This is a portion of a post from Nick on the mmasupport list on his use of cyclopamine- I think Nick's attitude is indicative of several things-
1) Nick is clearly frustrated with the current state of conventional therapy-
2) All conventional therapies have side effects- in many cases, long term negative side effects-
3) The FDA's ability to manage mm therapies is limited at best-Â
Since Nick is frustrated with the state of conventional mm care, he is willing to take this substantial risk on a therapy called cyclopamine. The several studies by Ralph Moss that I am highlighting on the b-m.org forum/listserv outline through legitamate research that antioxidant support duriing chemo and radiation therapy may improve
-the effectiveness of the conventional therapy and
-the body's ability to handle the toxic side effects of the treatment (reduced side effects)
In this age of studies showing the effectiveness of lower doses of thal, dex, rev, etc why don't oncologists promote antioxidant support during conventional therapy?!
"Finally the comment about we don't know what
Cyclopamine will do to you after 20 years makes me
laugh. 20 year survival with myeloma...I will take
that! But really looking for a cure with Cyclopamine.
 Now I will be a little morbid, if this really works
out for me, you will not be attending my funeral, you
will not be around to make it. My last comment is
that, I am not worried about what the FDA thinks about
Cyclopamine. I am not running a clinical trial here
where I need their approval. I am trying to save my
life, and the FDA has no right to tell me I can't do
what it takes to save my life."
 Nick
Â
Hi everyone!
Just wanted to let everyone know that I requested permission from the cyclopamine-taker to post his story on my blog. He very kindly gave me permission (I didn't use his name, of course, for obvious reasons). If you aren't members of the MM Support list, you can go read the story on my blog.
Have a great day!
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
This is a post from Minnasota Don to the acor list-Â
Message: 1
Date: Wed, 5 Mar 2008 13:05:41 -0600
From: "Minnesota Don" <minnesotadon@gmail.com>
Subject: Re: [MMA] [MM] Dr. Barlogie - Cure Stats       NO CURE!
To: <privet01002@yahoo.com>, <mma@lists.mmsupport.net>
Message-ID: <F417088D602F4416A0F2A4A8F29A55FB@Stirling>
Content-Type: text/plain; format=flowed; charset="iso-8859-1";
   reply-type=original
Nick and list members,
Does anyone know of any research center that is doing Phase 1 trials of
cyclopamine or any other agent targeted at the progenitor cell? I
mentioned cyclopamine to Dr Lacey at Mayo on Monday, and she asked me if
Johns Hopkins was doing that. I couldn't give her an answer.
In any case, she said that she would discuss it with a colleague who is,
I think, the doctor at Mayo most interested in the progenitor cell
hypothesis and most likely to run with the ball. She further described
a hypothesis similar to the Johns Hopkins findings, but it wasn't
exactly the same; I can't bring it to mind right now. It did sound like
cyclopamine would be effective in either case, though, because of its
ability to cause the progenitor cells to mature and stop creating
myeloma cells.
BTW, Mayo no longer dismisses the notion of a myeloma progenitor cell.
According to Dr Lacey, they have an open mind about that issue. And of
course, those doctors are likely to have differences of opinion among
themselves.
Don
Myeloma: http://myelomahope.blogsp...
Running:Â http://minnesotadon.blogs...
I have contacted the researcher in charge of cyclopamine at John Hopkins. It is still in a preclinical matrix. This is the second precilincal study which he has done. The first one was a few years ago. He feels that phase I trials might start at the end of the summer of early fall. If I hear more I will keep you updated.
Mary Jo
MJ,
Thanks for sharing this information. I think I speak for other members when I say how much I appreciate your staying informed about this important and hopeful treatment.
Hope you're doing well.
Cathy
Nick: "My last comment is that, I am not worried about what the FDA thinks about yclopamine. I am not running a clinical trial here here I need their approval. I am trying to save my life, and the FDA has no right to tell me I can't dothat it takes to save my life."
That is the attitude that will save your life. Dr. Bernie Segal calls you and your ilk the "exceptional" cancer patients who take control of their healing and own the outcome and in line with that will not be dictated to by some faceless regulatory agency who really has no stake in wheather you live or die but has a stake in following it's own priorities and proceedures. What you have come to understand is that your life and health depends on you and your decisions and that what ever treatments or modalities that are out there you will choose them not based upon weather they are currently the approved (read moneymakers) for the pharma industry but based on whether they work for you in your quest for restored health.
