Cure Alveolar Soft Part Sarcoma International (iCureASPS)

p.s. Re: diet

There is an idea that IGF would be helpful in ASPS because adding insulin to cultured ASPS increases proliferation (Vistica research) and ASPS expresses insulin-like growth factor receptors. We sent one lung met for IGFR testing - and in that one nodule 50% was positive. Now which 50% is the question. There's an idea that IGF is expressed in the stem cells - the cells that continue to divide.

But the problem with most IGF-life growth factor receptor inhibitors is that they aren't strong enough (at least that has been the problem in whole animal and people trials) - so having a low sugar diet may be especially important to add to the effect.

When 'K' was on R1507 and tumors were shrinking, we avoided high fructose corn syrup and limited milk (high IGF) - and substituted soy milk whenever we could. She lost weight on R1507 and her largest tumors shrunk.

Recently, some have raise the possibility of metformin as being effective in lung cancers. It seems to help non small cell lung cancer - and has the advantage that it doesn't cause hypoglycemia (some people take it for weight loss).

I think it's generally good information to reduce your sugar intake and to exercise. Some of our members who have been grappling with this disease for years are also very physically active - like Ivan and Clare. Andreas Kontoleon also told me he really got into exercise and his ASPS stabilized (also did low sugar diet + supplements). Our daughter is happy that she has more endurance than some of her team members on volleyball - she's definitely got better endurance than 2-3 years ago when she was diagnosed. We thinking it was best to let her take it easy - now we think the reverse!

'F', I don't think there is any evidence to suggest that being active slows down the progress of the disease. What it does, however, is allow you to take the necessary measures. In my case, the aerobic exercise trains the lungs, so I have good pulmonary capacity regardless of the fact that I had 200+ mets resected in 5 thoracotomies. So the effect, if it exists, is indirect. Regardless, I think it's a good idea for everyone to exercise, and eat healthy. Indirectly, it still improves your chances. Also, exercise makes people happy, more confident, and satisfied. That's especially important for patients.

There is quite a lot of evidence that suggests that exercise could be beneficial in general in cancer.

"Exercise enhances cancer treatment- A compelling body of evidence shows that exercise during and after treatment for cancer is safe and beneficial, even for those undergoing complex procedures such as stem cell transplants. Cancer patients who have been told to rest and avoid exercise can—and should—find ways to be physically active both during and after treatment, according to new national guidelines...."

I highly recommend the book Anticancer, too.

http://www.cancer.gov/ncicancerbulletin/062910/page5

http://www.futurity.org/health-medicine ... treatment/

'F' wrote:There is quite a lot of evidence that suggests that exercise could be beneficial in general in cancer.

"Exercise enhances cancer treatment- A compelling body of evidence shows that exercise during and after treatment for cancer is safe and beneficial, even for those undergoing complex procedures such as stem cell transplants. Cancer patients who have been told to rest and avoid exercise can—and should—find ways to be physically active both during and after treatment, according to new national guidelines...."

I highly recommend the book Anticancer, too.

http://www.cancer.gov/ncicancerbulletin/062910/page5

http://www.futurity.org/health-medicine ... treatment/

I read that article just now. I think that "suggests" and "could" is exactly right. Basically, we are decades away from hearing anything close to conclusive evidence (if such a thing even exists in medicine at all).

I am not even sure how relevant these studies are to us ASPS patients. From what I can tell, most of us are young and otherwise healthy. While many of these exercise studies seem to be focusing on obese, diabetics, older people, etc. That's the type of people who constitute the majority of the worldwide cancer patient population. Also the type of exercise they advocate - walking, gardening - seriously? That's the kind of stuff I do 2-3 weeks after a thoracotomy My opinion is that ASPS patients should be far more active than that. Take up real sports like running, biking, swimming, etc. Just an unsubstantiated opinion.

