HER2 Support Group Forums - View Single Post - More Brain Mets

CourtneyL · 09-24-2010, 04:16 PM

Thank you all so VERY VERY much for your support and advice. It is reassuring to know that you think I am on the right path.

I am scheduled for Gamma Knife on October 7th. I have already started taking Tykerb and hope that it is slowing things down. Regarding the Temodar, DarleneDenise posted to me in a private message a very good question that I've been pondering. If I get all of the brain mets zapped and then I start Temodar (as has been suggested by my onc), how will we know if the Temodar is working? Obviously if I don't get any more brain mets we'll know it is probably doing something. But is that worth the extra toxicity? If I do it now, how long will I have to stay on it? Forever? Until more mets show up and we decide its not working? I'm going to discuss with my onc but I'm not so sure about the Temodar anymore.

Another friend in my local support group who has followed the Boswellia issue along with me with some interest sent me the following link:

http://bcwatchdigest-brain.evidencewatch.com/

In thinking about Boswellia some more, I think I wasn't giving it enough credit. I started taking it when I was first diagnosed with brain mets and my brain mets barely grew while I was on it (of course I was on Tykerb too so hard to say which was effective). What is interesting is once I started the clinical trial at U of W, I stopped taking Boswellia because they wanted me off all anti-inflammatories. Fast forward 5 months and I've got several brain mets now. Sure, hard to say if this is a cause/effect relationship but it does make me wonder if the Boswellia was helping prevent recurrence. So of course I'm back to taking it and after reading this latest article on Boswellia, I don't think I was taking enough. I'm now going to be taking 2 450 mg pills three times per day with food (to increase absorption). Its a little experiment I'm running on my own to see if this herb is more powerful than we know. My Gamma Knife is in 2 weeks. By then I will have nearly 3 weeks of high dose Boswellia (as well as Tykerb) to see if it has made any kind of difference. Maybe just maybe there will be some shrinkage. But if not, it can't really hurt.

Thank you again for your love, support, and knowledge. I haven't yet posted the brain mets news on my blog so very few people know about it. But of course, y'all are always the first because of the invaluable information and support.

Love and healing light to you all.

09-24-2010, 04:16 PM	#15
CourtneyL Senior Member Join Date: Aug 2008 Location: San Francisco Posts: 260	Re: More Brain Mets - New Plan Thoughts? Thank you all so VERY VERY much for your support and advice. It is reassuring to know that you think I am on the right path. I am scheduled for Gamma Knife on October 7th. I have already started taking Tykerb and hope that it is slowing things down. Regarding the Temodar, DarleneDenise posted to me in a private message a very good question that I've been pondering. If I get all of the brain mets zapped and then I start Temodar (as has been suggested by my onc), how will we know if the Temodar is working? Obviously if I don't get any more brain mets we'll know it is probably doing something. But is that worth the extra toxicity? If I do it now, how long will I have to stay on it? Forever? Until more mets show up and we decide its not working? I'm going to discuss with my onc but I'm not so sure about the Temodar anymore. Another friend in my local support group who has followed the Boswellia issue along with me with some interest sent me the following link: http://bcwatchdigest-brain.evidencewatch.com/ In thinking about Boswellia some more, I think I wasn't giving it enough credit. I started taking it when I was first diagnosed with brain mets and my brain mets barely grew while I was on it (of course I was on Tykerb too so hard to say which was effective). What is interesting is once I started the clinical trial at U of W, I stopped taking Boswellia because they wanted me off all anti-inflammatories. Fast forward 5 months and I've got several brain mets now. Sure, hard to say if this is a cause/effect relationship but it does make me wonder if the Boswellia was helping prevent recurrence. So of course I'm back to taking it and after reading this latest article on Boswellia, I don't think I was taking enough. I'm now going to be taking 2 450 mg pills three times per day with food (to increase absorption). Its a little experiment I'm running on my own to see if this herb is more powerful than we know. My Gamma Knife is in 2 weeks. By then I will have nearly 3 weeks of high dose Boswellia (as well as Tykerb) to see if it has made any kind of difference. Maybe just maybe there will be some shrinkage. But if not, it can't really hurt. Thank you again for your love, support, and knowledge. I haven't yet posted the brain mets news on my blog so very few people know about it. But of course, y'all are always the first because of the invaluable information and support. Love and healing light to you all. __________________ 4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++ April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response! Sept 08-Dec 08: Herceptin +Zometa for maintenance. Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait. April 09: Gamma Knife 10 brain mets, add Xeloda. Sept 09: Gamma Knife to 1 brain met. Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa. May 10- Sept 10: HER2 Vaccine Trial Sept 10: Add Tykerb for more brain mets. Oct 10: Gamma Knife to 7 brain mets. Dec 10: Switch from Zometa to Denosumab. Jan 11: Gamma Knife to 3 brain mets. March 11: Gemzar/Herceptin for lung/bone progression. April 11: More brain mets - Intrathecal Herceptin June 11: Ixempra/Herceptin for lung, soft tissue progression. Aug 11: Gamma Knife Sep 11: Abraxane/Herceptin Future: NED Send me a PM if you'd like to follow my journey on Caringbridge.