Cure Alveolar Soft Part Sarcoma International (iCureASPS)

An additional note, I did enjoy skimming through the book Anticancer and also bought the book Foods that Fight Cancer or something like that. When someone on the list suggested that it would be bad to do some of the alternative health things like green tea while on metronomic chemo, we dropped all of that... so nothing but metronomic chemo... and funny thing, that's when things started growing again!

So we have improved (not perfect, but hey - she's a kid) 'K''s diet and added various supplements. From the advice of Andreas Kontoleon (had ASPS with bilateral lung mets, thoracotomy to only 1 side, was inoperable on the other - then disease stabilized...now 15 years out), we started 'K' on 'Flora-Essence' a variation of Essiac tea. 'K''s other add-ons are Green Tea, Celebrex, Curcumin (maybe you don't need to take as you are Indian and eat a lot of curry?), and fish oil. She has a raspberry shake every morning before going to school (1 cup frozen raspberries, 1 cup soy milk, 1/3 banana, 1 Tbsp frozen orange juice concentrate).

Our feeling is that R1507 benefit is likely to be partial only - but may help with inhibiting new metastases or small ones that have not vascularized. Green Tea and Curcumin (has mTor activity like Afinitor) may help with the bigger ones that could be VEGF-dependent. Because R1507 is an antibody against insulin-like growth factor receptors, we think the supplements should not conflict with any of the supplements she is taking.

We tried to put her two 1.5 cm ones out of our minds - and thankfully those really haven't grown over the past 4 months. It would be nice if they shrunk a little too though - in the one posted CT of an ASPS patient responding to R1507, the shrinkage seemed to be in a met that was about 2 cm. We are curious to see how the next scans go. We increased her celebrex to 400 BID (that dose now approved for kids by the FDA for familial polyposis) and also increased her Curcumin (we were at too low levels it seems, and weren't taking it with bioperine before).

'F', I am not sure about the soy milk - about its estrogenic effects, there is a suspicion that ASPS is hormone dependent type of sarcoma any thoughts on that? And there is a cross linked stimulation between the IGF and estrogen. Also when 'K' takes low doses of the mTor-inhibitors, then her tumors might be developing resistance to it (if it works as it claimed)
http://www.ncbi.nlm.nih.gov/pubmed/19402072
and when you are ready to try some of the approved mTor-inhibitors, alone or in the combination, there might be already developed resistance to them as a class in place?
May be we need to move this discussion to a different forum, as I am sure this is the subject that most of us are thinking about.

We checked for estrogen receptors on 'K''s tumors twice and both times were negative. Low concern, but I appreciate your sharing possible concerns. You can move the discussion wherever you think is best. I just thought I would add in my 2 cents because Arch and Sree are in a similar boat to where we were...wanting to decrease the new ones, thinking about VEGF inhibition at a later step. I can't see how 1 cup of soy milk a day is going to be a problem, really. Soy would be more of a problem with an estrogen positive breast cancer though.

I do think a very good combination at least theoretically in ASPS at this stage (want to inhibit new ones, and most smaller than 1 cm) would be an mTOR + R1507, but the trials are in progress, and nothing definite yet...maybe by next year. Medications could always potentially create a conflict by affecting each others' levels, but I would think the combination of curcumin oral supplement (or curry in food) + R1507 a human monoclonal antibody infused into the blood is unlikely to affect each other. The big dilemma with curcumin is that it is hard to get good levels though. Interesting that there are some NIH-funded clinical trials with curcumin because of some beneficial results from Johns Hopkins (not in ASPS, but in another vascular solid tumor).

Supplements are expensive though, and they certainly may not do anything. I was not going to jump on the Essiac bandwagon, but as mentioned, we did talk to Andreas Kontoleon, and mentioned Flora essence, exercise, and reducing unnecessary carbs, and hey - after the growth on metronomic, we decided to try it. We were pretty happy that whatever we were doing seem to stop the growth and induce at least some minor shrinkage, whether it was the R1507 or that + diet, supplements, prayer, or the normal course of disease, we don't know. It did seem for the longest time we were showering new little mets and things were growing, so we are grateful for the relatively calm at present.

