cutting edge research on immunotherapy

evertheoptimist
evertheoptimist Member Posts: 140
in Uterine/Endometrial Cancer #1
I was visiting Israel with my husband who is an Israeli last week. I just finished the first cycle of clinical trial treatment for my recurrence, and used 10 day break till the next cycle begins to have a little holiday. We were visiting friends and relatives here.

One of them was a good friend who is a physician at an integrative oncology center. She invited her friend who is a survivor of advanced cancer and also a venture capitalist. Most of you may not be aware, but Israel is known for cutting edge bio science development (together with the high tech field). This venture capitalist is a primary investor of a startup that has developed immunotherapy for cancer.

It's a long story, but in a nut shell their therapy is based on the discovery that in most cancer patients, the microphage, the cells that are supposed to devour foreign objects AND cancer cells, are somehow not activated. So, the idea was to find a way to "reactivate" microphage, and inject the hyper activated microphage into the patient. About nine months ago, his cancer came back (lung metastatis 1.5cm x 1.5cm). Instead of getting a surgery or chemo, he decided to subject himself (with questionable legality since this is NOT an approved drug yet in Israel either) to the weekly shot of this immunotherapy drug. 9 month later, a complete remission! He actually showed me, on iPad, his own scan images of lungs taken on a monthly interval.

I don't know whether you all followed on the immunotherapy angle, but in ALL the literature I read, it's always given, in cinical trials since none has been commercially approved yet, as a complementary treatment or as a supplement (as is the case for me on the clinical trial). Or in clinical trials, it may be given as a single agent PREVENTIVE treatment for those already in remission. I have YET to see a single reported case where the immunotherapy was used as a single agent THERAPEUTIC agent to deal with aggressive disease.

He said not only he is funding this start up but is also planning to be a part of the management team, since his own life depends on this company succeeding. They will be applyig for a phase II clinical trial soon.

I was blown away by the implication of this discovery - imagine, no chemo and body's own defense turned on to the maximum efficiency. I felt very hopeful. Granted, it will be years before this may becom commercially available. Granted, this treatment may not work for every case - only a certain percentage of patients. I know I can't base my hope on a single case of an amazing success.

What made me really hopeful was, a lot of really exciting things are happening, and if we just manage to buy more time with every remission or stablization of the disease, there may be a real solution around the corner.

As some one whose remission from the front line therapy only lasted 3-4 montsh, which makes me platinum resistent, this chance encounter with this venture capitalist gave me a lot of hope. He offered to have the drug available to me through the back door if I exhaust all the options..... However, that means I have to move to Israel for 6-9 months. As much as it is the case that all of my in laws in Israel are amazingly nice people, I hope it won't come to that :-) I wouldn't want to overstay my welcome to this degree !!!

Anyway, a lot of exciting stuff happening. Hang in there, and let's hope some of this wonderful initiatives truly bear fruit for all of us.

Comments

  • california_artist
    california_artist Member Posts: 816 Member
    #2
    Was considering this very thing today.
    Not about your friend per say, but about how things work. This is part of the issue of the 99%. We need to get the big guys out of the business of controlling our fates.The business of controlling what we can or cannot use to get well. We need our doctors to not have their hands tied and we need them to have the desire to learn all there is that is cutting edge in order that they can serve us to the best of their ability.

    As long as it is the FDA and the pharmaceutical companies that are in charge of who gets what money for what research and then what drugs are approved, to the people who matter in this, those with the most at stake, namely their futures, will not have the best possible care. The law on the books is that a physician can only prescribe a drug. As long as it take millions of dollars to do the research the only reason for big pharma to finance research is in search of something they can obtain a patent on. They tried to get a patent on curcumin, but thank I don't know who for stepping in and disallowing that potential disaster. Imagine if turmeric were no longer available for millions, perhaps billions of regular people to have access to, it would have been a disaster.

