View Full Version : Interesting brain mets digest/newsletter

06-24-2009, 11:02 PM

06-25-2009, 12:46 AM
Yessss!! These things being circled on our option list by Dr Burstein and OncoMan makes me more that ecstatic today. I keep bumping into it, must be a sign for us.....a sign of deep and persistent HOPE.>>Believe51

06-25-2009, 11:11 AM
I found this very interesting... I knew it would be of particular interest to you - and I am always looking for more tools to store away in my backpocket compendium.

06-25-2009, 12:47 PM
Two things that I owe great proaction by in this journey is......Thank goodness Ed is TM sensitive and I am always exploring and expanding my list of options. I know you too are content and feel the same way, Brenda. It is so vital IMO to have a list started, through time the list has been updated....add something....ah, take it away. I am so so thankful that I had this list because that in itself might have just saved my husband's life.

I have times of feeling helpless for him. It is always research and the questions I almost never have to ask OncoMan.....usually he has them answered before I ask. I love it when he asks if there are any questions, that is when I usually crumble my notes into a ball.

Research is something I wish I did not have to ever learn. I have always pushed that aside and empowered myself by overcoming that thought. Research and knowledge seems to be the one greatest tools I have to kick cancer in its teeth!

Here is to all of us in the brain met club and those whom are not. The head must usually always be treated seperately, as a seperate entity. It might be hard to handle the fact some may have had BBB drugs fail us in our mission. Please do not give up, help is on the way and science is running with this.

Miracle drugs are about to be born and added to our arsenal. Until then let us stand together and keep educated, it is our one common bullet to conquer this disease individually. Here is to being proactive and the courage to fight back for every breath!!>>Believe51

Joan M
06-29-2009, 04:37 PM



07-04-2009, 12:26 PM
I was glad to see this too, Brenda... it was late for me ie. tired and without much energy... so did not get to read it all.

But, had time to send it to a gal, young teacher, who has "70 brain mets". Hoped to give her a bit of hope herself.

Yesterday I received this:

>>> Re: New To List/Brain/Lung/Liver ...

Reply to the list (http://www.bcmets.org/archive/article/119239/reply)

From: Constantine <edge@evidencewatch.com (http://www.bcmets.org/archive/author?email=edge%40evidencewatch.com)>
Date: July 01, 2009, 15:20:37 (2 days ago)
Glad you found the BCWatchDigest site on CNS metastases (part of my Breast Cancer Watch website) - I'm the author and compiler, and I hope you will find it of help. It is maintained aggressively changing several times a month, sometimes even more frequently, so I am committed to keeping timely the review and critical appraisal of the latest - and pending - findings in this large and complex arena and I vet it regularly with oncology and neuro-oncology experts. Although it is as you must have noticed quite technical, and necessarily so (it is pending peer-reviewed publication), it should still be of value, and the references are live and hyperlinked to online sources to allow any degree of data mining by the user.
The review is dedicated to covering new ground not systematically covered elsewhere (capecitabine monotherapy or with TMZ/temozolomide, including latest positive findings just reported at ASCO 2009 and an important pending Turkish study; potential benefit of both capecitabine and bevacizumab in leptomeningeal, not just brain, metastasis; intra-CSF trastuzumab; systemic MTX (not intrathecal); high-dose AKBA (from boswellic acids), among numerous others).

Please note the underlined below, by me:

*** By the bye, you have figured, among others, in a recent installment of my Paths of Hope *** series:


*** this one on long-term brain tumor survivors ***

, which I periodically publish for the No Surrender Breast Cancer Support Forum, for which I serve as medical advisor:
specializing as I do in challenging advanced breast cancer, especially triple negative (TNBC), inflammatory (IBC) and metastatic (MBC) breast cancers, including CNS metatstases as well as bone, liver and lung, among others.

***So, it's nice connecting directly with you ***

through the highly valuable BCMets.org.
Constantine Kaniklidis
Medical Researcher
European Association for Cancer Research (EACR)>>>

p.z. here, now: So I was pretty surprised and wondered what's up with that??!! WHO? is this guy?? The "...among others..." included Christine I think. I sat with mouth open as I read through that first link he put in the message!

hugs to you, Brenda