What drugs or alternative treatments can cross the blood-brain barrier to help treat or prevent metastases?
I decided to start this discussion after reading the post of 2x, who, at only 34 (!) has a large brain metastasis. I, too, have had brain mets, though small ones, and whenever I've asked oncs, they don't seem to have an answer as to whether there's any therapy that crosses the BBB.
However, there has been research in this area. In germany, frankincense (boswellia serrata) is aparently considered a standard treatment for cancer in brain because it is one of the few substances believed to cross the BBB. Wormwood (Artemisia absinthium) is another possibility. Treatments for malaria, I just read this week, are under investigation in the U.S. to improve response to other therapies, and some apparently include substances from such plants.
yet, i don't know of any dr recommending these here. There is medical cross talk, but primarily about need for clinical trials to confirm.
What if we were to pool our efforts to get to the bottom of what is, at least, knowable?
I have little time at the moment--heading out of town to deal with my 90-year-old mother's stroke -- to research everything. I'm sure few people feel they have spare time at all. But, what if we were to pool our knowledge our efforts?
In the end, it seems to me that one role this board could play would be to seek out or develop our own ideas of what treatments we want studied. the brain is critical, for obvious reasons, but also because something like a 1/3 of all B/C patients show leptomeningeal cancer at death, most without ever knowing it.
Here are five simple questions:
1. What non-surgical therapies do we hear or can find out about that is most promising in terms of crossing the BBB?
2. Which drs -- or researchers, other patients or advocates -- are the most expert on this particular issue?
3. Is there a highly respected naturopathic or alternative therapist with BBB knowledge? (Many also believe in evidence-based therapy; it's just harder to get funded.)
4. What, if any, trials are there now?
5. Of the most promising-sounded treatments, what can we find out as to their interactions with our own therapies so we can present our findings to our individual doctors and avoid the traditional reticence against doing anything at all that might interfere with chemo?
I suspect we can pin down these questions. Inquire first at the b/c mets link below. Check the San Antonio b/c conference, find a researcher or two and call him/her (they'd probably love to know there's support for their research.) Perhaps even develop a simple request for a study to forward to NIH or whomever else seems appropriate. I'll volunteer to make calls, edit/write any letter if we choose to send, and re-post a draft -- if we get to that point. I just can't do it this week.
Here's a quick overview I found about substances like frankincense and wormwood:
"Even though some of these are already in use for treatment of other cancers and have shown promise in Phase I and II brain tumor clinical trials, no product has so far been cleared by US FDA to be a potential treatment drug for brain tumors. This is mainly due to the lack of well-designed studies, lack of knowledge of the multiple targets of action of these drugs, its side effects and interaction with the conventional chemotherapeutic drugs." (from "Evidence-based Anticancer Complementary and Alternative Medicine, 2012")
re/ blood-brain barrier, here are some places to start:
www.brainmetsbc.org (a great nonprofit)
http://scholar.google.com/scholar?q=blood+brain+barrier+breast+cancer+thera py+crosses&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ei=CnBGT_6PAY3KiALW4Izb DQ&ved=0CBoQgQMwAA
the always-cheery, but helps-you-understand-doctors'-expectations: her2support.org/metastasis/brain-cns/brain-metastasis
clinical trials: http://www.brainmetsbc.org/index.php?q=node/26 (a whole site on brain mets)
http://www.mnwelldir.org/docs/cancer1/altthrpy.htm -- this involves artiminisin, which comes from wormwood -- which a european doctor recommended to me as crossing brain barrier. she also recommended frankincense ("the good kind, from south africa, not india."
http://www.equilibrauk.com/seaminerals.pdf (this has far too many ingredients in it for me, including antioxidants, which my onco told me not to take with xeloda)
Thank you, 2X, the wonderful 34-year-old we want to support, for reminding me of the reason i chose my name: the very last thing we want to die of is ignorance!