’m not sure if that’s a factor. Take a rest day and see how you feel tomorrow. I know how frustrating it is when you just want to go and do.

Linda

Last edited by Linda Linch; 07/15/18 08:26 PM.

Stage 3 SCC of tongue/floor of mouth. Originally Stage T1N0M0 but one pesky lymph node discovered in neck after resection.
Now T1N1M0
Surgery 2/16/18 at UAB.
30 Proton Therapy Treatments
Cisplatin Chemotherapy
#196775 - 07/15/18 11:27 PM Re: After Radiation treatment questions [Re: gmcraft]  
Joined: Mar 2018
Posts: 34
Kristen S Offline
Contributing Member (25+ posts)
Kristen S  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 34
It sure does-thanks for the reply!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
#196776 - 07/15/18 11:30 PM Re: After Radiation treatment questions [Re: Linda Linch]  
Joined: Mar 2018
Posts: 34
Kristen S Offline
Contributing Member (25+ posts)
Kristen S  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 34
Hi Linda- I'm starting to feel a little bit better now that the day has progressed. Mornings tend to be hard! Perhaps the coming off the patch has an effect for you- I wouldn't see why it wouldn't as your body is in a transition.I will be taking it pretty easy for the rest of the day. I just can't sit on the couch ALL day. Have to do something. Cleaning the kitchen- lucky me!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Page 5 of 6 1 2 3 4 5 6

Moderated by  Eva Grayzel 

Support OCF


Help OCF

Shop Amazon and Help OCF

Who's Online Now
1 registered members (KristenS), 26 guests, and 0 spiders.
Key: Admin, Global Mod, Mod
Forum Statistics
Forums23
Topics17,224
Posts191,831
Members11,683
Most Online306
Aug 21st, 2016
Top Posters(All Time)
ChristineB 10,035
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,743
Gary 3,552
Newest Members
sri123, Avon1989, CarolineKH, Tiarco, DonnaK
11683 Registered Users
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.6.0