I was also surprised to see how many people reported some benefit with their solid tumors on cancer forums with some of these alternative health supplements and then the book Anticancer sold me (reasonably good science). We told 'K' that if she progresses, she can stop all the stuff. She doesn't like to take anything, not even vitamins. She has been feeling great though and decided it is not so bad ..

No estrogen receptors can change to positive as the time goes and 'K' grows. Also mets might be heterogeneous, we had a girl here - Ashley- her primary was estogen negative and lung mets were very positive.
There is some new info that not only typically hormone-sensitive cancers but also other ones like lung cancer for example can be influenced by hormones as it is seen from this article:

Oestrogen plus progestin and lung cancer in postmenopausal women (Women's Health Initiative trial): a post-hoc analysis of a randomised controlled trial

http://www.thelancet.com/journals/lance ... ct?rss=yes
They say - "Although treatment with oestrogen plus progestin in postmenopausal women did not increase incidence of lung cancer, it increased the number of deaths from lung cancer, in particular deaths from non-small-cell lung cancer".


I have no idea how estrogenic is soy milk and how much of it you need to drink to tip the scales to either side. I too have seen people reporting benefits from the staff they take and often they sell this staff. Often they grasp at the last straw and they feel and post that they are getting benefit when in reality they are not. I often see the overlapping treatments done when traditional chemotherapy is done and seems to be ineffective and patient start to take something and the following response might be the delayed response to the chemotherapy, this phenomenon is already described somewhere. Andreas Kontoleon had 2 rounds of the traditional chemotherapy before of the surgery and as per. Pf.Judson there are miracle rare responses in all sarcoma types and stages even in the most chemoresistant ones, so might be here we witness exactly this rare complete response to the chemo in ASPS and his nodules in the second lung are already dead for all these 10 years. Some light might be shed if his surgeon Dr.Evans could answer what did the pathology report say after the surgery, if the removed nodules were viable tumors or necrotic tissue.

Olga, Perhaps we should let this issue drop between us. It seems in general you do not advocate alternative approaches and I can understand that. As said, I was reluctant too - but because our daughter progressed slowly, but definitely on thoracotomy alone and then on experimental trials drugs alone, we added these things in. The nature of experimental trials is that you usually can only try one thing at a time, and then if one nodule grows over 20%, you're kicked out. Very frustrating because of molecularly heterogeneity, it is likely that 1 targeted agent will never be enough to do the trick.

It was your postings about not taking green tea that finally led me to stop at least while 'K' was on metronomic chemo, but in retrospect I think that was a mistake...the truth is - there is a good deal of research data supporting green tea as a mild anti-angiogenesis inhibitor (via VEGF)...and coincidence or not, things are now better now that she is on it again. As recognized, YMMV (Your mileage may vary).

Families do have to weigh conflicting information and it doesn't help that ASPS is so rare and that molecularly there can be quite a great deal of variation within and between patients.

There are various lines of evidence supporting the benefit of soy and sarcoma, but like many other diet-related factors - it might help a little, it will probably do nothing, but most likely won't have a strong effect either way.

Everyone has to eat something. Milk has a lot more IGF in it than soy for instance - and we are trying to block insulin-like growth factor. The problems with earlier versions of R1507-type drugs was that the block was not complete enough. So... there would especially be a rationale for not eating in a way to counteract attempts to 'starve' the cancer.

We did test estrogen and found the entire primary and at least one lung met were negative. Sure it is possible it might be induced, but most other studies with ASPS I have seen have been estrogen receptor negative...that is why tamoxifen is not used in ASPS. Also - we have not seen much change in the profiling that has occurred in 'K' over time (lung mets were profiled 3 times...for her different lung surgeries).