As a way of slowing down ASPS development - exercise is sure as hell is not working for me. If growth rate was correlated with activity levels, then my tumors would not grow What works is aggressive surgery. I am sure that if I didn't go to Dr. Rolle in 2005 I would probably be dead by now. If I sat at home wasting my time thinking about what I should eat, researching alternative "medicine", and thinking that exercise could slow down the cancer, rather than considering real medical options - I would be dead for sure. So, in my opinion, WHEN IT COMES TO CONTROLLING CANCER GROWTH, devote 99.99% of time to scientifically proven treatments which work, and all this diet alternative medicine stuff - 0.01% is too much time for to it. I am not convinced that the majority of people have a clear understanding of the relative significance of these two things: science vs alternative medicine. I think that 0.01% is giving the latter far too much credit, in my opinion.

Regarding reading any personal-journey type inspirational books by survivors. In my opinion, they are only useful for making you feel better. I would be very skeptical about looking for any sound advice on treatment there. Of course, I haven't read the book, but look at it this way. The actual reason that guy wrote that book is because he survived. Whatever alternative medicine stuff he did, food he ate, etc, may or may not have had an effect on that. Just because he advocates whatever he advocates doesn't mean it actually worked for him. For him to make that claim, his regimen needs to be applied to 10000 people. The fact that he survived is no more proof that it works than the fact that I like to pick on my nose and I'm still around after 7 years.

Pharmaceutical companies spend billions of dollars, employ top scientists who do decades of research developing drugs. These guys devote their whole careers to thinking about how cancer develops and grows, and they have PhD degrees in relevant fields. Most of these drugs fail Phase 1 studies. That's a bunch of professionals working for years, and they still FAIL 99% of the time. Just based on this fact alone, it's blatantly obvious to me that the answer cannot be as simple as a diet once you actually develop cancer (a diet could lower your chances of developing it). Just regulating the intake of stuff doesn't affect the complex interactions which go on inside. Furthermore, even IF such a diet actually existed there is absolutely no way for us to arrive at it. We don't have the facilities, knowledge, the number of participants, we don't employ scientific methods, etc. There is no way we could figure out a diet which slows down the growth rate, even if it exists (maybe it doesn't). The level of evidence is beyond laughable.

If we discuss diet, we need to discuss, and link, to peer reviewed scientific studies on the subject. Other than that, it's fruitless to discuss a diet hoping for it to have any effect on cancer growth rate - positive, or negative. Random poking around could make things worse too. For us ASPS patients, there is no hope for this type of study to happen - ever - just based on our numbers alone. My way of looking at it is simple: eat healthy and exercise - regardless of whether you have cancer or not. Keeping that in mind, have no expectations whatsoever for this to have any effect on tumor growth rate. It will improve your quality of life either way.

~ This post i moved so it would be in this thread and the Ced folder ~

Hello Sky
I was at a point on wild amounts of vitamins and that was the time that they said my scans looked maybe a small amount different so i am a firm believer in food and eating the food that gives health and strong immune systems Are bodies are amasing they clearly know what to do and how to do it i am sure better then many doctors. I had cravings and did have then for greens and other odd things when my cancer was growing and i had no iodea it was there.. I have no idea if it was my bodying asking for help or a fluke but I would have made a cow proud lol Keeping are bodies ballanced and also alkaline is important. I have a doctor here that i see and he helps me do this and if you would like to talk to him mail me off the boards and i will give oy his info. He is and MD but not a regular doctor he is one of the most positive loving people i have ever met. I cal him my hippie doctor Eat well and get outside in the sun and laugh Green cleaning supplies also are important the fumes from the other things can not be dong good to any lung paitent.
Also, herbs and some vitamine can actually harm you if done wrong i have sadly seen the after math of this.

I hope thay they get back to you soon with an ok for the Sutent...
I still cant get over the wait for an ok from a buissness that thinks they some how know
better then your doctor >< I still have no idea how this can even be legal but they are doing it ...

