Julie Fruit Flies And Julie Mice

In addition to using this blog as a means to keep family and friend updated on my medical status, as well as for my emotional outlet and philosophical musings, I feel a strong sense of obligation to share medical and scientific information here, to meaningfully assist others who are living with colorectal and other cancers, as well as those who do not have cancer (but who may be current or future caregivers or future cancer sufferers).  And I’m not talking about simple things like, get a colonoscopy if you’re 50 or earlier if you have symptoms or family history.  My goal is to provide you with information that is not common knowledge, that represents the cutting edge of science, as I understand that information and as it applies to me (and possibly you).  The truth is that the standard of care for those with metastatic colorectal cancer generally sucks, to put it eloquently, and that I will die if I’m treated with the standard of care.  I’ve yet to meet anyone who has been cured (meaning no evidence of disease for five years or more post-treatment) of colorectal cancer that has metastasized to the lungs (which is where my mets are currently, as far as I know).  I’ve met a number of people who have been cured of colorectal cancer that has metastasized to the liver, but not the lungs.  For whatever they are worth, my impressions of colorectal cancer that has metastasized to the peritoneum, small intestines, ovaries, brain and bones is even more depressing.  Of course, science is constantly evolving so what I know to be true today about the prognoses of those with metastatic colorectal cancer may not be true in a year or two or three.  And if I’m to have a chance at long-term survival, I must find a way to be part of that evolving science.  And perhaps, with a little luck and possibly a nudge from the Hand of God, I and my doctors just might make the right choices.  

In addition to exploring immunotherapy trials (none of which I qualify for at the moment because my tumors are too small to meet the definition of measurable disease) and giving some passing consideration to laser surgery in Germany (my oncologist and the NYU lung tumor board believe my mets are too small and therefore would not be visible for that treatment (but I really should send my scans to Germany for evaluation)), I’ve been exploring some options that really have a science fiction-like quality.

I heard about the fruit fly study in February from another colorectal cancer patient, who had in turn heard about it on the CBS News a year ago.  At about the same time, I saw an article in Esquire that profiled a colorectal cancer patient, Stephanie Lee, who participated in the study.  (She died on February 4, without ever having been able to reap the potential benefits of the results of the study.)  Basically, it involves the harvesting of an individual’s cancer tissue, implanting the tissue in fruit flies, breeding thousands of fruit flies and then assaulting those flies with every FDA-approved drug, whether designed for cancer treatment or not, to develop a drug therapy specific to that individual’s cancer.   Aside from immunotherapy, this type of treatment stands at the heart of the hottest trend in cancer treatment – what everyone calls personalized medicine.  Personalized medicine says that indeed everyone’s cancer regardless of its primary origin in the body is unique and that it should be treated thusly; it largely rejects the standard of care that is currently applied to everyone depending on his or her type of cancer.  For example, in lieu of Folfox or Folfiri, the conventional first line treatment for colorectal cancer, a breast cancer drug or a blood pressure medication might work on my tumor more effectively.

The fruit fly study is being conducted at Mount Sinai Hospital, the institution at which I received HIPEC surgery.  I emailed my surgeon, Dr. D.L. and asked him if he could put me in touch with whoever I needed to speak to about the study.  He felt I would be a good candidate and set up an appointment for me with Dr. A, the medical oncologist in charge of the colorectal cancer portion of the study.  Honestly, I left the appointment rather disheartened.  While she agreed with Dr. D.L. in believing that I would be a good candidate given my relative health and strength (because the study requires a period of six to nine months), Dr. A, admitted that the fruit fly study had received too much press prematurely, that indeed the study is still in its infancy.  (Translation:  there’s no good data on whether the results from the study are reliable; in fact, I don’t think there’s any significant data.)  Furthermore, in order to participate, one gram of tumor tissue has to be harvested either surgically or through biopsy – that sounded like a lot to me and clearly is way more than what I have in my body. Dr. A. also informed me that they were currently on hold because the genetics counselor running the study had recently left so they were in the midst of retaining a new one.  So maybe it’s a good thing that they seem to be in a hold pattern, giving my tumors a chance to grow.  So maybe I should not be upset about my rising CEA.  Right…  Other facts of note:  the costs would be covered by the study; the drug therapy, assuming there were one to come out of the study, would be available to participants once they had failed at least two standard of care treatments (which I have).

Around the same time I heard about the fruit fly study, I also heard about a private company, Champion Oncology, that does something similar, but with mice.  My oncologist actually mentioned Champion Oncology to me when I asked him if he had heard of the fruit fly study, as in “You know, there are companies that do the same thing to mice.”  I spoke to a representative of Champion Oncology this afternoon.  Champion takes freshly extracted cancer cells and implants them in one to five immune-suppressed mice (depending on the amount of tissue extracted).  They need a minimum of one-half cubic centimeter of tumor.  It takes 13-15 weeks to determine if the tumor grafts have “taken” and if so, then those tumors are implanted into a second group of mice, on whom the drug assault will take place.  All in all, the process takes about five to six months before a drug therapy, if there is one, is recommended.  Since the company’s inception, they’ve had 900 patients agree to implantation and a general “take rate” of 65%, although 75% for colorectal cancer.  It costs $2100 to do implantation and then a minimum of $5500 for the testing.  The pricing for the testing is based on the number of tests the patient wants, with each additional test being incrementally cheaper.  I’ve copied the follow-up email below with more specific information on pricing and data.  They have a 90% success rate in the positive and a 94% success rate in the negative, meaning the data seems pretty accurate as to whether a drug will or will not work.  I don’t know how I can verify the veracity of this data.  But obviously, the information with respect to mice is much more extensive than the information I’ve received regarding the fruit flies.  The fruit fly advocates believe fruit flies offer the advantage of volume, meaning one can produce a lot more Julie flies than Julie mice and therefore all FDA-approved drugs can be tried on the flies.  The Julie mice would require me coming out of pocket for each test and my oncologist and their scientists would collaborate on which drugs and drug combinations to try on the mice.  So the mice study is an expensive proposition.  However, and this is a big however, one might presume that results in the mice would be more accurate and promising than the results in the fruit flies, as we humans are more like mice in our mammalian nature than we are like flies.  The Champion Oncology representative felt optimistic about being able to convince the insurance companies to pay for whatever drug therapy resulted from the study.