Yes, this is correct - I do not advocate alternative approaches only because I do not advocate anything that is unproven by the official results to be beneficial. Unlike you assume that it might help a little, it will probably do nothing, but most likely won't have a strong effect either way, there are 3 possible scenarios in ANY treatment - it may help, may do nothing and may do worse for the patient - and I do not see any reason to discard the possibility of harm if it was not proven otherwise, just because we want it to help and there is a theory behind of it as how it might work doesn't mean that it will work as expected. From the results of the clinical trials I often see that it works otherwise then expected and prolonged disease free interval may be followed by the increased speed of the growth and reduced overall survival so even temporarily success and response may be not beneficial for ASPS patient in the end if it will shorten their life in the end. It is not between you and me when this discussion is published on this board because people do read it and they do take supplements and often these are not insignificant amounts at all. So I want to reinforce what I mean - I do not support and do not oppose anything until there is any officially registered evidence in people re. how it affects overall survival at least in other cancers.
About my advise not to take green tea supplements during chemo. It was not MY opinion as I do not have any opinions on the subject. I just read and reiterate what I found to keep this board up to date with the current findings in the official studies (and not in theories but studies in people). The suggestion not to take green tee was based on the published in Journal of the National Cancer Institute 2008 100(11):773-783 COMMENTARY Should Supplemental Antioxidant Administration Be Avoided During Chemotherapy and Radiation Therapy? They conclude that the use of supplemental antioxidants during chemotherapy and radiation therapy should be discouraged because of the possibility of tumor protection and reduced survival. I posted that. You decide if this information is useful. May be it does not apply to metronomic chemotherapy as its main goal is not oxidative damage as I understand. I understand your emotions but I do not share any responsibility re. this choice because I do not advised anything but just informed that the official recommendation is not to take them, you can complain to NCI with more rationale then be upset with me.
I'll move this discussion down the Alternative medicine topic or may be remove it altogether later today as it is getting a little murky, I will have to consult with the president of the iCureASPS.

No blame. But we all have potential bias.

There were quite a lot of concerns about anti-angiogenesis agents for instance (and still are) - and some have not opted for them because of the risks. But there have been ASPS patients helped quite a bit by them now.

The truth is, cancer is risky. Sometimes when there is a weight of information pointing one way and occasional reports pointing the other, then we have to make the best decisions we can at the moment. Sometimes it will be with the majority, sometimes with the minority. Nothing is certain and YMMV - really means individuals' cancers can vary.

Dear Olga and 'F',
Perhaps we should move this discussion to another topic area other than Sree's personal updates. Regarding the green tea issue, as I had posted under the dietary restrictions for Brittany's Cediranib Clinical Trial, she was instructed not to drink green tea or to take green tea supplements while taking Cediranib as they could interfere with the effectivness of the medication. We did not question the rationale for this, but assumed that the advice was based on valid clinical evidence. I don't know if this same concern regarding possible negative effects of green tea on the effectiveness of a treatment would apply to other types of systemic treatments, but I think that it should definitely be investigated and discussed with the oncologist prior to beginning any kind of chemo treatment. I do know that there is a school of thought that theorizes that taking nutritional supplements not only strengthens the healthy cells, but also the cancer cells, which certainly makes sense, and based on that theory we have avoided nutritional supplements for Brittany as we don't want to do anything to make her cancer cells healthier! We have personally observed several situations where the patient was taking significant amounts of nutritional supplements and heartbreakingly their disease seemed to progress very rapidly. It is, of course, difficult to determine if this was just coincidental, or a natural progression of the disease completely unrelated to the nutritional supplements. There are many theories and many different approaches to trying to best fight ASPS, but unfortunately because of the rarity and unpredictable nature of this disease, there doesn't seem to be any one definitive or best answer. One of the important values of this Forum is that it allows different treatment approaches to be discussed, and although we may not always agree with each other, each person can weigh all of the information which has been offered, and try to make the best decision based on their own individual situation and experience. Thank you Olga and 'F' for all of the knowledgeable information and valued perspectives which you so generously share with this Board.
With special caring thoughts and continued Hope,
Bonni

Hello
I find that any thing my Onc doesnt give to me at this point questionable. Or anything that i take that he looks at me with an *Oh Amanda* look... I am taking many vitamins and minerals and to be honest was stable till my last scan and it has been three months that i have realy been taking this many :/ Was it what i was taking? Was it just how ASPS works in my body *shrugs*
But, i have cut way back and will do so till i feel that i am not possibly harming myself.

