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Old 06-12-2009, 04:13 PM #11
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Feeling better and stronger is a very good start.

The only thing I can think of right now is some evening primrose to go with that flax. They sort of work as a team.
You don't need a high dose, just one cap of regular type, daily.

If you had pain/inflammation issues, I'd suggest fish oil too.
Males don't convert to long chain EFAs EPA/DHA to the extent females can. So the primrose helps the flax get to the long chain stage as well.
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Old 06-12-2009, 05:45 PM #12
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I am sorry for all you have and are going through. I too was going to suggest if you can see a nutritionist but are you able to eat any food or will you be able to? If so then a nutritionist who deals with similar conditions and that can work with your gp may really help. I was going to suggest magnesium but could be wrong but because of the muscle problem you stated. Not sure but what about vitamin c for healing? Feel better
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Old 06-12-2009, 06:02 PM #13
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I exercise 4-6 hours daily and have gained about 30 pounds in the last 2 months.

I will definately research both of your suggestions. I cannot take fish oil though as I am allergic to seafood.

I have visited two nutritionists and both have replied that "Jevity is fine" but I never seemed to progress with just Jevity. I believe they're both used to 80 year olds in nursing homes not active 27 year olds.
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Old 06-12-2009, 10:33 PM #14
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Evening primrose seems like a supplement for woman's health?
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Old 06-13-2009, 12:21 PM #15
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Evening primrose contains GLA... GLA is an intermediate
step in essential fatty acid metabolism. Without it you cannot convert flax to long chain fatty acids in the body.
Magnesium and B6 are also cofactors in this metabolism.

It is encouraged for some female complaints, but it is a nutrient for other things too. The female recommendations are high dose typically. For you for just conversion to other fatty acids, a lower dose is fine.
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Old 06-14-2009, 05:29 PM #16
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Boosted as someone who has seen a lot of nutritionists it is very key to find one that specializes in the condition you suffer. Otherwise I feel almost more harm then good can come. Now this is just my experience. Is it part of your condition or from meds you have gained that weight? Will you be on this tube for ever or will you transition to just food? Hope you feel better
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Old 06-14-2009, 11:36 PM #17
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Thank you for the replies and the concern. I am not buying any of these supplements, yet. I'm simply researching them.

I don't think that weight gain is a side effect of the tumor. I'm not taking any medication so I can only assume that the weight gain is from the supplements and the fact that I am somewhat young and trying to be as active as possible.

Most do not have the PEG tube permanently so I would hope not. I do have it now though so I guess it must be considered a possibility.

I live in a small town and I feel that the local nutritonists have not been helpful. However, I found some pretty interesting stuff pertaining precisly to my condition but admittedly some of it is over my head. Please read it if you have time. It's pretty interesting!

hxxp://sites.google.com/site/adultependymoma/purpose-of-the-site/meet-doctor-lan/ask-doctor-landolfi/ask-doctor-landolfi-cont/advice-from-jeanne-wallace-phd-cnc

(you need to fix the hxxp)
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Old 06-15-2009, 05:46 AM #18
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That is a very good list of advice.

The EPA and DHA she is talking about are long chain fatty acids made from flax oil in your body. Males do not convert as efficiently as females. So if you take only flax without evening primrose you will not see much of either EPA or DHA. Even with evening primrose added to the flax you can't reach 1000mg of DHA a day as Dr. Wallace recommends. So taking a fish oil type supplement may be needed. There are vegetarian types as well.

The amounts she mentions are quite high. Most fish oil capsules contain 150mg DHA alone. Since you are on a tube feeding, you would have to use a liquid form of fish oil like this:
http://www.iherb.com/Carlson-Labs-Th...0-ml/2796?at=0
Make sure that you realize that some liquids are Cod liver oil, and not fish oil. You would want the fish oil (fish body oil).

Regarding the allergy to seafood. I've looked that up in the past, and found that the proteins found in seafood are not in the fish oil typically.
Also there are specific reactors...some are allergic only to shellfish like shrimp/clams etc. Others only allergic to fish meat, like cod/trout. I have an organic iodine allergy to uncooked seafood (from an IVP dye reaction). But when the seafood is cooked I get no reaction. (no clams on the half shell for ME!)
I would check and see exactly WHAT you are allergic to. And perhaps consult an allergist to be sure.

Omega-3 oils are used in chemo and breast cancer. We have a member here who reversed a breast cancer metastasis with flax oil and cottage cheese (sulfur containing protein).
here is the link to Pansy's post:
http://neurotalk.psychcentral.com/thread41361.html

Dr. Wallace is a very well respected nutritionist. I think you can follow her advice safely.

There are DHA supplements made from algae. But they typically only have 100mg/capsule.
This is one that is a liquid. But it is low in EPA. It combines flax too.
http://www.iherb.com/Flora-Vegetaria...-oz/15616?at=0

Most of the vegetarian DHA supplements are low in EPA or have none.

Dr. Wallace's comments on curcumin are important. But this will be hard for you to do via tube. Curcumin is not absorbed easily from the GI tract and the newer forms with enhanced bioavailability are gelcaps with soy oil. They would be difficult to express into a tube. You'd have to work with them alot. The ones I have are not very fluid inside, they are more like a gel.
You could try mixing the cucumin powder with the fish oil liquid and hope that oil would act to facilitate the curcumin absorption.
Suffice it to say, curcumin is a hot topic topic now for Parkinson's and other brain inflammation problems.

Your Whey is doing a good job for you it appears. This is increasing the protein your body needs.

Your B12 may be normal still because you are living on the stores from your liver. Once that is gone, things may change for you. Normally in healthy people up to 5 yrs may be stored in the liver.

Don't hesitate to ask further questions. I am always here.
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Old 06-15-2009, 04:09 PM #19
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ok, please correct me. she says:

"3. Balance the ratio of omega-6:3 fats, targeting a 3:1 ratio for those with benign tumors."

I take that to mean "take 3x the omega 6 as omega 3s."

how is taking that even possible? right now I am taking tBarlean's High Lignan Flax Oil.

which is about 3:1 omega 3 : omega 6

Reverse of what she said?
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Old 06-16-2009, 12:43 AM #20
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Most people consume omega-6's already. They are in just about everything. Soybean oil, sunflower, etc. They are in your Jevity as the fat portion. Jevity 1.5 has just about 30% of calories comprised of fat.

The suggested ratios of 3:6 are 1:1 to 1:5. Very few Americans get that high a ratio of Omega-3. Dr. Wallace's suggestion of 1:3 is in that ballpark. I don't think you can alter your specific diet like a person who is not on a tube. You have a fixed intake of a commercial product. Just do the best you can. In comparison, tests on children with ADHD found that their ratio of 3 to 6 was about 1:25 ! It has been estimated that 1:25 occurs in many Americans as a result.
Start with a fair dose of the flax oil, and work up if you choose.
People do improve on other ratios, anyway. (the Jevity has some Canola oil in it, which does provide a small amount of Alpha Linolenic Acid (Omega-3). The corn oil is all omega-6 and part of the Canola is Omega-6.
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Last edited by mrsD; 06-16-2009 at 01:04 AM.
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