Thank you...keep it going... you are on your way...
Markcg
He's absolutely right- I was diagnosed with MGUS Feb.06 -m-spike 0.03- went up to 0.07 and then as I took control took all your advice and listened to my body -worked my way to 5 grams of curcumin among other things. Reduced stress, soaked in 104 degree water twice a day. Last test before Dr appointment 0.02 and the day of appointment I had another test- just got it back -"NO monoclonal protein detected by the current electrophoresis study". So I still have neuropathy but doubt it will kill me. WOW! Thank you all - so I won't be contributing that much but will continue on my regimine and am a believer that DR's are just practicing and I am the authority on my Body- I've been studying it for 58 years!!! Trust Yourself!!!!Love to you all- couldn't have done this withhout you!!!
That's great news, Portland Rose. I hope your labs continue to show zero monoclonal protein.
CathyÂ
Hey, I already answered you privately, but thought that this was SUCH a SUPER DUPER bit of news that the entire list should celebrate. Ok, everyone, let's raise our glasses full of resveratrol to portlandrose and her success. Yahooooo! Cheers, everyone! :-)
You did it, kiddo! And, by the way, as I told you in the e-mail I just sent to you, the only person you have to thank is: YOURSELF! Oh, I am sooooooo happy! You go, girl!Â
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
Portlandrose-
Congratuations! I agree with Margaret. You did it yourself. Your post talks-the-talk and are you are now walking-the-walk! Have you undergone any forms of conventional therapies at all since 2/06? Just lifestyle changes and curcumin brought your m-spike down from .07 to .02 to no monoclonal protein? Â
David Â
I did it all with supplements, lifestyle change, hydrotherapy, and diet change- all of which my DR told me would not effect my MGUS. He also told me my m-spike would never go to 0. Now I'm sure he will suggest the test is wrong but it's the 2nd test in 2 weeks and the other was 0.02 which was less than it had ever been. So in 4 months I will test again and continue on my present regimine. I did have a shingles vaccine shot afterr which I noticed my flu like symptoms went away and I had more energy. but gradually I have become anemic so energy will be my issue next.
 My DR told me there was nothing to do for MGUS except wait and monitor till it turned to MM. He still looks aat me like an alien and I still have neuropathy and joint pain.
Having you all as aa support system has been unbelievably helpful- Thanks again-
Portandrose-
Your statement that "I did it all with supplements, lifestyle change, hydrotherapy, and diet change- all of which my DR told me would not effect my MGUS. He also told me my m-spike would never go to 0" highlights an important point with an mgus/smm. Conventional wisdom is that nothing effects mgus or smm. Portlandrose 's experience is otherwise.Â
The diagnosis SDI set to be emailed next month is below (some of you have requested it others have not so I am posting it to this list). I have linked a study that indicates that each diagnosis, mgus and smm show an average time to myeloma diagnosis. Further, the study shows that the longer you have smm/mgus, the less the chances of a myeloma dx.
 "Since 8 of the 19 total Curcumin Patient Study submissions are either MGUS or SMM
> these two myeloma diagnosis have taken on greater importance to the
> beating-myeloma.org efforts.
>
>
> The article linked below talks about the possibility of each diagnosis
> progressing to multiple myeloma.
>
> I would like to add two thoughts-
>
> 1) it is likely that curcuin supplementation reduces the likelihood of
> either progressing to full-blown myeloma.
>
> 2) the study below indicates that the longer one has SMM, the less
> likely
> he/she is to develop multiple myeloma. If antioxidant
> supplementation like
> curcumin reduces the likelihood of progressing to mm and the longer
> one has
> SMM, the less the chance of progressing to mm, are there SMMers out there who will never progress to multiple myeloma?
>
>
> http://www.medpagetoday.c...
>
>
> "Smoldering multiple myeloma, which accounts for about 8% of the
> malignancy,
> resembles monoclonal gammopathy of undetermined significance (MGUS),
> but
> MGUS is far less likely to progress to active disease or amyloidosis
> at 20
> years, the investigators noted. Smoldering multiple myeloma has a 78%
> probability of progression, versus 21% for MGUS.
>
> "Our study shows that the overall risk of progression in smoldering
> multiple
> myeloma is greatly influenced by the time elapsed since diagnosis, in
> contrast to the risk of progression in MGUS, which remains constant
> over
> time," they wrote."