I don't think anyone here, from anything that i've read so far, is meaning to discuss changing diet as a cure for ASPS, especially not in place of surgery or conventional treatments. but i do believe that by placing such a heavy emphasis on the need for peer-reviewed research is blocking any meaningful discussion on this topic. i think most people on here are looking at diet and exercise as a supplement to whatever treatment they are on, and there probably wouldn't be any meaningful studies on diet and ASPS, as there is no return on investment. are there any japanese ASPS patients out there? because i think japan is very good about integrating herbs and chinese medicines into what we would consider conventional treatments. there was a johns hopkins study on broccoli sprouts and anti-cancer properties. how does this affect ASPS? don't know, probably not. will there be a study? probably not. will it hurt you to eat a few sprouts with your dinner? NO. they are nutrient-packed anyways and tasty. same thing goes for lots of tasty herbs, spices, mushrooms, plants that you would probably have for dinner anyways.
the point is, i think people are eating healthy anyways and many are adding supplements, and discussion of this type, because not scientifically backed up, is completely shut down. for people on these drug trials, the only factor researchers and readers are following is the drug, and negative dietary interactions, and NOT positive activities in diet and exercise because the burden of proof is just way too high, especially since their research funding is just for the drug itself. it would be meaningful for us anyways to have this information available. right now, i think this kind of discussion is done offline, but it would be nice if how people are changing their diets was not silenced or looked down-upon, and could be followed by everyone. nobody is expecting a cure from diet changes, and everyone should do their own research before incorporating anything.

lucio's appointment with dr. lee is sept. 30, everything else is still up in the air. hopefully we'll get word from the case manager next week regarding sutent.

Dear Skyflower,
I don't think that anyone on this Board is "blocking any meaningful discussion" on diet and supplements as they relate to ASPS, or that people who advocate eating healthy and taking supplements are "silenced or looked down-upon", because everyone is certainly entitled to their own opinions and we welcome any and all opinions and information which can help guide us in making the best decisions based on our own personal situations and needs. However, there is documented research and anecdotal patient information which indicates that nutritional and herbal supplements can actually strengthen the cancer cells as well as the healthy cells, and there can be a negative interaction of some supplements and herbs with some chemo medications, so taking any nutritional supplements should definitely be discussed with the patient's oncologist. I personally know of at least two ASPS patients who were being treated by naturopathic doctors with large doses of vitamins, supplements, and herbal remedies who experienced aggressive disease progression while on their naturopathic treatments, but this may have been coincidental. As you have indicated, not enough studies have been done and there is not enough research data available at this time to make absolute conclusions one way or the other so we can certainly all benefit from open discussions on this subject. I would encourage you to establish a topic on the Discussion Board where people can share researched and anecdotal experience information on diet, supplements, and exercise as they relate to the effect they may or may not have on ASPS.
My special thoughts and very best wishes are with Lucio for a positive outcome to his September appointment with Dr. Lee and the results of the Sutent appeal, and I will be anxiously awaiting your next update. Take care.
With special caring thoughts and continued Hope,
Bonni

skyflower wrote:I don't think anyone here, from anything that i've read so far, is meaning to discuss changing diet as a cure for ASPS, especially not in place of surgery or conventional treatments. but i do believe that by placing such a heavy emphasis on the need for peer-reviewed research is blocking any meaningful discussion on this topic. i think most people on here are looking at diet and exercise as a supplement to whatever treatment they are on, and there probably wouldn't be any meaningful studies on diet and ASPS, as there is no return on investment. are there any japanese ASPS patients out there? because i think japan is very good about integrating herbs and chinese medicines into what we would consider conventional treatments. there was a johns hopkins study on broccoli sprouts and anti-cancer properties. how does this affect ASPS? don't know, probably not. will there be a study? probably not. will it hurt you to eat a few sprouts with your dinner? NO. they are nutrient-packed anyways and tasty. same thing goes for lots of tasty herbs, spices, mushrooms, plants that you would probably have for dinner anyways.
the point is, i think people are eating healthy anyways and many are adding supplements, and discussion of this type, because not scientifically backed up, is completely shut down. for people on these drug trials, the only factor researchers and readers are following is the drug, and negative dietary interactions, and NOT positive activities in diet and exercise because the burden of proof is just way too high, especially since their research funding is just for the drug itself. it would be meaningful for us anyways to have this information available. right now, i think this kind of discussion is done offline, but it would be nice if how people are changing their diets was not silenced or looked down-upon, and could be followed by everyone. nobody is expecting a cure from diet changes, and everyone should do their own research before incorporating anything.
lucio's appointment with dr. lee is sept. 30, everything else is still up in the air. hopefully we'll get word from the case manager next week regarding sutent.