I will say this though. Green tea if you are going to try this use lemon in it or it doesnt work as well...
I am avoiding soy and any hormones. Because my mother and sister both had breast cancer and thats all i need on top of ASPS ...

I am back to eat well, rest well, love yourself more and relax and laugh more. This cant hurt you and it is proven that it cant and every thing you are taking via vitamins is already in foods. I just eat so much vegies that i may turn green, hehe
This topic to me is great and i would love to see this in are other area because it helped me also to read this in a few ways

We all have are individual paths with cancer and the wonderful thing about this forums is that everyone shares and expresses there feelings and thoughts! Cancer is a heated topic and this topic is very close to all of are hearts. We reach out and look for cure or a help that will releave this nightmare to make things better.

Anyone reading this please, be educated listen to your heart and your doctors.
Read what others have gone thru and then do as you shall. But, remember that some thing that works for you may not work for me and visa versa.

In healing hopes for all with cancer and holiday hugs!
Amanda

Re: more on the anti-cancer effects of soy - the question was originally raised in the setting of breast cancer which can have some positive estrogen receptors...The original article is in JAMA Dec 9 2009 - Xiao Ou Shu; Ying Zheng; Hui Cai; Kai Gu; Zhi Chen; Wei Zheng; Wei Lu. Soy Food Intake and Breast Cancer Survival. JAMA, 2009; 302 (22): 2437-2443

"The study showed that the higher a woman's intake of soy foods, the lower her chances of cancer recurrence and death. Patients with the highest intake had a 29% lower risk of death during the study period and a 32% lower risk of breast cancer recurrence compared with patients with the lowest intake of soy foods. Soy food intake was measured by either soy protein or soy isoflavone intake. Isoflavones are hormones found in plants."

The entire article from the LA Times: http://www.latimes.com/news/nationworld ... 6847.story

Soy doesn't harm, and may even help, breast cancer survivors, study finds
Earlier research in animals had raised fears that soy foods might cause a recurrence of the cancer because soy can act like estrogen. A new study of women finds just the opposite.
By Shari Roan

December 9, 2009

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Soy foods do not appear to increase the risk of breast cancer recurrence among survivors of the disease and may even confer some health benefits, new research suggests.

The study, published in today's issue of the Journal of the American Medical Assn., should reassure breast cancer survivors that they need not scrupulously avoid soy foods, which have become increasingly popular in the United States in recent years. Research in animals has indicated that soy might increase the chances of breast cancer recurrence because it can act like the hormone estrogen, which promotes tumor growth.

"Some doctors have advised women not to eat soy foods," said Dr. Xiao Ou Shu, a professor of medicine at Vanderbilt University and lead author of the paper. "But another school of physicians think it's safe. So it has been controversial. Our findings are important because, nowadays, it's very difficult to avoid soy exposure. Soy flour and soy protein has been added to many foods in this country. Women may consume it and not even know it."

Shu and her colleagues analyzed data from the Shanghai Breast Cancer Survival Study of 5,042 women in China. The breast cancer survivors were ages 20 to 75 and were followed for an average of four years.

The study showed that the higher a woman's intake of soy foods, the lower her chances of cancer recurrence and death. Patients with the highest intake had a 29% lower risk of death during the study period and a 32% lower risk of breast cancer recurrence compared with patients with the lowest intake of soy foods. Soy food intake was measured by either soy protein or soy isoflavone intake. Isoflavones are hormones found in plants.

"Isoflavones can act as estrogens and add to the circulating pool of estrogen that is available and promote tumor growth. That is the concern," said Bette J. Caan, a senior nutritional epidemiologist at Kaiser Permanente in Oakland, who was not involved in the current study.