>
Could you out line in detail everything your doing ? Your supplement regime (supplement, amount, brand timing for taking)diet, timing of 104 hot baths, etc. It is really worth understanding more about what is happening...your experience in my book is far more impotant than some study because of the your process (taking charge) and the results (guess what my MGUS has droped to 0 even though your DR. said it would not ).
Next question: Where is the neuropothy and joint pain, how often does it occur and is there anything that you notice that triggers it ?
Keep going... you are on the road to restored health.
I look for war to your reply.
Markcg
Margaret kindly posted my regimine on her blog a few days ago so here it is http://margaret.healthblogs.org/2008/02/25/fabulous-news/
My neuropathy is in my small nerves so temperature and some feelings of pressure are gone and joint pain is in differing amounts daily mostly low back and sciatica which interestingly changes from one leg to another and some times both legs. I broke my ankle in 2005 and didn't go to the DR for 2 days when it swelled to cantelope size, I drove in and walked on it during this time with little pain. I was a shipyard electrician so the heavy physical labor wore down my spine and my chiropractor says I have the spine of an 80 year old woman (I'm 58). When I got my first bone marrow biopsy the nurse commented on how hard my hip bones were and there are no lesions but nerves are and have been pinched since 1980 it's just getting worse. My knees are bad, I used to crawl around on steel ships without knee pads- so I did this part to myself and I am learning to live with this -the neuropathy is probably a blessing or I would be in more pain.
I do a 104 degree soak every morning and every night. Your body heals by giving you a fever, I think of this as assisting my immune system to heal itself. I have seen studies that discuss heat as something that effects cancer cells- I don't have the studies but I found them with Google.
It has been quite a learning experience- I have given up multi-tasking or keeping score on anything. And I try to laugh often. I am now present more often than when I lived in the past and future because I don't want to miss anything- I think I must have missed a lot in my 58 years and I'm done with that. I listen to my body and it teaches me every day.
That's great news and so inspiring for the rest of us - thanks for sharing your experience! Doctors are not always right, and we are each the best judges of our own bodies. Keep up the great work. Lisa
Linda M - Houston
I am so happy for you! Congratulations on your courage and perseverance. What an inspiration you are. Thanks for sharing your experience.Â
Hi everyone, just wanted to mention that PRose sent me the details of what she did and does, and I posted everything on my blog a couple of days ago. Supplements, etc.
Take care!
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
PRose- your regime is impressive. You mention articles found on google relating to the benefits of your "soak." You mention studies discussing heat effecting cancer cells. Do you remember the words that you used to search? I would like to see if this process of giving yourself a fever in a tub is similar to my daily sauna? David
"I do a 104 degree soak every morning and every night. Your body heals by giving you a fever, I think of this as assisting my immune system to heal itself. I have seen studies that discuss heat as something that effects cancer cells- I don't have the studies but I found them with Google."
Hi All,
I have done some research on the Hedgehog pathway. (the pathway that cyclopamine targerts). This paper just got published
http://www.ncbi.nlm.nih.g...
(Naturally Occurring Small-Molecule Inhibitors of Hedgehog/GLI-Mediated Transcription.)
They found that zerumbone (comes from a certain type of ginger), is a natural inhibitor of the pathway and actually targets at a better target compared to cyclopamine
Hi everyone!
Yesterday I wrote a blog post about zerumbone, which, as hedgehog info wrote, inhibits the hedgehog signalling pathway, which is vital for the happiness of cancer stem cells, including myeloma ones (for more info, see my blog pages on Myeloma Stem cells or Cyclopamine).
Yesterday a friend sent me the full study, which is VERY technical. It took me most of the day (sweating buckets of aggravation) to figure out enough to write a preliminary summary for my blog. You can read my sort-of-summary on my blog (see link below)
, or drop me a note, and I will send you the full study.BOTH substances inhibit the hedgehog signalling pathway: cyclopamine works on an earlier stage (SMO, or Smoothened), whereas zerumbone acts on the final stage (GLI1). This is excellent news.
Of course, now I have discovered about a million online studies on zerumbone and its many anti-cancer effects. How could I have missed this extract? How many more have I missed? It's mind-boggling. In a good sense, though.
The thing about zerumbone is that it just might be easier and cheaper to acquire than cyclopamine. Not sure about that, yet. Hedgehog info, can you tell us more?