I think that, basically, you agree with me. As long as there is a clear understanding that diet and exercise do not have any known effect on ASPS tumor growth rate, it's all good by me. I've mentioned many times that I am proponent of a healthy diet, and exercise. However, this has absolutely nothing to do with the fact that I have ASPS. What does play a role is that diet and exercise make you healthy in general. Being in good general health is definitely helpful in a slow-growing cancer such as the one we are faced with. We do have an appropriate forum for that discussion: http://cureasps.org/forum/viewforum.php?f=53

Best of luck regarding sutent!

Amanda, when you got an hour of free time, have a look at this http://www.youtube.com/watch?v=gt6W7eJ_E0A Tell me what you think of it.

'F' wrote:There are some very vocal members of this site - it is a pity some discussions seem to be suppressed. The discussion of diet, exercise, and supplements has been a hot button issue in the past at this site. Some of our conversations have had to take place through email instead of here.

FYI there are strong advocates of exercise, supplements, diet, and conventional therapies who have seen their ASPS stabilize - some have given me permission to share their emails.

Ultimately with cancer, it's wise to be aware that your experience may differ. Some of us do like to hear different points-of-view rather than having to take discussion off-list though.

Can I offer my experience too? I've exercised probably more than any other ASPS patient in the world, I eat healthy food (last time I drank pop, ate chips, fries, etc was years ago), I spend as much time in the sun as possible. I've done yoga, even. My ASPS has been growing nicely along. I didn't stabilize, or anything. So, based on my personal experience, wouldn't it make sense to encourage people to eat crap food, sit on their ass all day, etc? You have my full permission to share this with absolutely anyone In fact, I encourage it, because providing a balanced view on an issue is important. If you look at the positives, but don't consider the negatives, then you are not examining the full evidence. I am still not sure why oh why you would want to mention experiences of dozens of people under different circumstances, etc. How significant is this? Surely, it cannot be significant to the course of the disease.

Arguing and suppressing are different things. Suppressing would be posts on the topic being deleted, or a user being banned. I don't think anyone is interested in suppressing anyone on this site. In fact, I would rather ENCOURAGE discussion on the site rather than through email. This way everyone can hear different sides of the story.

Truth can only be established through argument, scrutiny, and careful consideration of the facts. If statements go unchallenged, who is to know what their value is?

Dear ASPS Community Friends,
I am in agreement with Ivan's statements on this issue that "providing a balanced view on an issue is important. If you look at the positives, but don't consider the negatives, then you are not examining the full evidence. Arguing and suppressing are different things. Suppressing would be posts on the topic being deleted, or a user being banned. I don't think anyone is interested in suppressing anyone on this site. In fact, I would rather ENCOURAGE discussion on the site rather than through email. This way everyone can hear different sides of the story. Truth can only be established through argument, scrutiny, and careful consideration of the facts. If statements go unchallenged, who is to know what their value is."
I am very perplexed and dismayed by the allusions/allegations which have been made regarding the suppressing of information on this Board. Since there is obviously conflicting research data, anecdotal experiences, and opinions regarding the issue of the benefit/lack of benefit of diet/exercise/and nutritional supplements as it relates to cancer and specifically to ASPS, the more information which is presented and the more discussion which is generated, whether pro or con, the more we all can learn and the more knowledgeable we all will be in making our personal decisions regarding this matter. Shared information and discussion is one of the very important functions of this Web site, and it is strongly encouraged whether or not everyone may be in agreement. However,I do think that the discussion on this topic should be moved from Lucio's Personal Updates to a more appropriate area on the Discussion Forum.
With special caring and continued Hope,
Bonni