    So, what I was thinking has a two prong approach. First, the law threatening doctors with loss of their license and possible jail for using things that have been show to work, but do not have FDA approval, that law needs to go away and be replaced with something more reasonable. The second part would have to do with funding. Funding used to not be controlled by big business. Results weren't the property of the lab that discovered them. As a people, we need to insist that funding be provided for research using natural substances that appear to have an influence on killing cancer cells. There are foods that can booster/bulster the immune system are known, but your doctor, can't even tell you about them.

    Any research monies that I accrue, will only go to supporting research on natural substances, that don't require a patent, that cannot have a patent, that would available to all. Whatever happened to the likes of Jonas Salk? crippled and in iron lungs. He freely shared his life saving discovery with anyone and everyone. Where would we be without that. The pharmaceutical and insurance companies have us firmly in their grasp. And our well being is not nearly as interesting to either of them as is the depth of our pockets. Change will only come, if we insist on it's coming.

    The road will not be easy. It never is. The more correct the new path is, the more resistance from the old path there will be.

    I'm just saying. There are some here who know the truth of this. Please continue on your path and continue to share what you learn.

    I will always love you for your strength.

    Claudia
  • carolenk
    carolenk Member Posts: 907 Member
    #3
    california_artist said:

    Was considering this very thing today.
    Not about your friend per say, but about how things work. This is part of the issue of the 99%. We need to get the big guys out of the business of controlling our fates.The business of controlling what we can or cannot use to get well. We need our doctors to not have their hands tied and we need them to have the desire to learn all there is that is cutting edge in order that they can serve us to the best of their ability.

    As long as it is the FDA and the pharmaceutical companies that are in charge of who gets what money for what research and then what drugs are approved, to the people who matter in this, those with the most at stake, namely their futures, will not have the best possible care. The law on the books is that a physician can only prescribe a drug. As long as it take millions of dollars to do the research the only reason for big pharma to finance research is in search of something they can obtain a patent on. They tried to get a patent on curcumin, but thank I don't know who for stepping in and disallowing that potential disaster. Imagine if turmeric were no longer available for millions, perhaps billions of regular people to have access to, it would have been a disaster.

    So, what I was thinking has a two prong approach. First, the law threatening doctors with loss of their license and possible jail for using things that have been show to work, but do not have FDA approval, that law needs to go away and be replaced with something more reasonable. The second part would have to do with funding. Funding used to not be controlled by big business. Results weren't the property of the lab that discovered them. As a people, we need to insist that funding be provided for research using natural substances that appear to have an influence on killing cancer cells. There are foods that can booster/bulster the immune system are known, but your doctor, can't even tell you about them.

    Any research monies that I accrue, will only go to supporting research on natural substances, that don't require a patent, that cannot have a patent, that would available to all. Whatever happened to the likes of Jonas Salk? crippled and in iron lungs. He freely shared his life saving discovery with anyone and everyone. Where would we be without that. The pharmaceutical and insurance companies have us firmly in their grasp. And our well being is not nearly as interesting to either of them as is the depth of our pockets. Change will only come, if we insist on it's coming.

    The road will not be easy. It never is. The more correct the new path is, the more resistance from the old path there will be.

    I'm just saying. There are some here who know the truth of this. Please continue on your path and continue to share what you learn.

    I will always love you for your strength.

    Claudia

    Macrophage activation
    Dear Optimist

    Thanks for sharing all the info you did--it certainly is exciting and encouraging to know Israel is making advances in cancer therapy. Are you sure your relatives wouldn't mind having you as a house guest? I wouldn't hestiate to take advantage of such a therapy if I had your opportunity.

    I think you are talking about the "macrophage" which is the white blood cell known as the "big eater"--there isn't a white blood cell that is called a "microphage." Anyway, I just wanted to clear this up in case anyone was doing a Google search for microphages--Google is just gonna redirect the search to macrophages anyway.