In research released earlier this year, Caan and colleagues at UC Berkeley also found that higher soy intake was linked to lower rates of breast cancer recurrence. That study, published in the journal Breast Cancer Research and Treatment, followed almost 2,000 U.S. breast cancer survivors.

"We do not see a harmful effect of soy. That is the main message out of both studies," Caan said. "Breast cancer survivors shouldn't go out and take soy supplements, but they shouldn't be afraid to drink soy milk in their coffee or eat tofu."

Shu's study found no adverse effects from soy food intake among women whose tumors grow faster because of exposure to estrogen, called estrogen receptor-positive breast cancer, or among those whose cancers are unaffected by estrogen, called estrogen receptor-negative.

Nor were there differences in the findings among women who used the breast-cancer drug tamoxifen and those who did not. However, the study found that the drug was related to improved survival only among women who had low or moderate soy food intake, not higher intakes.

Women who did not take tamoxifen but who had the highest intake of soy food had a lower risk of death and cancer recurrence than women who had the lowest levels of soy food intake and used tamoxifen.

That soy food intake may yield benefits that are comparable to tamoxifen is noteworthy, Caan said, because some experts fear that soy intake could counteract some of the effects of tamoxifen.

"People are afraid soy might actually counteract the effects of tamoxifen because it may be competing for the same receptors," she said. "That is why [Shu's] study is so interesting. She found it did not counteract any of the benefits of tamoxifen and, at high levels, soy is as effective as tamoxifen."

Women should not stop taking tamoxifen or use soy foods to replace the medication, Caan and Shu warned. Further studies will be needed to measure the effect of soy foods with or without tamoxifen.

It's also not clear why soy may lower cancer recurrence and death rates, Shu said.

"We cannot conclude from this study that there are no negative effects" from soy, she said. "We are studying soy as a whole food. We are not studying its components. It could be some components are not good for some people. But overall, we see women who eat a high amount of soy with better outcomes."

However, the quantity and quality of soy foods differ among U.S. and Chinese women, said experts in an editorial that accompanied the study. It is also difficult to compare U.S. and Chinese women because of differences in screening rates and treatments.

"Both this study and the Kaiser Permanente study give us a little more reassurance that soy foods are safe," said the lead author of the editorial, Dr. Rachel Ballard-Barbash of the National Cancer Institute. "But on the basis of just these two studies, we can't tell women to go out and significantly increase the amount of soy they eat."

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As said, for those of you who are looking into diet, check out the Anticancer and Foods that Fight Cancer book and look at the research. There's a high amount of estrogen in regular cows' milk too. Although this post was switched to "Supplements" - this is not really correct. There's a lot of evidence that diet has more beneficial effect than taking pills or supplements. If you are a cancer patient, you have to eat something - it might make sense to eat as healthy as possible.

Also as an MD I am not by nature an alternative health person, but I was impressed by the research evidence and it seems to have helped in our situation as well.

Dear ASPS Community Friends,
I am posting a copy of an entry from the Sarcoma Alliance Discussion Board regarding the negative effects of taking dietary supplements and vitamins, especially while undergoing a systemic treatment. It confirms to me the theory which Brittany, I, and my husband have always held that by taking supplements/vitamins to strengthen the body and make it healthier, you also make the cancer cells healthier and stronger. Our personal theory seems to have been supported by our observations of some ASPS patients who were being treated by naturepathic practicioners with massive doses of vitamins and dietary supplements who heartbreakingly experienced rapid and aggressive disease progression, and it appears to be further supported by the information provided in the following Sarcoma Allinace Discussion Board entry:

Re: Soft-tissue Sarcoma...Is there safe vitamins to take...
by sunflower » Wed Feb 17, 2010 1:48 pm

When my husband was to start on chemo again thru a trial using an anti angiogenesis at MSK, we sought out an alternative doctor at Sloan to talk to. She didn't recommend the use of vitamins and supplements when getting systemic cancer treatments. Reason given was anything that helps to make your body stronger will also help make the cancer cells stronger. So not a good idea to take anything additive with the chemo drugs being used against sarcomas. Wait until you are done with the chemo and surgery and on a watch and wait due to NED (No evidence of disease), then that would be a good time to work hard to rebuild your body. Sunflower

I would strongly encourage anyone considering or currently taking vitamins and supplements to research the available information about the pros and cons and to definitely discuss it with your oncologist before taking anything that has not been recommended or authorized.
With special caring thoughts and continued Hope,
Bonni

This is intereseting
I have actually just asked my onc this question, and am looking forward to hearing the answer.

