Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Would anyone be interested in a topic for herbal treatments or supplements? I know my dad started me on some supplements soon after I was diagnosed and being 14 I didn't want much to do with it and soon stopped taking all that he wanted me to. But, when I had radiation my dad suggested that I take kelp and I took it through the full treatment time, then stopped at the end of the treatment...consequently, I didn't get the nasty burns that are associated with radiation until 2 weeks after the treatment when I went swimming and didn't put enough sunscreen on. I think that it is worth it for more people to try taking kelp during radiation and for a while after to see if it helps them too. Also, I took something called Frequensea back in October 2006 to see if that would help and am about to take it again because of the results I just received. I will keep you updated on how that goes.
Sherry

Maybe Olga can move this thread to it's own topic?

We are having 'K' drink Green Tea. Green Tea decreases VEGF and it also has a cancer protective effect - especially if there is a low tumor burden.

Hello Everyone
I wanted to start a topic on the things we are doing to build the immune system and the things we are all going for ourselves and are children that have ASPS. I see this was already done so i am posting here and I hope this thread gets moved to an area that is more public.This will help all of us in this fight! It is very hard to read very book and if everyone contributes it will make it much easier for us all.

I have been told by doctors and read that the immune system is in many doing a very good job at giving ASPS and cancers a hard time and this is what we want!

When I went to the Onc he said what ever you are doing keep it up and we will watch the spots in your lungs but so far your body in keeping this in check and it wouldn't even let the 2.5 cm lesion spread from your 8th rib as far as we can see and it has been there for years now. I am not saying that this is just from diet I have no idea why this has happened and I am very happy though pessimistic this diagnosis is evil and sneaky. I maybe in a remission of some kind. *shrugs*

A word of caution to anyone undergoing any type of chemotherapy or radiation you MUST talk to your Onc before taking any thing it can alter the effects of both chemotherapy and radiation or before a surgery many things must be stopped..
This includes fruits and teas and a huge list of herbs and vitamins.
Also for children any tea, vitamin, herb, food changes need to be talked over with a ped Onc.

Ways to save money...
I live in California I have two markets I go to.
One is Whole Foods *Or lovingly named by many whole paycheck* It is very over priced and many thing are not organic.
Trader Joe's market I went to yesterday and I saved a huge amount of money on meats and veggies. I will not be going back to Whole Foods much now unless Trader Joe's doesn't have what I am after.

I have found that you must read what you are buying because some say "Natural" this is far from organic and does make a difference.

Things I have been told to not do and it is a standard also for many patents with sarcoma/cancer

No smoking cigarettes and if you are in the state of California and using medicinal marijuana please talk to your doctor you do not need to smoke it.

Drinking alcohol...

No caffeine...

No sugar.. This would also include fruits that are off season and bananas that are over ripe. Also most fruit juices are bad read the labble.

No white breads, cookies and other treats.

Fun thing to do if you have a child or being myself basically an adult child I want something sweet so try .... Almond butter with sliced apples or bananas.
For hot days if you have a juicer get an ice tray and fill I with lemons and mint that you have putt thru the juicer an then a small amount of honey and freeze it with a toothpick with both ends of the toothpick dulled so kids wont get hurt.

Also sugars in your blood *as Olga just posted in another topic* http://www.cureasps.org/forum/viewtopic.php?f=2&t=417
Breads and grains must be used with caution they will bring the sugars up in the blood. I am not really clear yet on what to eat for good grains and I hope that someone can post this here
I am eating a bread called Ezekiel bread organic.

Diets...
These diets are very hard to fallow and for every patient they very. If a diet like Johanna Budwig’s Flax Diet is started you MUST stay on it and not eat outside the diet. Use caution with every diet you chose. This diet I know well my sister was on it and it was great yet very very hard to do and must be fallowed for at least five years. * So I am told* I am not talking about just doing the flax oil and cottage cheese breakfast I am speaking of the whole diet its self.
Just doing the breakfast alone is fine If you are using the flax seed oil try and get organic, cold expeller pressed with no flavor.