    Macrophages are activated by something called "beta glucan" which is found in many of the mushrooms that have immunostimulatory properties. Beta glucan is also sold over-the-counter. It is best taken on an empty stomach. I really don't know what the therapeutic dose is. Wikipedia has a LOT to say about beta glucans: http://en.wikipedia.org/wiki/Beta_glucans

    Claudia: There is a current movement in the US to try to get ALL OTC herbs and supplements on prescripton. Believe it or not Big Pharma is just as much against this as the AARP is! Pharmaceutical companies now own many of the supplement companies and want to capture as much of the market as they can. Ha! ha! ha!

    Finally, the immune system is something that needs to be stimulated with care. There is a condition called "tumor lysis syndrome" where so much tumor is killed off at one time, the person dies from the toxic waste products of the tumors. Sometimes this happens when people are doing integrative therapies. I am all for doing immunotherapies--just got to be careful not to overstimulate the immune system where there is a large tumor burden involved.
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #4
    Just cut this from my update
    Just cut this from my update post.
    Also planning to get live tissue analysis done they give Mt. Sinai proper transport stuff we fed ex it t Johns Hopkins with high tech company behind it from Israel, experimental out of the box, but analyzes and grows live tumor cells to make educated guesses on what Chemo wont work and what might.
    Any experience?
    Sara
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #5
    carolenk said:

    Macrophage activation
    Dear Optimist

    Thanks for sharing all the info you did--it certainly is exciting and encouraging to know Israel is making advances in cancer therapy. Are you sure your relatives wouldn't mind having you as a house guest? I wouldn't hestiate to take advantage of such a therapy if I had your opportunity.

    I think you are talking about the "macrophage" which is the white blood cell known as the "big eater"--there isn't a white blood cell that is called a "microphage." Anyway, I just wanted to clear this up in case anyone was doing a Google search for microphages--Google is just gonna redirect the search to macrophages anyway.

    Macrophages are activated by something called "beta glucan" which is found in many of the mushrooms that have immunostimulatory properties. Beta glucan is also sold over-the-counter. It is best taken on an empty stomach. I really don't know what the therapeutic dose is. Wikipedia has a LOT to say about beta glucans: http://en.wikipedia.org/wiki/Beta_glucans

    Claudia: There is a current movement in the US to try to get ALL OTC herbs and supplements on prescripton. Believe it or not Big Pharma is just as much against this as the AARP is! Pharmaceutical companies now own many of the supplement companies and want to capture as much of the market as they can. Ha! ha! ha!

    Finally, the immune system is something that needs to be stimulated with care. There is a condition called "tumor lysis syndrome" where so much tumor is killed off at one time, the person dies from the toxic waste products of the tumors. Sometimes this happens when people are doing integrative therapies. I am all for doing immunotherapies--just got to be careful not to overstimulate the immune system where there is a large tumor burden involved.

    thanks for correcting the typo
    carolenk,

    thanks for correcting the typo.

    I am sure my in laws (especially my sister in law) will adopt me at a heart bit to nurse me back to health. I still wouldn't want to take a year off in a foreign country: a lot going on here in USA for me, personally and professionally. So, going to a foreign country for treatment has to be a last resort, and I hope it won't come to that.

    anyway, I think the next breakthrough in cancer management will come from the immunotherapy side. I believe the research community is reaching an asymptote level when it comes to discovery of drugs that are better at killing cancer cells. The breakthrough has to come from the other big part of the whole equation: the body's own ability to fight back. In fact, this is what keeps a vast majority of people from developing cancer: cancer cells are created all the time. healthy patients have the body's own mechanism that keep those under control.

    by the way, thanks for mentioning TLS. Interestingly enough, my doctor at memorial sloan kettering mentioned a similar phenomenon as a potential explanation for why on Doxil the CA125 may spike initially even among women who are responding very well to the treatment. He said something to the effect that rapidly destroyed cancer cells may be releasing a large amount of protein with cancer antigen, hence a spike in CA125. But then again, you have to wonder what about Doxil that triggers this response, while other powerful chemo drugs don't! The whole bio science is a big fat piece of a puzzle.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #6
    Sara Zipora said:

    Just cut this from my update
    Just cut this from my update post.
    Also planning to get live tissue analysis done they give Mt. Sinai proper transport stuff we fed ex it t Johns Hopkins with high tech company behind it from Israel, experimental out of the box, but analyzes and grows live tumor cells to make educated guesses on what Chemo wont work and what might.
    Any experience?
    Sara

    Are you sure the FDA has anything to do with FUNDING research?
    My husband is an investor and often buys into biotech companies that are doing exciting cuttingedge research, so maybe my view of who funds research is skewed by that. But I really do think that venture capitalists and private individuals as a collective (through the stock market mechanism) fund a LOT of the medical research as an investment strategy.

