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when to start l-glutamine , and what is best schedule for tonsil cancer and rads

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

hello again,

have been gathering a list from everyone who have been so kind and helpful.

just not so sure how to schedule things to help in preventing mouth sores.

when and how often on the l glutamine powder, what about the salt water rinses? and I am hearing about mugard and not sure where to get

it for ron.

He starts his rads monday and we find out tomorrow when he starts the cisplatin.

If anyone knows of a routine or schedule that worked best for them PLEASE help me in my confusion.

thankyou Janet

hoping T, Phrannie, matt and a few of the others see this and post info

michdjp's picture
michdjp
Posts: 200
Joined: Sep 2011

Hi Janet,

my dad was treated for stage IV tonsil cancer and he had rads and cisplatin and carbo 5fu.  When your husband does the chemo try to remember to have him put something cold in his mouth.  This seemed to help my dad with mouth sores.  He always did the baking soda rinse alot because brushing his teeth hurt a lot especially toward the end Of treatment. Keep him hydrated especially after cisplatin. 

Hope this helps

michelle

meaganb's picture
meaganb
Posts: 237
Joined: May 2012

He can start the glutamine now if he wants. I used two scoops in a cup of water three times each day. I always swished with it then swallowed it. It didn't prevent mouth sores for me but I believe it helped to heal them quicker. I still use it if I have a canker sore pop up. Mugard will be prescribed by the RO. You will probably have to ask them for it. It didn't help me at all but others had better experiences with it. GL!

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

Oncologist had samples, so the first two bottles I got from him....he then prescribed it for me and the Mugard Co. called me.  What they were asking was if I could "afford" to pay $350 for it, and I gasped and said no....they then dropped the price to $100.  At the same time someone on here sais I should have gasped twice as they got theirs for $50.  I know another person when to their site, and managed to get it by doing that.   With Mugard you want to start using on it as soon as you can, preferably the first day of radiation.  Here's the link to their site, but do ask Ron's Oncologist about it, as it really does help.

http://www.mugard.com/

He can start doing the L-Glutamine at any time, and he can use it as often and as much as he wants....it can be swallowed as well, unlike the salt and soda mix.  I always used both after I ate, salt and soda first then the LG.....by the last three months of treatment I kept a one liter bottle of LG by my recliner, and a one liter bottle of salt/soda on the counter, and used them both many times a day.

p

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

I was so hoping you would reply since I knew you had used these.

Thankyou thankyou thankyou for the website, I will be bartering by the end of the week.

Now we can have some type of schedule to start with, it feels good to have some guidance in the dark.

thankyou all,

janet

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

Hi Janet,

I rinsed 4-6 times a day (for the most part). Tried to time brushing and rinses after meals. I still got mouth and tongue sores as well as thrush. Probably would have been worse had I not been rinsing. Glutamine alone was taken when I did a shake (One meal a day until I couldn't take anything by mouth). Preferably, 5g of l-glutamine per day. Most protein powders have a very good BCAA (branch chain amino acid) profile and the addition of glutamne helps with immune system and protein synthesis. My team had no issues with me adding it to my diet. The only thing I was told not to take were anti-oxidants as the radiation in combination with the chemo oxidises the cancer cells. No worries concerning fruits and veggies with anti-oxidant properties as there's not enough in them to affect the treatment. They were more concerned with large doses of vitamin antioxidants (C, E...).

Positive thoughts and prayers

"T"

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou T, hadnt thought of antioxidants.

Ron is a meat and potatos kind of guy, doesnt eat fruits or vegetables hardly.

trying different fruit smoothies with protein powders now to see what he likes.

he HATES yogurts apparently. lol

thinking of pureeing (sp) a tbone up in a shake and seeing how that goes. lol

I had originally only thought of l-glutamine as in water to swish and drink, didnt think of adding it to the

protein shake, will try that next.

thankyou,

janet

 

Laralyn's picture
Laralyn
Posts: 454
Joined: Apr 2012

Please do look into it. I think it can make a world of difference. If you are hesitant about it, take a minute to watch the videos on the site. For some (many? all?) patients, it can mean the difference between mouth sores that are so painful that you need stronger narcotics to few or no mouth sores at all! I think they're trying to get more insurance companies to cover it so sometimes they will give it at a reduced cost or even free. IMO it's worth expediting to try to get it before the treatments start.

I found that it helps to write down everything he needs to do and everything he needs to track or measure. Put it in a calendar or type it up and print it out to fill in every day. You won't forget when the radiation and chemo appointments are, but there are important things that it's easy to lose track of. Until you go through it, for example, it's hard to understand how really disconnected you start to feel. Even when you're still basically feeling normal, time starts to pass weirdly. In that state, it's easy to forget to take medications on time (like the pills that prevent nausea that you should take even when you don't feel nauseas). Once he starts feeling a little under the weather, it's even easier to lose track of what you have and haven't taken.

On top of that, it helped me a LOT to treat food and water as a part of my medications. Whether via PEG tube or mouth, figure out how many calories and how much water he needs per day then SCHEDULE and TRACK it. It sounds like the strangest thing ever when you hear that people forget how to swallow, but when you go through this you start to understand. When your mouth and throat hurt, you have no urge to eat or drink. You start to subconsciously avoid it. It's way too easy to get to 5 or 6 at night and realize you've only had one bottle of Boost or one glass of water... and that makes you weaker and even more forgetful the next day. Treat nutrition and hydration like medicine!

Hope this helps. :-)

metro22's picture
metro22
Posts: 16
Joined: Apr 2013

I started drinking 2 portions of Juven a day just prior to surgery as it helps some heal faster and I still and taking it during rads. It is made by Abbot - the makers of Ensure. Each packet has 7 gram L- glutamine and 7 of L- arginne plus a blend they call Revigor. Cannot say if ti helps as have no control to measure it too. I mix each packet  with 250ml so that adds  half a liter of water a day as well. At Walgreens the 8 pouch box is $20 - so $5 a day but I got 20 coupons on Ebay for $5 off a box for about $2 and no postage.

 

I also take daily fluconazole  to hopefully prevent thrush and it has a side benefit of helping reduce mucositis for many users. I have soem sample vials of Caphosol - calcium phosphate rinse also as a preventative for many or to reduce mucositis degree and length of time. NeutraSal makes a similar product in pouches at a much lower cost. Gelclair is now available again in the USA and it is more of a coating to use if you have sores.   Zinc supplements were used to try and protect taste buds but a newer study did not find any benefit at all.

 

Everyone benefits from good nutrition – Formulas may not be the best but they can boost your calorie and protein intake. I have a PEG  mostly so that I can hook up to a pump at night and add 1500 calories and over 50 grams of protein while I sleep.I had gone form 150lb to 116 so in my case important to not lose more.

 

If insurance will not pay for a pump there are used ones on Ebay for around $200. Like the Kangaroo Joey or EnteraLite Infinity

 

 

 

Best wished during treatments!

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