Copper depletion - Trial or taking the drug outside of trial?

you need to be NED or stage 3. No you cannot be on chemo but targeted therapy. I went for a consult when they were taking new patients. I believe it's closed.

This is very interesting, thank you for posting about it. 

So it may be a viable treatment for any MBC patient?  (but their testing was only on TNBC?)

One other question, with any clinical trial is there always 3 phases then possibly approval for use if all goes well? (So in other words, this treatment still needs a phase III before it is approved?) 

Thank you again.

BestBird, Thank you.  I also should have asked if this drug was given alone or with another treatment?  I read through the article quickly but it wasn't clear to me. 

In addition to a traditional oncologist, I have been under the care of a Naturopath in Oregon and an Integrative MD in California who has been using tetrathiomolybdate for 15 years for stage IV cancer patients. In the experience of the MD I work with, they have not seen a relapse in a stage IV patient after taking tetrathiomolybdate for 3 years. I consider that exceptional. Apparently, the 3 year treatment with tetrathiomolybdate causes microscopic metastatic cells to go dormant.

Here are some details:

Tetrathiomolybdate chelates (removes) copper from your body. Copper is integral to cancer cells for building a blood supply (angiogenesis) to feed it. If you take away the ability of the cancer cell to grow, it basically starves and cannot grow. It goes dormant, hypothetically. No one knows for sure.

You have to be NED to start the treatment. It took me 16 months to get there with Femara, Herceptin, ablation to sternal mets and the primary breast tumor, cleaning up my diet, exercise, herbal supplements, meditation and a few other things.

One needs to be followed by an MD or DO as the ceruloplasmin level, white and red blood counts need to be monitored, and you have to have someone to write a prescription for the tetrathiomolybdate. Most unfortunately, a regular MD or oncologist is not going to do this as they are totally ignorant about this type of treatment. Ceruloplasmin measures how well the tetrathiomolybdate is chelating copper out of your body. A ceruloplasmin measurement of 8-12 for three years is the goal. I had some slight anemia which is not unusual. If the anemia becomes too severe or the white blood count falls too low, the dosage of tetrathiomolybdate is adjusted and the blood counts go back up very quickly. I never experienced any difficulty or adverse effects from taking tetrathiomolybdate.

It is important to avoid eating foods with high copper content such as shellfish, dark chocolate, and organ meats like liver while on the treatment and post treatment. Other than that, it is an easy treatment that holds much promise and hope. It is also important during and post treatment to avoid "inflammation." The inflammation to avoid is that which is caused by eating sugars, starches, non grass-pastured meats and dairy products, undergoing unnecessary surgery. As a matter of point, right after going off tetrathiomolybdate, I had to have an unavoidable surgery on a torn biceps and torn rotator cuff. Sure enough, 3 months later some mediasteinal lymph nodes lit up on PET. I consulted with a Breast Cancer Immunologist and my other MD and Naturopath who recommend waiting 3 months before getting alarmed and thinking the worst. It was her opinion that the lymph nodes were hyperactivated from the inflammation of the shoulder surgery. By June, my PET was clear.

There are a few compounding pharmacies that will provide tetrathiomolybdate with a prescription. It is NOT covered by insurance and costs about $250 per month while on the full dose. Labwork is usually covered by insurance.

The Integrative MD is worked with is no longer in practice. He has retired to conduct research for Breast Cancer. The Naturopath I currently work with is Dr. Mark Bricca in Ashland, Oregon. The pharmacy I used to compound the tetrathiomolbdate (T M for short) is The Prescription Center in Wisconsin. You can find both of them with a Google search. If you need a practitioner in your area to prescribe T M and monitor your treatment, I would call the Prescription Center and ask to speak to Wayne Loveland. He fills prescriptions from all over the US and would know who prescribes it. There are other pharmacies that compound TM and you could ask for a reference from them as well I would hope.

I will check back from time to time to see if anyone has any questions.

With love and best wishes to all of you in your journey,

Sherry

My understanding is that for some reason, TM treatment cannot work with any tumor load. I believe there were some women in the Weil TM study that progressed on TM and the thought was that microscopic mets not large enough to be visible on PET had already started growing before TM treatment was started.

I am not sure if avoiding foods with copper would help. It certainly could not hurt.

trial 3 underway?

• Tetrathiomolybdate (TM), a Copper Reducing Drug: In a study of 29 patients with either stage 3 or stage 4 breast cancer who were NED (No Evidence of Disease) and who took the copper-reducing drug tetrathiomolybdate (TM), the progression-free survival rate has been 85% to date.Additionally, in a very small study of 11 women with TNBC MBC (which is the most difficult MBC to treat), only two of 11 study participants relapsed within 10 months after using the anti-copper drug.According to the researchers, copper is essential to the metastatic process.Copper is a key component of enzymes that help turn on angiogenesis (the formation of new blood vessels, which is essential for tumors to grow) in the tumor microenvironment.Copper also appears to play a role in directing cancer cell migration and invasion.TM is a copper chelation compound (chelation involves the removal of heavy metals) that has been used to treat Wilson's disease, a hereditary copper metabolism disorder. From:
  • http://weill.cornell.edu/news/pr/2013/02/copper-depletion-therapy-keeps-high-risk-triple-negative-breast-cancer-at-bay.html
• Note: In a Phase I study of 18 metastatic patients (but not necessarily mbc – there were several cancer types) on this therapy. "Fourteen patients achieved the target copper deficiency before disease progression or other disease complications. Of these, eight patients either progressed within 30 days of achieving copper deficiency or have had stable disease for <90 days; it is unlikely that most of these tumors experienced an antiangiogenic environment long enough to evaluate clinical response to this type of therapy. In all patients removed from the protocol… much more rapid rates of progression of disease were noted clinically after discontinuation of TM therapy. (So this is a caution regarding potential rebounding effects after TM discontinuation). From: http://clincancerres.aacrjournals.org/content/6/1/1.full