Yesterday a myeloma list member reported his test results after five cycles of cyclopamine. He authorized me to post about it. If you have no clue as to what I am writing about, see my August 2 and 3 2007 posts about cyclopamine, or my permanent page (see my Pages on the right, and look under "Other anti-myeloma/cancer supplements").
Here are some details posted by the cyclopamine-taking list member (from now on, I will refer to him as CT, or cyclopamine-taker) took a water-soluble form of cyclopamine for a year and a half. More specifically, he took 200 mg of cyclopamine a day for 14-15 days at a time, every 2-4 months. His m-spike went from 1.0 (achieved after two stem cell transplants two and a half years ago) to 0.2, then to 0.1, and he is convinced that these decreases, the first since his transplants, were due to his cyclopamine intake. Coincidental? Possibly. He reported, by the way, no side effects. Indeed, he feels great.
Okay, but we should not get TOO excited about this substance. The main reason, at least as far as I am concerned, is that it costs an arm and a leg. I had the brilliant idea of seeing if I could order some and ask my parents bring it over to me when they fly to Italy for their regular summer visit, but when I saw what it cost, i.e. thousands of dollars, my eyes almost popped out of my head. No way I could afford it. CT has a cheaper source than what I found online, but it’s still way beyond my budget.
Another list member pointed out that he would be anxious about potential side effects that might not manifest themselves immediately, but perhaps 20 years down the road. But CT (good sense of humour!) said that he would be happy to survive 20 years with myeloma! Indeed. He added that he is well aware that there are possible risks involved in taking a substance that hasn’t been approved by the FDA, but after all, we are dealing with myeloma, not an ingrown toenail (my analogy, actually). So true.
CT reminded us that Dr. Matsui reported in April 2006 at the American Association for Cancer Research (AARC) meeting that cyclopamine caused differentiation of myeloma stem cells. In other words, the myeloma stem cells were eliminated because they did not produce any more cancer stem cells. The stem cells turned into mature plasma cells that eventually died out. Normal cells were not affected, he reported.
For an interesting Science Daily article (2002) on cyclopamine, see: http://tinyurl.com/2zcwut
In PubMed there are 260 studies on cyclopamine. But there is not one clinical trial. Typical.
As usual, I hope this situation will change soon. If it does, I might be first in line!
Update on the update: with this post, I wanted to report on an interesting case, perhaps (I hope!) a crucial one in the battle against myeloma stem cells. I would like to underline, though, that I am not encouraging folks to take cyclopamine. Even though we aren’t pregnant sheep (if you are puzzled about that statement, read my page on cyclopamine: all will be clear 
), we still don’t know if there might be harmful side effects (etc.). CT did report that he had none, which is extremely important. In sum, I think this substance should definitely be put on our watch-and-see list. Yes, indeedie!
Isn’t that the way of the capitalist world? Possible cures too expensive for the common man to afford! It is neither right nor fair! Winnah
Firstly, I also saw the posts on the listserve and would like to applaud CT for his courage and pioneering spirit. But as he says, with MM, the upside potential is much greater than the downside.
Secondly, isn’t cyclopamine cheaper than velcade? Our governments (not the pharmaceutical companies) should be rushing this stuff into clinical trials. Think of the savings in all the other meds and SCTs. If it works it will save the healthcare services an enormous amount.
From”Chemotherapy heals cancer and the world is flat” by
L. Hirneise(www.nexus-book.com):”non conventional cancer therapies are often dismissed because they are “not recognized
scientifically….Most doctors will then say that there were no double
blind studies. What they do not tell you is that there is no
possibility whatsoever of performing such a study. First you must
know that it is very expensive to get approval for a new medication
and only large pharmaceutical companies can afford the approval
process. Another problem is that many good therapies cannot
be patented, consequently are of no interest to a large corporation.
In addition, a medication can only be approved if it has been
tested on people…..a so called ethics commission decides
on which human experiments can be performed . And now guess
who sits on these panels?……professors who are known
to only represent one direction of medicine……
Carla, what you say is all true. I have worked for a large pharmaceutical company so I know the conflicts of interest that exist. This is one of the main reasons that our health services are overburdened and many, if not most, drugs do not provide a cure. There is more profit in keeping people alive but drug dependant.
