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rad onc - no LGlutamine or Amifostine or feeding tube recommended - your thoughts?

susan0803's picture
susan0803
Posts: 90
Joined: Aug 2010

Hi,
We met with the radiation oncologist today.
A few things that she mentioned I would like to pass by here and get your thoughts on.

No Amifostine:
Sloan will not prescribe Amifostine any more. They say that the side affects and possible negative interaction with the treatment outweigh the benefits of small percentage of protecting the salivary glands.
She said that she predicts he will have about 30% permanent loss of salivary glands but will know more after tomorrow's CT scan to know where they are going to target the rad. (mostly left tonsil area). I thought that was a reasonable percentage not to use the Amifostine. Also she said that there can be things, like accupuncture that he can do after treatment to help in saliva production.

No LGlutamine and other anti-oxidants:
Joe should not take LGlutamine because it could negatively impact the treatment since it is an anti-oxident. (Something about free radicals from the radiation being impacted by the LGlutamine)
She will probably give Guaifenesin for phlegm instead.
She mentioned we may use some of the other stuff for phelgm and mout sores that was mentioned on this board (eg Biotene and Salagen).
Should I keep pushing her on the Glutamine?

No feeding tube yet:
She does not recommend getting a feeding tube yet. She feels it's more important to try to keep swallowing to get nutrition. She did say that the medical oncologist will advise us differently and that we can make a tentative appointment to get the tube later in the treatment if indeed Joe gets malnourished.
From this board it sounded like getting the tube in was better, so it doesn't get to the point where Joe is malnourished or dehydrated.
Thanks for your thoughts on this and advice.
Much appreciated!
Suzanne

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Mark's radiolgist said "No" also to Amifostine, stating there was no clear evidence that it actually helped.
We said "yes" to L-glutamine, and I looked it up on line. People here recommended it very highly and it did not seem like there was any interaction as far as I read. I am sure we told the docs about it, and no one said not to.
Feeding tube...I say "yes". Mark's ENT recommended he "not" get it for the same reason your were given,,,to not become come dependent and force him to continue swallowing. Mark NEEDED it for only 6 days...but he NEEDED it. He had it for 9 weeks, used it for 6 days and was happy when it was removed. But we were very happy it was there...again we followed the advice of those on these boards who had gone before and really knew.
Kim

dogsrule's picture
dogsrule
Posts: 96
Joined: Apr 2010

My radiologist did not recommend the amifostine either. He pretty much said what your doctor told you. I had 27 rounds of imrt radiation for unknown primary on both sides of my neck. My saliva is back to about 85%. Still dry and have to drink water alot.
My oncologist recommended that i do not take my vitamins after the diagnosis and thru the surgery and the treatment. Sorta hinted around that it could "feed the cancer". My words , not his. I didn't use or talk to my doctor about glutamine so I don't know but some others on this board have used it and were very pleased with the results.
I had a peg tube put in the last week of my radiation treatments because I was having such a hard time eating and drinking. I was so glad that I did and I beleive it really helped me in my recovery. They didn't recommend it at first but told me it could be an option later. I used it for approx. 4 months. I am now 7 months out from my last treatment and just received the good news that everythings looks good on my 6 month PET scan.
Good luck to Joe and you. Stay positive and strong.

SASH's picture
SASH
Posts: 284
Joined: Apr 2006

I will only comment on the tube. I would say yes, get the tube but only use it when it needed. Swallow as long as you can and when you can, but have the tube if and when you needed.

I didn't have the tube for treatment and by the end of radiation it was way to painful to swallow that all I was able to do was 1 glass of Gatorade a day. The worse thing that the tube can do is never be used and you just have to keep it clean without being used.

friend of Bill
Posts: 87
Joined: Mar 2010

Reluctant to advise but the tube was a lifesaver. Resisted it. Wish I hadn'd. Even with it, I lost 50 pounds. The tube feeding made an almost unbearable situation more manageable. Didn't like it. Didn't miss it when it was gone, but it got me where I needed to be.

Vince

susan0803's picture
susan0803
Posts: 90
Joined: Aug 2010

all good advice - thanks!

regarding the tube, Joe did agree he should get it but wants to wait so he can try as long as possible to keep swallowing to get nutrition. and from what others post here, it sounds like it's ok (maybe not ideal) that he waits to get it.

i will keep pressing the rad oncologist about the Lglutamine. maybe she'll change her mind or allow us to try it....

thanks much again! i hope i can return the help and support to someone in the future.

suzanne

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

My rads MD didn't endorse the Amifostine either, but my chemo MD did and ordered it. She felt that not only did it possibly save me salivary function (which my rads MD agreed). That the Amifostine helped a lot in not getting the thick ropey phlegm and mucous problems that a lot seem to have (I never did).

Yes, it does have a lot of temporary side effects (or at least temporary in my case). But with everything else going on and going in knowing things to watch for, it's doable to the point you can't do it any longer.

I do feel that it was beneficial for me, and would do it again.

As for the PEG, I was a little heavy going in and while that option was always there. My MD's felt I could handle it without in jeaporady to my health. If they would have ordered it, I would have had one, they didn't. For me it wasn't so terrible that I ever regretted not having one. I did have about seven weeks where it was mainly Ensure Plus, water and minimal soft foods. But I still was never at risk, I lost about 45# total and that was it.