Im taking some vitamins, herbs (in the form of pills) and ginger/avocado extract, also in the form of a pill.

The logical asnwer would be, that this strenghtens the body to fight this desease. But the questions is if i supports the cancer cells too.

What is the use of antioxidanst and anti flamatory products, if you already have the cancer. I read that ginger in some way has the abulity to block the growth of tumors in the same way as TKI products.

http://www.biomedcentral.com/1472-6882/7/44

Again, I'd strongly recommend the book Anticancer which presents data and research articles, many of which you can find online.

There is a great deal of information that suggests that high levels of sugar and IGF levels (milk products have high levels of IGF for instance) has bad effects on cancer growth - and the data are even stronger for cancers that affect children and young people. David Vistica has research showing that adding IGF stimulates the growth of ASPS tumor cells in culture and in our daughter's molecular profiling, at least one lung met that was removed was positive for IGF. All these data were why we opted for R1507 the IGFR antibody study.

But what we did in addition was try to severely limit her sugar diet - she was junky sugar food before, switch her milk to non-dairy alternatives.

The history of IGFR drugs is that their inhibition of IGF-like growth factor action is partial and not complete (and does not affect the insulin receptor). Earlier generation drugs could not inhibit IGFR activation enough in tumors. We got a great response (we think) on R1507 - 2 out of 3 marker lung mets shrunk, 1 grew slightly over 9 months (this kicked us out) - and all smaller ones no growth at all because we combined diet restriction of sugar with R1507. It was a little tricky and she did have some weight loss - but we encouraged her to eat more of healhier foods.

In many cases the situation is that you will eat something whether you like it or not - particularly if you are working with an agent that is targeted, why not eat healthier rather than non-healthy foods.

In regards to some of the other tea options or supplements particularly discussed on the list - there may be pros and cons. In our situation, we always mention 'herbal teas' and no doctor has ever cared. One oncologist noted down that one of the teas was green tea. The only substances we ever considered were based on some research data suggesting efficacy in solid tumors, tumors that express VEGF, or tumors that express IGFRs - and also results of molecular profiling if that particular chemical was in our daughter's tumor.

If there is a way to take in the foods in their natural state (ie a tomato and not a lycopene pill) - that seems to be better.

I don't know about garlic. Based on the criteria we used above, the candidate list was small - green tea, curcumin, lycopene (tomatoes), celecoxib (this could potentially have side effects though and has to be prescribed). Other substances considered: Essiac tea, and vitamin D (we live in Seattle - and I found I was vitamin D deficient - vitamin D is helpful for having a healthy immune system).

It is not unreasonable - especially when people are taking some of these newer targeted agents like everything everyone is on now - that diet may help and not hinder. If the drug is weak and acting on one point in a pathway, being on a diet that also disfavors ASPS may benefit. For instance curcumin has effects on insulin binding proteins that might make a low sugar diet and even an IGFR antibody more effective.

Hi 'F'
Where can i buy this Essiac tea? Can only find the canadian, but it must be optainable in EU too.

I get my vitamin D too... In denmark they have also startet adding vitamin d to milk.

Damn im a real cheese fan, but could give it a try avoiding milk products.

Wanted to bump this topic up to discussion
I have not read the book, Anticancer and Foods that Fight Cancer' ,yet but plan on it
Also the September consumer reports has an article ' Surprising dangers of vitamins and supplements' that it worth reading
http://www.consumerreports.org/cro/maga ... /index.htm

In the USA vitamins are over the counter and not very well regulated

Food for thought
Love
Debbie