    And as far as doctor's losing their license for prescribing non-FDA approved drugs, they would have to be pretty far out there in what they were prescribing. The 'Respite' supplement I drink twice daily was prescribed by my nutritionist, a doctor, & in no way is that considered a 'drug', and yet it appears on my list of prescriptions. And that radioembolism I had is certainly not FDA-approved for any gynecologic cancers, and yet my insurance and my oncology team made it possible for me to get it under the 'compassionate care' argument. I realize you are talking about unregulated supplements and not medications officially named 'drugs.' But for the sake of fairness, I just don't see a big conspiracy between pharma, doctors, and the FDA to keep people from any kind of promising treatment. I wouldn't be fighting so hard to stay on this beautiful earth if I thought that this world was that corrupt. Shoot me now, ya know??

    I don't want to turn this into a big argument (I'm too sick for that right now & HATE arguing anyway.) I am just suggesting another side to this issue. No one can argue that cancer is not a big $$ business, but I will argue that the medical community really is trying to lengthen lives and alleviate pain, not just make a buck.
  • california_artist
    california_artist Member Posts: 816 Member
    #7
    carolenk said:

    Macrophage activation
    Dear Optimist

    Thanks for sharing all the info you did--it certainly is exciting and encouraging to know Israel is making advances in cancer therapy. Are you sure your relatives wouldn't mind having you as a house guest? I wouldn't hestiate to take advantage of such a therapy if I had your opportunity.

    I think you are talking about the "macrophage" which is the white blood cell known as the "big eater"--there isn't a white blood cell that is called a "microphage." Anyway, I just wanted to clear this up in case anyone was doing a Google search for microphages--Google is just gonna redirect the search to macrophages anyway.

    Macrophages are activated by something called "beta glucan" which is found in many of the mushrooms that have immunostimulatory properties. Beta glucan is also sold over-the-counter. It is best taken on an empty stomach. I really don't know what the therapeutic dose is. Wikipedia has a LOT to say about beta glucans: http://en.wikipedia.org/wiki/Beta_glucans

    Claudia: There is a current movement in the US to try to get ALL OTC herbs and supplements on prescripton. Believe it or not Big Pharma is just as much against this as the AARP is! Pharmaceutical companies now own many of the supplement companies and want to capture as much of the market as they can. Ha! ha! ha!

    Finally, the immune system is something that needs to be stimulated with care. There is a condition called "tumor lysis syndrome" where so much tumor is killed off at one time, the person dies from the toxic waste products of the tumors. Sometimes this happens when people are doing integrative therapies. I am all for doing immunotherapies--just got to be careful not to overstimulate the immune system where there is a large tumor burden involved.

    carolen
    Morning, I hope they don't achieve that goal. I was hoping for the law to change making it read that doctors can prescribe anything they know might be of benefit, instead of only FDA approved drugs. They currently, as I'm sure you know, can't even prescribe drugs that are used routinely in other countries. And what is so odd about this whole situation is that the FDA, very, very often approves drugs that turn out to be wholly harmful. Then they are taken off the market, recalled, pharms still make money, but now lawyers can make money on lawsuits. Sorry.

    About how cancer cells die. When they are killed instead of die through apoptosis, it does have a much different effect on the body, which can be overwhelmed with the overburden of killed as opposed to suicidal deaths. Isn't that why improving immune function works, no wait that wouldn't be right as the immune system would send out things to kill the cancer outright, what one would be aiming for would be to convince the cancer cells that they want to kill themselves. Right.