Hi Hi,
Ivan, it is from that link you pointed out (diet and lifestyle) that i felt talking about herbal supplements (as well as diet and lifestyle changes) was taboo. i know that i am not alone in this, as there are so few postings regarding this topic. on some of these items we might be on the same page, but not for the big issues, which is having an open discussion, not necessarily an argument, about treatment alternatives.
in my opinion, unfortunately there is no scientifically proven treatment which will work, which is why alternatives are sought. also unfortunately i am probably not as educated as you or other posters, as i am not a doctor or in anyway involved in medicine, so my opinion means squat. but i do believe that documenting the various strategies people are taking to deal with this horrible disease are of value- if not now, later. if a treatment didn't work for someone, shouldn't we seek to find out why? if a treatment worked for someone, wouldn't we also want to know why? further study might be able to conclude the causes, but unless a possible cause/effect relationship is even established this would not even be on the research radar.
and i do not believe that you should preach laziness or bad eating habits and highlight yourself as a case for why caring about it doesn't work. because you have not established that diet and exercise are not keeping your mets from raging out of control, and i don't think that you should.
we are very interested to hear what alternatives people are using, and we do understand that if we try anything mentioned the outcome is strictly our personal responsibility. i would especially like to hear from the 15+ year survivors, especially if they are a couple years out from their use of traditional medicine therapies. do they use the do-nothing approach? do they use any alternative treatments? are they on the low-sugar diet? etc.

Bonni, i am very sorry i feel the way i do about being uncomfortable about discussing this topic on the boards. it is interesting enough and widespread enough that i think people really should feel open about posting what they are doing without being criticized because of the lack of scientific research to back up what they are doing. i hope that more effort is placed in this regard because it really adds to the treatment story. do you have a link available for the people that were negatively affected by vitamins and supplements, or do they wish to remain anonymous? the diet and lifestyle topic would be perfect for this subject, but i wonder if people are feeling as alienated as we are for posting or even querying, since there really have been so few posts.
when lucio was on cediranib, he did not take any additional vitamins or supplements before, during, or after (stopping trial). previously, when he was stable, there were supplements and a low-sugar diet. when he got complacent and lazy about it, there was growth. are these related? we have no idea. but in working towards a cure i think these factors should be investigated, especially if it's a shared phenomenon.
thanks amanda, we already do most of that stuff too. and we have recently finished with the last of our chemical cleaners so everything is green lucio had himself a hippy doctor. i question whether she was just trying to sell him over-priced supplements, so we followed up on all of her recommendations with some good, solid research. it's been a while now though, so i'm thinking i need to research whether there's an outcome to their efficacy.

skyflower wrote:Ivan, it is from that link you pointed out (diet and lifestyle) that i felt talking about herbal supplements (as well as diet and lifestyle changes) was taboo. i know that i am not alone in this, as there are so few postings regarding this topic. on some of these items we might be on the same page, but not for the big issues, which is having an open discussion, not necessarily an argument, about treatment alternatives.

Let me explain my personal position, and what I believe to be the principles on which this site was founded on. We strive to provide reliable, and as much as possible scientific, information regarding ASPS. Also this is a forum for discussing subjective issues. Therefore, we can classify our content roughly into two categories:

1) Scientific content: research articles, approved treatment options (ablation, surgery, antiangiogenic drugs), etc.
2) Personal content: emotional support, experiences with doctors, severeness of side effects (e.g. cediranib), etc.

I am a firm believer that ONLY things which have been validated by strict scientific methods should be considered as treatment options. There is a reason why average life expectancy has doubled in the last century. That reason is science, and the application of evidence-based scientific methods.

On the general sarcoma board, we've seen some people over the years, who opt for alternative medicine and have rejected conventional medicine because they didn't like what the doctors told them. They believed crooks who promised them cures. As far as I know, many of them are now dead. I think it's a tragedy, and I want to do my best to avoid this from happening to anyone.