Here is what I am taking as of now

Omega oils 1 X 1 a day
Bio Function Gt 1 pill X 2 a day
Cardio plus 2 pills X 3 a day
Goto Kola taking as directed on the bottle
Green Vibrance take as directed on the bottle
I am trying to drink at least 5 cups of organic de calf green tea a day.
A lot of water and *no fluoride*

This is just a start and when the list grows I will add this to the post.

Breakfast..
In bender 4 oz cottage cheese and two tablespoons of flax oil. Blend very well. *Every day! Yuck, lol*
*In her diet she said to also use the flax seed I cant stand them*
Put in a bowl and add a few tea spoons of granola with almonds and a hand full of Bluerberrys and then a cut up banana.
Organic green tea with caffeine * I know no caffeine but the radiation has made me sleepy*

Lunch...
Is usually eggs cooked in a small amount of olive oil. Cut up tomatoes with fresh basal and melted cheese on top. any healthy green drink. or juice.

Dinner...
Organic Chicken or beef, steamed veggies and salad.
Last night garlic baked french fries.. so good! lol
Pasta wit a lot of veggies in it.
Curry's... this is a quick Google search for you http://scholar.google.com/scholar?q=cur ... i=scholart

Also, remove as much stress you can from your life.
Exercise if you can and take cat naps.

I know this a lot to read it is for me also and there is so much more!

Please, post what you are also doing so we can all compair notes

In healing hopes for all!

Amanda R

Amanda, I understand your desire to do something to improve your chances to survive, but really all these books and theories are unproven at all, who said that they will not be harmful instead of being helpful? And it is a very simplified approach to the diet overall - for example when you speak about the sugar it is better to use GI (glycemic index) as most of the carbs content of the food minus fiber is converted into the sugar even if you do not eat anything sweet. I know that it keep the patient occupied and gives him the feeling that he is in control but it is simply not true.
Your said yourself that your oncologist said to you keep doing what you are doing as you body kept that rib tumor from the spread but as I understood from your previous diet description you had been eating whatever you wanted before with the sweet tooth - and your body kept that tumor from the spreading...Isn't that the proof that we do not know how the diet influence ASPS if at all?

Hello Olga,
I am trying to be healthy and looking for immune system help in any way i can. One reason is to heal from the surgerys and radiation.
The other is i do feel that the immune system may have a way or either slowing or stalling cancer. But, you are right i realy do not knwo 100% if it works. I dont realy understand about the sugars as i stated in my post and will be looking into GI (glycemic index) as you sugjested. I also dont know if this will help with a cancer that is not hormone based :/ I will be asking my doctor tomorrow. Thank you for the information about the sugar and also the questioning about if this would actually even do harm.

Amanda R

Olga wrote:Amanda, I understand your desire to do something to improve your chances to survive, but really all these books and theories are unproven at all, who said that they will not be harmful instead of being helpful? And it is a very simplified approach to the diet overall - for example when you speak about the sugar it is better to use GI (glycemic index) as most of the carbs content of the food minus fiber is converted into the sugar even if you do not eat anything sweet. I know that it keep the patient occupied and gives him the feeling that he is in control but it is simply not true.
Your said yourself that your oncologist said to you keep doing what you are doing as you body kept that rib tumor from the spread but as I understood from your previous diet description you had been eating whatever you wanted before with the sweet tooth - and your body kept that tumor from the spreading...Isn't that the proof that we do not know how the diet influence ASPS if at all?

Yes Amanda, also ask this doctor tomorrow if ASPS is hormone-sensitive cancer and if he gives you ANY definitive answer you can just walk away because not only it is unknown and unstudied but also because in the rare cases when people were trying to find out, we had a case when one person had found out that the primary was estrogen-positive and the lung metastases were estrogen-negative. And keep in mind that there are other hormones besides sex-hormones - for example thyroid seems to play some role in ASPS but we do not what and how.

I too have been reading about the relationship between diet/lifestyle and cancer, and while there are no definitive answers, I don't want to rule out the possibility either. We just don't know enough at this point in time.

