First timer in need of help
 

Hello everyone!

Last September I was diagnosed with a brain tumor. I very soon after had surgery and ended up having a benign ependymoma of the 4th ventricle. I was really surprised because I am a 27 year old male in average shape with really no prior medical history but that doesn't matter anymore. Now I'm on the long road to recovery!

I mostly tried to stay organic and vegetarian beforehand. The only supplement I took was b12. Anyways, I use a peg tube for feeding at the moment so everything needs to be in liquid form or a tablet that can be crushed and dissolved.

I am currently on jevity 1.5 which does not provide adequate nutrition in my opinion. I am not supplementing currently. I am really just trying to find products so I can have an intelligent discussion with my doctor or dietician.

I'm allergic to seafood so fish oil is out of the picture unfortunately. So far I've come up with algae oil, something with omega 3s. Is there any thing else that would benefit me? I am considering soy or whey Protein as well.

Please let me know which vitamins / minerals / supplements you suggest looking in to and why.

Right now I have problems with:

Balance
Weakness in right side
Swallowing
Coordination
Muscle contraction
Lack of sunlight.


I have requested to receive a full report that will show if deficient in anything.

well lack of sunlight, vitamin D, or maybe u can get one of those morning lights they use for sadd. swallowing---dgl deglycherrized licorice.

another thing is if your having trouble swallowing due to inflammation or dry mouth, try one of the following remedies:

There are oral meds that stimulate saliva production like Salagen/pilocarpine, but I don't think Salagen mixes well with other MI meds. That would be a good question for your doc.



Biotene also has gum to help dry mouth. If you can't find it in the store, a pharmacist can order it for you. I think the biggest problem is dry mouth at night because we can't swallow while we're asleep, and swallowing can help stimulate saliva production.




Sugarfree chewing gum can also be helpful, it stimulates saliva production and may help with dental issues. There are some brands that allowed to make dental health claims so those might be the ones to pick.



I also think, no one mentioned this, but sticking an ice cube in your mouth and sloshing it around. also theres certain spots on your ear/ around your mouth, that you can apply ice to and supposedly helps xerostomia.

Hi Boosted, and welcome to the Vitamin forum.

Your case is quite complicated. The Jevity is a really good product. Have your discussed this with your doctor? Adding on things of your own?
http://abbottnutrition.com/products/...ts.aspx?pid=29

Flax oil would be one way to increase EFAs, is organic, and would provide more calories. I'd ask your doctor how much would be safe for you to use.

I'd also get some testing for Vit D levels, and B12.
Vitamin D in the Jevity is quite low.

Are you expected to get the tube feeding removed? or is it going to be a lifelong thing?

It is really hard separating effects from the brain surgery from nutritional deficits. So don't hesitate to ask the doctors, or consult a nutritionist on your own if you feel that is necessary.

Here is a link with information on nutrient content:
http://abbottnutrition.com/products/...ts.aspx?pid=29

One thing that is missing is antioxidants...flavinoids found in
fruits and veggies. You can ask your doctor if it ok to add in nutritional fruit juices...there are several powdered versions with high ORAC scores.

If you are experiencing loss of muscle mass, you can also ask if whey protein is allowed for you.

Thanks to both of you for the replies!


I probably should have been more clear but most of my problems are cranial nerve related or due to the cerebellum being operated on.

I have talked to my doctor and he agrees that I am not receiving enough protein but it is not his specialty. I am not exactly sure but I have read 1.2 to 2.2 grams of protein per kg of body weight. I just weighed in at 180 pounds so about 87 kg x 1.8 grams = 147ish grams of protein a day. Jevity 1.5 is only giving me 105.7 grams of protein a day provided that all of my data is correct.

I am in the middle of radiation as we speak but I gained 7.5 pounds this week alone since I exercise 3-5 hours a day. Out of fear mostly, as you can imagine.


I was down to about 150 after 4 months in the hospital. Its been just over 2 months since I was discharged but want to pack on as much muscle as quickly as possible. I also need something that is good for the brain as I have healing to do and cranial nerves that need repair.

I forgot to mention this earlier but I have problems sleeping. I seem to wake up in the middle of the night and cannot go back to sleep.

I expect to have the peg tube temporarily but atleast for the next couple of months.

Low B12 will impact sleep. B12 is needed to make melatonin.

I think the whey protein is best for building muscle.
But you can use what you want.

There is only a very little B12 in your Jevity... only the RDA.
If you have testing done, you will see if you need higher amounts.

Hi again everyone! I have been tested for multiple different things but I am still looking for advice. Now I'm taking:

a multivitamin
flax seed oil
aged garlic
vitamin d3 drops
bilberry extract
probiotics
~20 grams of whey protein
daily in organic carrot juice

I am still taking Jevity via a PEG tube. I had my blood tested and suprisingly my b12 level was normal but my d3 level was dangerously near the acceptable low level. I am now taking 10,000 IU's of d3 drops to return it to a more acceptable level. vitamind3council.org has good information.