I support a healthy diet, and exercise. I don't support supplements. Regardless, I am confident that these things should be FIRMLY in the second category on this board unless they are elevated from there by relevant (this is key) scientific studies. That is to say, that whatever your take is on supplements, alternative stuff - it should never ever have any effect on your decisions in the category of what scientific treatment options you choose.

in my opinion, unfortunately there is no scientifically proven treatment which will work, which is why alternatives are sought. also unfortunately i am probably not as educated as you or other posters, as i am not a doctor or in anyway involved in medicine, so my opinion means squat.

Well, that's just not true. There are proven treatments which work. Surgery is an obvious one. Now we have cediranib, and sunitinib. Ablations (a recent development) are great too, in some cases. We have embolization, radiation treatment, etc. I am sure more will follow!

Just because there is a gap in approved treatment options, doesn't mean that it's helpful to fill that gap with unscientific things and just HOPE that it will help. Why so optimistic? It's got exactly the same chance of doing nothing, or making things worse. As a matter of fact, in some situations doing absolutely nothing IS the best option.

You can have an educated opinion, or an uneducated opinion. Educated would be based on scientific articles, talking to reputable medical doctors, consulting with your oncologist (if you have a good one). Uneducated would be believing a faith healer, a supplements commercial, or someone's unsubstantiated personal opinion. ("Oh... it worked for me!", "Oh it saved a friend's friend life!" Really? They don't know whether it worked for them.)

but i do believe that documenting the various strategies people are taking to deal with this horrible disease are of value- if not now, later. if a treatment didn't work for someone, shouldn't we seek to find out why? if a treatment worked for someone, wouldn't we also want to know why? further study might be able to conclude the causes, but unless a possible cause/effect relationship is even established this would not even be on the research radar.

Actually, it depends. If someone chooses one of the following treatment options: (1) go to a prayer group and do absolutely nothing else, (2) take some random supplement, claimed to kill cancer cells. Would you like to document the effects of that? Is that of any value? In some cases, you need to learn from other people's mistakes, rather than draw on their experiences. Now, if someone fights the disease via every available avenue in a very difficult condition, such as Brittany, then you can definitely draw on their experiences.

You are absolutely correct about cause and effect relationships. It's very difficult, even in a big study, to conclusively determine that. For example, do those patients who exercise live longer because they exercise? Or are they able to exercise because their disease is under control?

and i do not believe that you should preach laziness or bad eating habits and highlight yourself as a case for why caring about it doesn't work. because you have not established that diet and exercise are not keeping your mets from raging out of control, and i don't think that you should.

Well, of course. I would never recommend anything which is a non-approved treatment option to anyone based on my personal experience when it comes to controlling the rate of ASPS growth. I do recommend exercise to people because aerobic exercise increases lung capacity, and lung health is important for ASPS patients.

we are very interested to hear what alternatives people are using, and we do understand that if we try anything mentioned the outcome is strictly our personal responsibility. i would especially like to hear from the 15+ year survivors, especially if they are a couple years out from their use of traditional medicine therapies. do they use the do-nothing approach? do they use any alternative treatments? are they on the low-sugar diet? etc.

Out of all of them, you will probably not find two which are doing the same thing, just because of how different personal circumstances are. That should tell you something

ASPS is an unpredictable disease. Just to point out, I believe that NONE of those people survived by their use of alternative medicine. They all had surgery, some chemo, etc.

it is interesting enough and widespread enough that i think people really should feel open about posting what they are doing without being criticized because of the lack of scientific research to back up what they are doing.

I'd like to answer that even though it's not addressed to me directly. I won't criticize anyone for taking supplements, if only for the reasons of spending money on something that probably does nothing. So long as it doesn't interfere with scientific treatment options and is not considered in any way an alternative treatment.

i hope that more effort is placed in this regard because it really adds to the treatment story.

I agree with you, but for different reasons. I would like to see a discussion on the subject just to make sure that people don't delve too much into alternative medicine, and abandon conventional treatment.

when lucio was on cediranib, he did not take any additional vitamins or supplements before, during, or after (stopping trial). previously, when he was stable, there were supplements and a low-sugar diet. when he got complacent and lazy about it, there was growth. are these related? we have no idea.

