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#196288 04-28-2018 02:04 PM
Joined: Mar 2018
Posts: 34
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Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 34
Hi all!
Just finishing my 3rd week and starting to have mouth effects. My docs at MD Anderson recommended Healios. It’s a Glutamine Complex developed by a cancer doc that is designed to promote healing of mucosal tissue. It comes in grape and orange and I just got mine and it tastes pretty good! Too soon to know if it will help but I figure it can’t hurt!

Had anyone else tried it?

Thanks!
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
Joined: Jun 2007
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Hi Linda! You must be doing very well if your sense of taste is still able to detect the orange and grape flavors after week 3. I havent heard anyone talking about the Glutamine Complex here. The flavoring could be something that irritates overly-sensitive radiation caused mouth sores. In the health food/organic aisles Ive seen a wide variety of glutamine products. They all come with a wide variety of potential negative side effects too. To avoid any bad reaction with anything you already are taking or any treatments you are going thru... prior to trying... ALWAYS ask your doc.

OC patients going thru rads and recovery should be using a mixture of 1 cup warm water, 1 tsp salt and 1 tsp baking soda to rinse their mouths several times a day. This will help keep the ph balance and help with healing as well. For most, the salt in the mixture burns. Its ok to cut back on the salt, just try your best not to completely omit the salt.

Manuka honey is another option. Its been scientifically proven to work very well on mouth sores. The higher the number the better it works from what Ive seen OCF members say about it. Im pretty sure number 12 is what works best.


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
Joined: Mar 2018
Posts: 34
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 34
Hi Christine,
Actually the Healios was developed by a Cancer doc and recommended by my RO team. It doesn’t burn or sting at all so I’m hopeful it will help. Trying the Manuka Honey as well, but mine says 400?
Scary to think the taste will be gone soon. Hard enough to make myself want to eat! Haven’t lost any weight yet so that’s good.

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
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Hi!

I’ve taken L-Glutamine tablets on my own as a mix to help with neuropathy a few years back, and actually decades ago, to help with tissue repair lifting weights.

It wasn’t until 2012 when I changed cancer centers that they recommended, and supplied glutamine drinks for tissue repair, and mucocitis, for free! I did the same in 2013, and mucocitis wasn’t too much an issue, but neither was the amount of radiation or strong chemo. I forget the name of the drink off hand, but they were OTC products, and happy my center was providing them.

It helped somewhat, I believe, but I’m not the best of patients being consistant until it’s needed.

I hope this helps!


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






Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
Likes: 6
Its funny you mentioned the glutamine. Just Friday, I was looking for the unflavored whey powder I use and stood there in the organic/health food section checking out all the promises every product there made. I considered buying a couple different one use envelopes to see if they would help me or if its a waste of $$$. Im pretty sure at least one of the items I was checking out was a glutamine product. I figured I'd talk with my son about those products as he's much more informed about that sort of thing than I am.

Sorry, I cant remember what the lowest number Manuka honey needed to get the best results. I just remember the higher the number the better it works and the more expensive it is. At 400, yours should do wonders smile If you have time and feel like searching, feel free to go way back to around 2008 when we first started talking about the Manuka honey. Those early discussions were before any studies published their results about the Manuka honeys benefits.

Im all for whatever helps patients get thru their barbaric treatments easier. Just always be careful and ask the doctors first. Ive seen patients who started taking higher doses of certain vitamins then when they talked to their doc about it they found out whatever they had been taking was interfering with their treatments, making them less effective.


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
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
If you go to the search function, and input “Glutamine,” you will get about 3 pages of posts. One member put the glutamine powder mixed with Manuka honey, and salt water mixture.

The OTC product I was speaking about is Juven, a therapeutic nutritional drink.


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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