In general, we try to eat healthy. Staying away from sugar made sense because sugar is just empty calories and we will be better off eating something more wholesome.We have anyway switched from white rice to brown rice, white to brown bread even before the dx and that continues. Adding some flax seeds in the morning breakfast seemed like a good idea,its such a good source of omega fatty acids, so we are doing something close to the budwig's breakfast.
There are certain diets which suggests to eat raw foods(fruits, veges, sprouts, nuts) with each meal in addition to a smaller portion of cooked meal.

When we have such a dx, we want to do whatever best we can, it is a very complex disease and while healthy eating is not going to cure it, it might help. Sree, however,is not on any supplements(vitamins/herbs etc).

Yes, we do not know this time and we also do not know if the modifications we do will have positive or negative survival effect. ASPS patients are often perfectly healthy when Dx and I am not sure that their good working immune system is not used by this sarcoma to attract something it is needed. Besides it can not be assumed that the same approach that is used to try to prevent cancer will be useful for the people that have cancer, that it will work the same way. Some alternative medicine doctors keep prescribing vitamins and supplements although there are the evidence of its negative effects that they just do not aware about. For example look at this bran new article about folic acid supplementation:
Effect of folic acid supplementation on the progression of colorectal aberrant crypt foci.
http://www.ncbi.nlm.nih.gov/pubmed/19541855
I am sure that if we ask about it any of alternative medicine doctors, most of them will not be aware of these findings, there are lots of other examples.
Omega fatty acids is the other supplement that is very highly regarded by most of the doctors but look at this article, they found that at least in the colorectal cancer prevention study Omega-3 worked opposite - the alpha-linolenic acid, the primary contributor to total omega-3 intake, was associated with increased risk in women for quartiles 2 through 4 versus the lowest quartile. It just highlights that this all subject is highly controversial and most our assumptions are biased and in reality we have no idea what the result could be.

Olga wrote:Amanda, I understand your desire to do something to improve your chances to survive, but really all these books and theories are unproven at all, who said that they will not be harmful instead of being helpful? And it is a very simplified approach to the diet overall - for example when you speak about the sugar it is better to use GI (glycemic index) as most of the carbs content of the food minus fiber is converted into the sugar even if you do not eat anything sweet. I know that it keep the patient occupied and gives him the feeling that he is in control but it is simply not true.
Your said yourself that your oncologist said to you keep doing what you are doing as you body kept that rib tumor from the spread but as I understood from your previous diet description you had been eating whatever you wanted before with the sweet tooth - and your body kept that tumor from the spreading...Isn't that the proof that we do not know how the diet influence ASPS if at all?

Hello Olga,
I am sorry it has taken so long to respond...
My sugar intake sence the age of fiffteen has been very low. The sweet tooth is once a month It consists of an organtic sugar cookie. Ok, a lot of them But, for the most part i have allways eaten very healthy sence the age of fiffteen.

The things i am useing are not herbs a but one and i still have not started that because of what you posted. I agree 100% that herbs in some cases can be very dangerous not just for cancer but in general. This is why i wanted this thread also. Mixing of some herbs can be very dangerous if done wrong!

The Cardio and Green are vitamins and after talking to my Dr and also letting him know that hormones may play a role in ASPS i am not going to be taking a thing that will effect me in these areas. I didnt need to walk out of his office because he is reading also on ASPS and has said what everyone else is. "ASPS doesnt have enough research to say if this will work or not" Hence, we look at things one at a time. The meds were to boost my immune system for healing before and after surgery.

When you said that it maybe also thyroid related would that be low or high?

I strongly feel a very healthy diet is important in healing from surgerys and stress and a list of other wonderful things that are given to use when we get ASPS. The immune system is also very very important!

Also, a lot of water should be used when you have any form of cancer!

Maybe what should also be posted are wonderful things we are making and cooking that are very good for the immune system and we can all share and do. Also, not have the thread as Herbs?

I am going the green tea as Fernett posted also. Many cancer paitents that do not have ASPS also do this and in some people they have stated they feel it has helped them.
The Flax oil is being also used by many and it does have the Omega posted in this thread and i am still tryng when i have time to look in to this deeper.

I think the best way to help eachother is to share and to give advice and for everyone to clearly understand that this is up to you to try and this is what i am doing. Not this is a cure all. I never stated that and never would ...

AmandaR