It's hard to imagine that they are. I know of at least one ASPS patient who has a bad diet and is stable for many years. Her name starts with Y and she doesn't post here. I have a fairly low sugar diet, and things have grown on and off whenever they've felt like it.

I just came from the week in Mexico and found this very active discussion in a thread where it does not belong, and I will move it down to a relevant part of the board later on today.

Lots of studies are being published by the MDLinx Oncology lately in regards of the diet/cancer and most of them state that they have failed to find any optimistic link between the vitamins/supplements/life style and cancer progression. My personal point on this subject is that we can not assume that ANY supplement/food regimen can have the expected suppressive/restricting influence on the cancer growth, before it is actually proven to be that way, regardless of the theory behind it.

Anything we eat/drink (or do not eat/drink) can do one of 3 things to us -

1.To promote the growth
2. To suppress the growth.
3. To do nothing.

I have no idea what do supplement/food do in different situations, people and stages of the disease. Some random examples:
Obese people with the pancreatic cancer live longer then the lean ones, physical exercise speeds the growth of the spinal metastases, immune system strength is getting used by the cancer cells to speed the growth in some situation, some vitamins speed the growth of the established lung and colon cancers despite being very actively promoted as a natural treatment just a few years ago, the same supplements are found to speed the growth in the hormone dependent prostate cancer and to slow the growth and the hormone independent prostate cancer etc. - these are just some examples that regardless of being MD or scientist or active patient we should not assume that something will benefit to our particular case and not to make the situation worse just because someone thinks it helped to him, and that doing something is always better then doing nothing.

I am a little troubled by the emotions on this thread because we have opened the separate topic for this discussion, clarified the rules and welcomed everyone to post there. This particular topic is dedicated to Lucio case and any non-relevant posts here make it not-readable and sway away the discussion from the important matter of how he would need to proceed. I have some comments re. his situation that I will make separately after the irrelevant discussion is moved to where it belongs.

I am not trying to be offensive, but I do have some tough questions below. ASPS is a difficult disease to navigate, and it helps to discuss things with others.

'F' wrote:I have felt intimidated from posting any information about supplements, diet, exercise - because of these strong and forceful posts by Ivan, Olga, and even Bonnie on this issue (all of you are moderators too) - and I know I'm not alone. Several members have contacted me off list and we've had to take our discussion there. Ivan, I'm glad you won't delete our posts and will let us continue the discussion.

I think that if you hold a particular point of view, you should be prepared to dispute it rigorously with those who disagree with you. Otherwise, how do you know that you are not mistaken in your reasoning? That's the essence of peer review. Those scientists who write and submit papers are experts in their fields. They don't feel intimidated, so why should you? Furthermore, you are a trained medical doctor, so obviously you should be able to argue most effectively against me, Olga, or Bonni in what is your area of expertise.

I am one of the few (?only) MD's in this forum and I have molecular biology experience, but felt I was not welcome to share information that might be valuable about what we learned about lifestyle / diet / supplements in addition to conventional therapies.

You are most certainly welcome to share all and any information! However, as you say, it may be relevant. And, of course, others may question it

We also had personal experience - initially more rapid growth (without diet changes / supplements) - then stability with the diet and other changes. Recently we were told that we were the record holders for being on R1507 the longest at Oregon Health Sciences and now we're the record holders at Seattle Childrens for being on Crizotinib the longest. In the old days (regular bad diet, no exercise), we were not record holders and had to do surgery quickly to treat growth.

First of all, I am sure you know that I am extremely happy that 'K' is doing well.

The most obvious and significant change was the fact that she had surgery. Also, she's going through puberty, could that be playing a role with the oscillating hormone levels?

Finally, she's was/is enrolled in clinical studies. Perhaps they are having an effect? Perhaps the disease is just passing through a period of inactivity? I am sure there are a million other things going on, too. What makes you think that diet and exercise are the precise factors which caused an apparent slowing down of tumor growth?