Everyone is different and reacts and heals differently.

If your MD's are ones you trust as I do mine totally. I'd have no problems doing what they prescribe.

I don't necessarily feel that the reasoning that they gave are out of line. I just feel a lot depends on the location, experience, history and locale of the facility. Basically what's worked for them and that facility.

These are all only things to help you get through. I don't think that any of the three are detrimental to your recovery or treatment success.

Best,
John

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Suzzane,

I didn;t get to try Amifostine but did have to get the PEG in about week 3 as I was losing too much weight and couldn't really eat. I was weaker by that time but it is doable if he needs it by then.

On the L-Glutamine, it is an Amino Acid not an antioxidant so it should be OK but you will need to listen to the Docs. He should be OK to use it as a mouth rinse at the very least but it has been shown to prevent loss of muscle tissue loss, which is what will happen if he does lose a lot of weight. It has also been shown to actually increase the effectiveness of Chemo in some cases. If this will be the case I certainly can not say but you can take this passage along to the Doctors and see what they say. Unfortunately they may know little or nothing about it and hence err on the side of caution and exclude it.

Regds
Scam

"L- GLUTAMINE is an essential Amino Acid that : improves brain functioning, stabilizes blood sugar & decreases alcohol cravings, maintains health /functioning of the lining of the gut, important for muscle function & metabolism, helps with wound healing (esp the mucosa), helps maintain acid/alkaline balance, is critical in protein metabolism. Glutamine & Cancer : studies showed Glutamine enhanced the selectivity of antitumor drugs. It did so by helping to protect normal cells from the chemotherapy while making the tumor cells more sensitive to the chemo. Further, when Glutamine was given to patients undergoing abdominal or pelvic radiation therapy it protected the intestinal mucosa from injury, accelerated the healing of the radiated bowel & modulated the long term consequences of radiation. (Main purpose for me was to aid healing and stop mouth burning during and in the horrid period after treatment finishes).

Cancer and other diseases and injuries induce a state of physiologic stress that is characterized by glutamine deficiency. This deficiency is aggravated by chemotherapy and radiation therapy used to treat cancer. Therefore, glutamine is sometimes described as a conditionally essential amino acid that needs to be supplemented when the body is stressed.

Cancer-related glutamine deficiency can reduce the tolerance of normal tissues to cancer treatment, necessitating reduced doses and possibly diminishing the effects of treatment. Glutamine supplementation may help protect normal tissues from chemotherapy and radiation while sensitizing tumor cells to these agents.

Increasingly in the early 2000s, glutamine is considered an important component of both oral and parenteral (intravenous) nutrition (PN) therapy during high-dose chemotherapy and radiation treatment. It also is used as a nutritional supplement for bone marrow transplant (BMT) patients, particularly those with leukemia or lymphoma whose bone marrow has been destroyed with high-dose chemotherapy."

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I had the shots. I was down a salivary gland going into rads. I am 16 months out of treatment and still very dry. I often wonder if i
I'd be worse if I didn't get the injection every time.

I will say I always recommend getting the peg. I had really bad side effects and much pain withy rads tho. I am 5'2" and I was 130 going in. I was down to ?87 pounds. I am now 96. I'd have died without that tube. I could not eat or drink for months. No joke. My mouth was just destroyed with sores and intolerable pain and I was on 75 mcgs of fentanyl thru rads. The radiation damaged my esophogus and I still cannot swallow normally. I've been stretched twice since and I still have a stricture. I'm not trying to scare you or tell you horror stories. Just want to inform you that it can happen. I believe in being pro-active vs reactive. Rather have the proceedure before my body was knocked down with rads and go in strong and fighting and prepared.

Best of luck. Blessings,

sweet

susan0803's picture
susan0803
Posts: 90
Joined: Aug 2010

We met with the med onc this week who was in favor of the tube. She gave Joe some convincing arguments and he is going to get the tube done now before treatments. Mostly because once treatments starts, scheduling getting it done will be harder and he will already be in pain from the rad, as people have mentioned here, so why add more to it. the med onc also said the glutamine was OK, so i think we are going to use that too.

joe will also be getting iv hydration too (the day of chemo, which is 3 times throughout the 7 weeks, and for 2 days after the chemo day). it seems they have thought of mostly everything, hopefully (cross fingers)

thanks again everybody - as always!
suzanne

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Hope and pray that all will be well in your treatment no matter what way you go.

Take care
Hondo

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Suzanne, I tried to PM you but was blocked. Have some info on alternative (plant based) nutrition for the PEG which got me through. Let me know if you need this as pretty much all the stuff you will get will be milked based protein (Casein).

Scam

staceya's picture
staceya
Posts: 704
Joined: Jan 2010

I would argue and say yes on all 3.
Amifostine I had it, no thick phlegm, 90+% of saliva back
L-Glutamine Used a bit, helped with sores
Tube Almost needed one, would have been much less stressful if I had one.

Good Luck
Stacey

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Suzanne. Successfully received your PM's thank you, but there must be a setting which blocks 'Replies' so I cannot send my reply. THere might be something in the settings to change to fix this.

Scam

susan0803's picture
susan0803
Posts: 90
Joined: Aug 2010

Hi Scam,
I think I did it now to allow you to reply. Sorry about that - as you can see I'm not very proficient at this stuff.

Suzanne

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