Is there something else that you recommend researching or taking? Especially given the situation?

How are you feeling? Any better?

what was the actual B12 number, "normal" doesnt necessarily =good

I am feeling a lot better, thanks! still not the same person and have problems that I need to continue working on but better none the less.


I don't remember my actual b12 level off hand but I believe 1000mg was the recommended high level and my b12 was at 9xxmg.

if you are interested in knowing the level of something else I will gladly dig up the sheet.

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.

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

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.

Evening primrose seems like a supplement for woman's health?

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.

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

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)

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.

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? :confused:

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.

so just stay with the flax and add a medium dosage of evening primrose? i am going to talk to my doctor about my allergies to seafood and shellfish since it has prevented me from using certain items in the past simply because i'm not sure if i'n going to blow up like a balloon or not.

does anyone know of a good website about omega fatty acids? i

You can start here:

http://neurotalk.psychcentral.com/showthread.php?t=6092

Barleans' makes a flax with borage (similar to evening primrose)

Here: Omega Twin:
http://www.barleans.com/flaxoil_blends.asp

Probably a stupid question.. But couldn't I just increase the amount of flax oil/primrose oil I take every day by like 1/3rd. I realize I still wouldn't be at her recommended level but it's a start? Especially, since it may take me several weeks to get allergy tested?

I just had some free time and read Barlean's website. According to them since people already take much more omega 6 than they need there seems to be nothing wrong with taking much higher dosages of omega 3s but you are right MrsD it probably would be easier for me if I took fish oil.

Lol totally confused now. Thank you all for help, especially MrsD. There is truly a lifetime of learning in this field.

I think you should start conservatively and not flood your system
with Flax oil.

The metabolism of the many fatty acids that occurs with ALA as the beginning nutrient is very complex. In people who have not been eating Flax or walnuts, canola, etc, the system may be sluggish and take a while to "wake up" to process the Flax.

Excess fats that do not get used in the EFA synthesis tree, get consumed as calories.

As you start to get better, you can increase slowly. We saw in our use at home very big improvements with fairly low doses.
But then we only had minor problems, not big ones.

Ok.

The recommended values are based off a 2000 calorie a day diet. Since I am burning approximately 2485 calories I could stand to increase the dosage a small bit anyways?

I definately will not make a large leap in dosage like you recommended. Rather, I was just curious if it was safe and to what limit.

I really like what I have read about the Barlean's omega twin. Thanks for the recommendation!

It is up to you.... I have read some people complain of loose stools when using too much fat suddenly.

I was only thinking of your comfort levels.

Barlean's is a great company, and has very good products.
When you run out of your current flax, I thought you'd like to try the Omega Twin. I'm glad you found it a good potential.

Keep unused flax oil in the frig. It is very sensitive to decay.
It will have an expiration date on it too. Some strides in keeping it fresh have been made, but its shelf life is limited. That is why it is in a black bottle, to keep light out.

Keep us up to date on your progress. ( I do leave for most of the summer and I have no computer access where I go. So if I do not respond to you, it is because I can't). Leaving in mid July this season.

I am sorry about your struggles. I agree that all the different info on foods/meds/supp really could keep one busy. I hope you find what works for you. I know you stated you live in a small town but hopefully your doc who is caring for you can direct you more with this. I know many of mine have not touched the nutrition aspect and I have mixed feeling on holistic but when I saw that doc he did more. I think a combo approach reg and natural. Hang in there

I am in the same boat as you. I have some doctors that have in depth knowledge about the tumor but know little about nutrition. I am going to an alternative healer that is good with nutrition but has little experience with my specific tumor. So, I just make a blend of the two. Between them, a few others, and myself I hope that the correct decisions are made.

I do know it is hard to find sometimes one who deals with the specific condition at hand. Maybe you could ask the docs though who do know of your tumor if it is ok about the supplements or if they have someone who deals with nutrition. Also some thing may not help but they can't hurt other then of course the pocket. How do you feel physically? I mean pain wise,strength,etc?Feel better

Pain is minimal to nonexistant. Still feel slightly weaker in some areas but strength is returning. I haven''t found anyone with knowledge of my condition that is also skilled in nutrition. I find something I like, rearch it, ask them all of their opinion and then make a decision.

For example, I hope ro purchase this since I am getting low on flax anyways..

http://www.iherb.com/Barlean-s-Omega...-ml/11688?at=0

and this as well. not exactly sure if 500mg or 1000mg is more appropriate..

http://www.iherb.com/Doctor-s-Best-B...ets/12137?at=1


but I will be sure to listen to all opinions beforehand.

I am glad you have little pain and seem to be improving. Did you ever find out your B12 cause I know some here take it and have found it help with energy. I know a previous doc of mine said b complex can give energy too. You have been through a lot so I am sure it takes awhile to get stronger and it is good you see progress.