I will attach some of the articles we collected along the way. Some are very technical scientific papers - but we read everything. ASPS is such a rare cancer that we won't have widespread trials like the more common types. ASPS does share common features with other solid tumors that can become metastatic. Renal CA, but also lung, prostate, ovarian, breast etc. All of these cancers are susceptible to antiangiogenesis agents too.

I think it's important to be as selective as possible. Otherwise, we risk turning "science" into "science fiction". Thankfully, we have cediranib now, which seems reasonably effective.

I will attach articles are Curcumin / Tumeric (usually with Bioperine, like Doctor's Best - the kind used in Johns Hopkins studies), Green Tea, and Lycopene (in tomatoes). But there are many many studies more than this.

There are good studies that suggest that IGF, Met, and VEGF are important in the pathogenesis of ASPS. If you would like these papers collected in this thread, let me know. I have a lot more articles, but for some reason I can't attach more than 3 to this post. There's another one for instance that shows green tea increased HIF1-alpha (was high in one of our daughter's mets) - which is downstream from VEGF. I have Lycopene (tomatoes) articles too that show it reduces insulin-like growth factor binding proteins (and so could potential anti IGF effects).

I know that there is a HUGE gap between theory and practice when it comes to treating cancer. I think you should accept that there is no way that one person could possibly bridge a gap which whole teams of researchers with million dollar budgets and formal studies struggle for decades to overcome. I think that's what you are trying to do - by reading somewhat relevant articles and then trying to devise an application of their contents to 'K''s case. As a doctor, as a scientist, do you feel like you are following due process? I think that if that were possible, fighting cancer would be as simple as taking a hammer to a test tube containing the tumor. Because in test tubes, hammers kill cancer oh so well

I'm not discouraging 'K' from drinking green tea, and eating tomatoes because I think they tasty and healthy. However, if they played a role, wouldn't you expect to see much lower incidence rates of relevant cancers in areas of the world with high tomato and green tea consumption? That should be fairly easy to spot, so I doubt that it actually happens.

The issue with the new targeted agents is that they are super selective, and may not be strong enough. For instance ARQ197 now shows some benefit in combination with another selective drug in lung cancer. In ASPS as a single agent it may have been too weak. We were interested in doing Crizotnib (met) following R1507 because we thought we might get the benefit of having the 2 different drugs in sequence if we could get a trial of the 2 together.

This sounds extremely far fetched to me. I assume that you are trained in evidence-based medicine. Can you, from a perspective of a medical doctor, explain why you want to step away from it and do this "educated guess work" instead?

I am not sure what you mean by getting a trial of the two together. You want to have a 1 person trial for 'K', or you'd like to enroll in a trial like that if it's offered?

Like Lucio, we are also in the dilemma that we can't try other IGF agents because we were already on R1507. We are hoping Crizotinib is FDA approved soon though (it helps dramatically in 90% of ALK-positive lung cancers [not ASPS]) - and we wonder if our oncologist might be willing to combine Crizotinib with metformin (reduce IGF) which is FDA-approved for diabetes and weight loss. Oncologists are talking about metformin and lung cancer because of recent data showing it could inhibit lung cancer mets.

Beyond not having any evidence that this would actually be beneficial, aren't you worried about untested drug interactions? I would be very worried.

ivan, i do not see how any of your comments can be construed as constructive. and please keep a record of these conversations here, these were all part of our next steps on proceeding with lucio's treatment before it degraded. everything that you have said is a given, everybody understands those points, but you are drilling it into our heads "not backed by science" as if that is the end all argument (like rheza with the noni). scientifically wouldn't you want to know what people are taking? to see if diet or supplements does play a role in this? but your arguments are not allowing people to be open about what is actually going on or how they are going about it, taking a drug or having a surgery is just one aspect of it. if people aren't open about what they are taking, then there is no record of what is or isn't working. as probably stated before, we're just aerospace engineers, medicine is not our field, but we are intellectually curious about this and wish this site was more open. abstinence only education does not work (even for nutritional supplements).