So, I’m curious to hear what others think of this, especially those in the medical profession?  It would be ideal wouldn’t it if I had enough tumor tissue to participate in both studies?  There could be Julie fruit flies and Julie mice flying and running around.  Who knows if I will stay healthy enough to do any of this.  I’m going to discuss all of this with my oncologist next Tuesday when I go in for my next Avastin infusion.  Has anyone had experience with Champion Oncology or a similar company?

Here’s the follow-up email from Champion Oncology:

*It is crucial that your medical oncologist be accepting of our technology and willing to work with our scientific team. I believe that our medical science liaison has touched base with Dr. Chachoua and he is aware of what we do here at Champions.

*Our technology requires that fresh tissue be implanted into immunocompromised mice. We prefer metastatic tissue over primary tissue, but we will accept either. For a biopsy we request 4 core biopsies via an 18-gauge needle and for surgical cases we request a half to a full cubic centimeter of tissue. The more tissue the better.

*We ideally prefer to implant tumors that have not been exposed to chemotherapy in recent weeks. We recognize this is not possible in every patient’s case, but it is important for the patient to understand that obtaining a sample from a tumor that has recently been treated can reduce the chance of a successful engraftment (assuming the treatment is positively affecting the tumor).

*Surgery or biopsy should ideally be scheduled for first thing in the morning to allow for the majority of tumor transportation to occur during business hours.

*Approximately  65% of the tumors we implant grow successfully.

*It takes, on average, approximately 13- 15 weeks for the initially-implanted tumors to grow to full size. Once the first generation tumors grow to full size, they are harvested, divided into smaller pieces, and re-implanted into a second generation of mice. Chemosensitivity testing generally begins about 40 days after the process of harvesting and re-implantation occurs. Once testing begins, results are generally available within 4 weeks. In other words, the patient can expect the process to take approximately 5-6 months.

The initial implantation fee is $2,100. Plus $ 200 for the shipping. Once the tumors grow successfully and you confirm interest in proceeding to drug testing, the next payment would be dependent upon the number of drug tests performed against your tumors. On average patients test 5-7 drugs/drug combinations against their tumors, but we can work with smaller or larger studies. The pricing structure is as follows:

Test(s) Total Cost ($)
1 5,500
2 7,500
3 10,500
4 13,200
5 15,800
6 18,300

Note: Additional tests can be performed for $2,500 each

Your medical oncologist will have direct input as to the drugs that are tested against your tumors. My chief medical officer and scientific team would be in direct communication with your medical oncologist throughout testing and a final report, once generated, would be sent to the doctor as well as the patient.

Now, more specific to CRC: We have had approx. 86 patients that have done at least one implantation. About 68 of those patients tumors grew. About 29 of those patients did a study and 39 did not do a study. About 26 of the patients that did studies have received a final report and 3 are still ongoing. About half of those patients who did a study went on the drug determined by the mouse models.

Also something worth mentioning that while across the board our take rate is 65 % in CRC historically our take rate has been upwards of 75 %.

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2 Comments (+add yours?)

  1. Julia
    Mar 13, 2015 @ 22:54:04

    Hi Julie- A company called RGCC, located in Greece, isolates malignant cells from the blood ( no need to send tumor samples) and develops cell cultures to which they add the drugs to be tested.They have samples of the tests that they do on their website, this one is called Oncostat:
    http://www.rgcc-genlab.com/?tests

    Reply

  2. Kris
    Mar 15, 2015 @ 09:12:37

    I agree with you that it seems like tumors grown in mice would respond more like those in a human body, but I also know science doesn’t always work the way we laypeople assume. Since the tumor cells are your tumor cells, maybe it doesn’t matter what the host is? But most chemo isn’t delivered directly to the tumor, and a mouse’s circulatory system and digestive system are more like yours. Even with leukemia (the cancer I am most familiar with from work), where the cancer cells are in the blood, some drugs work better in given orally, some intravenously, and some as an injection, so maybe the way a fruit fly processes the drug would be different enough from what it would do in your body to throw off results.

    It seems to me, though, that since these studies are being done outside your body, you also have the unusual situation where you can try two studies at the same time, without confounding the results. If you have the money and feel like the mouse study has promise, doing both seems like it increases your chances if finding a treatment that will work. It’s too bad the mouse one sounds like it is a little faster, because it could be cool to have the fruit fly narrown down the treatment options and then try the one or two most promising ones on the mice.

    Reply

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