I see a lot of hedgehog research in my immediate future.
Margaret
Florence, Italy. Blog URL: http://margaret.healthblogs.org/ Â
Margaret-
Can you answer Nick's questions? (MMAsupport list questions)
"Two questions. Are there any research reports on
using Zerumbone in mm? Where can you get this herb?
My guess is there is no published research on Z in mm,
and that somewhere we can probably get this herb. If
it is perhaps better and less expensive, than I am all
for it. Nick"
 David
Hi everyone. David, I saw the question and answered Nick privately. We are in touch almost daily, now. If something useful turns up, I will share it with B-M and MM Support. So far, there isn't much, but I have only just begun digging. It seems, though, that there are no specific studies on zerumbone and MM. But I have found a study stating that it is active against leukemic (human) cells. That's a good start.
It's not an herb, but an extract. It would have to be extracted from the wild ginger plant (see my recent zerumbone post for more details) and then purified in a lab. I'm looking into that now. No idea of cost, yet.
Fingers crossed!
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
Thanks Margaret-
All- as you may have noticed, when a member creates a post, he or she may cut and paste a link- the link will appear in the post on the b-m.org website but does not appear in the daily digest. Robert is checking into this bug and we hope to fix it soon. I will keep you all posted. Thanks.
DavidÂ
I read some of this study and Margaret is correct when she states that it is very technical. Even Margaret's blog post on the study is somewhat difficult to understand. I think the information however is important for us to know about and therefore I recommend that we all read Margaret's blog on the subject-
"...At any rate, the researchers found that, like cyclopamine, zerumbone, the substance I am interested in right now, antagonizes Hh. One big difference, though. Cyclopamine, as I mentioned, targets Smo, an earlier stage of Hh, whereas zerumbone (and a few of the other compounds examined in this study) affects the final stage of Hh...
Is it possible that in a few years mmer will be taking a cocktail of cyclopamine and zerumbone the way some take thal/dex today?Â
DavidÂ
Dr. Berenson had recently told me no matter what treatment I used, of course, the myeloma would never go away completely because of the mm stem cell. He told me that he hired a researcher (now about 3 months ago) to direct research to get at this precursor stem cell. They are now looking at some type of bacterium.
 The University of Michigan has a substance now in trial that looks very promising, but you can only have had 3 prior treatments. I do not qualify because of this reason.Â
I found out about cyclopamine incidentally and just have looked into it again. I had seen it on Margaret's blog, but there are so many compounds on Margaret's blog, I have a hard time looking into them all. Also, some things, such as massive doses of curcumin, have not seemed to do anything against my mm, although it has had other benefits.
At any rate, now that I have researched cylopamine further, it looks pretty promising, and yes, there can be some side effects. If anyone knows how and where I can get the water-soluble form, please let me know. (a.maas@cox.net)Â There are some posts on the net from doctors who seem to have used it relatively successfully with mm patients--looking like it may eradicate mm completely.Â
 Same thing for zerumbone, but I have not looked into this much. If you know where I can get the most effective form, please let me know. Thanks.
 I am failing treatments at an increasing rate, so I would definitely invest be willing to try to eradicate my mm completely, even if it is an expensive gamble. Â
Alex Maas
a.maas@cox.netÂ
taker here...this is far superior to old school traditional treatments....I have terrible leg pain as well...this combined with <a rel="follow" href="http://www.totalback.com/">sciatica treatment</a> ...I am a new person...thank you
Dear teetee-
Cyclopamine is a bright spot but a bit of a mystery as it is not much talked about on the lists. I am curious to know more.
I think Don is having success though I haven't read much beside him, good or bad.
When you say it is "far superior to old school traditional treatments" can you tell us more? Conventional treatments did nothing for me other than leave me with side effects. If cyclopamine is better, different, whatever, I would like to know.
What was your original dx? M-spike went from what to what? Have you experienced any side effects? Do you do any other therapies? Any complementary therapies?
David
Hi. I am looking into Cyclopamine for my mom - colon cancer. Can you tell me about your experience, your protocol, and where you get it from?
Thanks so much!
Eugenia-
Until there are more specifics-
http://beating-myeloma.or...
David
I am sure that god will help you get through this. If you are interested in how much antioxidants there are in food then this chart might be for you http://www.antioxidantcha...
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