Therefore, the real breakthroughs in medicine are going to come from maverick researchers and brave patients like CT. I say good luck to them.
How did CT get water soluble Cyclopamine?
Paul and Carla, spot on. I agree with everything you wrote.
So, pressing onward. What can we do about this situation? The idea I came up with early on Saturday morning (I’m still a bit blurry) is that we can do what CT does, try promising substances, and then encourage our doctors to write case studies based on our results. If one, two, three, a dozen etc. case studies start getting published, perhaps something will be done, eventually…(I know, but I can’t help it, I am a hopeless optimist).
This deserves more thought.
I for one will ask my haematologist about cyclopamine and see if she can get some through her lab. Can’t hurt to ask!
🙂 Margaret
P.S. William, all I know is that CT got his cyclopamine, a very pure form by the way, from a chemist he knows.
My son has brain cancer and has failed three chemo protocols and is really unable to tolerate anymore chemo. I’ve read about the cyclopamine/ lovastin combination working in mice with the exact kind of cancer he has. Do you think you can find out how much of the lovastin CT is taking and when he takes it in relation to the cyclopamine (with it, before, after)? Thanks. And thanks for all the info on curcumin etc.
Hi Zoe,
I double-checked CT’s posts. He never took lovastin. For the first 1.5 years after his tanden transplants (2.5 years ago), he took Thalidomide, Dexamethasone, Revlimid and Aredia. His m-spike didn’t decrease one bit. He never finished the last two rounds of regular chemotherapy, presumably because he was doing so well on cyclopamine.
He stopped taking Revlimid 3.5 weeks before having these most recent tests done.
That’s the information I have.
I might be able to put you in touch directly with CT. I will send him your comment, as a first step.
Take care, and good luck!
Margaret
This is great news, but it does seem to be a puzzle, since cyclopamine is totally water insoluble. It would be very interesting to know the proper chemical name of what CT took.
George
Thanks, Margaret. That would be great.
Zoe
I have Stage IV metastasized to bone prostate cancer. Through my research I happened along your site. I realize the site’s focus is on skin cancer. Thanks to Zoe for encouraging me to post.
If I were able to find a way to purchase Cyclopamine, how would I go about determining dosage levels and intervals? I am in the process of providing my Oncologist with the research I have uncovered. I also have my PCP looking into two articles that relate to advanced Stage IV & Cyclopamine studies we found on a medical database.
Any assistance would be most appreciated.
Scott
Hi Scott,
This compound could be of interest to you. zerumbone is found in a certain type of ginger plant. zerumbone actually targets the same pathway as cyclopamine but targets it at a better location.
http://www.ncbi.nlm.nih.gov/pubmed/18357592
Wish you the best of luck.
drew007martin@gmail.com
Logan Natural Products has patent on Cyclopamine-Tartarate( Water soulible form of Cyclopamine ). This compond is under research for Myeloma .
If I can put my hands on the money I am going to use this for my son before his next surgery. His medulloblastoma has reaccurred. If anyone has info on source, dosage, etc. I’d appreciate it.
Barbara,
You could try talking to this guy – email in the link
http://northtexas.myeloma.org/MMSTEMCELL.pdf
Paul
Just a note about an off label use of cyclopamine.
Last year I used cyclopamine tartrate off label partially because I had read reports on this blog. I had a 53% decrease in the tumor marker in 6 weeks from 287 to 140. My oncologist knew about my off label use of the cyclopamine tartrate, and was astonished at the results. This was all I was doing that was new in the face of rising marker. I am still using it, as it kills pancreatic cancer stem cells. I am doing chemo now, tough, as well.
I had four years of living with stage IV of this dreadful disease, and am in otherwise great shape. Pancreatic cancer kills nearly all who have it, so my situation is unusual. My usage has varied: 7 mg for a week each month, 20 mg for a week every two months.
but where is this product available from.Can it be purchased by an individual