    By the way, how are you doing these days?
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #8
    Sara Zipora said:

    Just cut this from my update
    Just cut this from my update post.
    Also planning to get live tissue analysis done they give Mt. Sinai proper transport stuff we fed ex it t Johns Hopkins with high tech company behind it from Israel, experimental out of the box, but analyzes and grows live tumor cells to make educated guesses on what Chemo wont work and what might.
    Any experience?
    Sara

    Hopkins
    I had my surgery and treatment at Hopkins and my tissue assay was sent to a lab near Pittsburgh. That is all I know about it except that the lab was supposedly doing cutting edge assay work.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #9
    JoAnnDK said:

    Hopkins
    I had my surgery and treatment at Hopkins and my tissue assay was sent to a lab near Pittsburgh. That is all I know about it except that the lab was supposedly doing cutting edge assay work.

    Codex Alimentarius
    If you think Big Pharma is trying to restrict supplements and have control of them, you need to read about Codex Alimentarius. http://en.wikipedia.org/wiki/Codex_Alimentarius

    I read about it a long time ago but today went to SNOPES:

    http://www.snopes.com/politics/medical/vitamins.asp

    These so-called "threats" to the supplement industry have been around for many years, and none of the threats are valid, as you will see if you go to these two links and read them thoroughly. If you do not want to do a thorough reading, I would refer you to the last three paragraphs of the Snopes article

    Of course there are always people out there who try to use false scare tactics and stir up the waters.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #10
    lindaprocopio said:

    Are you sure the FDA has anything to do with FUNDING research?
    My husband is an investor and often buys into biotech companies that are doing exciting cuttingedge research, so maybe my view of who funds research is skewed by that. But I really do think that venture capitalists and private individuals as a collective (through the stock market mechanism) fund a LOT of the medical research as an investment strategy.

    And as far as doctor's losing their license for prescribing non-FDA approved drugs, they would have to be pretty far out there in what they were prescribing. The 'Respite' supplement I drink twice daily was prescribed by my nutritionist, a doctor, & in no way is that considered a 'drug', and yet it appears on my list of prescriptions. And that radioembolism I had is certainly not FDA-approved for any gynecologic cancers, and yet my insurance and my oncology team made it possible for me to get it under the 'compassionate care' argument. I realize you are talking about unregulated supplements and not medications officially named 'drugs.' But for the sake of fairness, I just don't see a big conspiracy between pharma, doctors, and the FDA to keep people from any kind of promising treatment. I wouldn't be fighting so hard to stay on this beautiful earth if I thought that this world was that corrupt. Shoot me now, ya know??

    I don't want to turn this into a big argument (I'm too sick for that right now & HATE arguing anyway.) I am just suggesting another side to this issue. No one can argue that cancer is not a big $$ business, but I will argue that the medical community really is trying to lengthen lives and alleviate pain, not just make a buck.

    funding/conspiracy
    If you go to the FDA website (or even read about the agency on Wikipedia), you will see its list of responsibilities. Funding drug research is not one of them. I asked about this of a friend of mine who works there and she laughed and asked if I was serious.

    Of course, there will always be conspiracy theorists who see the worst in everything. They have been around forever.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #11
    JoAnnDK said:

    Codex Alimentarius
    If you think Big Pharma is trying to restrict supplements and have control of them, you need to read about Codex Alimentarius. http://en.wikipedia.org/wiki/Codex_Alimentarius

    I read about it a long time ago but today went to SNOPES:

    http://www.snopes.com/politics/medical/vitamins.asp

    These so-called "threats" to the supplement industry have been around for many years, and none of the threats are valid, as you will see if you go to these two links and read them thoroughly. If you do not want to do a thorough reading, I would refer you to the last three paragraphs of the Snopes article

    Of course there are always people out there who try to use false scare tactics and stir up the waters.

    Sara - re: assay
    I'm glad that you are getting this done on fresh tissue. My docs did this when I had initial surgery 3 years ago. I'm surprised it is not a routine procedure.

    My best to you. Mary Ann

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