More Brain Mets - New Plan Thoughts?

CourtneyL · 09-22-2010, 05:17 PM

Hello lovely ladies and gentlemen - I've been quiet on the boards lately because things have been going really well and I've been trying to push back cancer to the far corners of my mind. Well it just pushed back.

My latest brain MRI shows 8 new lesions. Crap, crap, crap. Will it ever end? So I guess we know that the super charged t-cells from the vaccine are not robust enough to go in and take care of any activity in the brain. Let's hope they're working below the neck to keep everything else at bay. My last PET/CT in August showed bone-only disease so that is a blessing.

But now, what to do about the brain? Here's what the plan is and then I would like the collective brain mets trust on this board to chime in with any thoughts/ideas/suggestions/feedback. Your opinions are invaluable to me and saved me from WBR almost two years ago - for which I will always be grateful.

Plan is to Gamma Knife all 8 lesions, hopefully in the next week or so. I started back on Tykerb today as we know it is thought to cross the blood brain barrier and I had much success on it last time. Then, after Gamma, my onc wants to add in Temodar (pill form of chemo also known to cross the BBB). There may be a chance that I can still continue on the clinical trial and receive my last two vaccine injections in November and January, respectively.

Thoughts? Is this a good plan? Do you think I should be doing something else? Is it time for WBR?

Love and healing light to you all.

mmoons · 09-22-2010, 05:40 PM

Crap, crap, crap is right! I don't have any advice or input other than you are such a rock star, Courtney, that I know whatever plan you choose, it will be your awesomeness that kicks cancer's rear. You have the best spirit and attitude! I am sorry you are having to make these choices after getting this news. Stay fierce!

Sending love and healing light back to you

Maureen

Jackie07 · 09-22-2010, 06:32 PM

Sounds like a good plan to me - using Gamma-knife to control the mets and Temodar to destroy them and then get back to the vaccine trial.

I'm rooting for you.

Lori R · 09-22-2010, 07:44 PM

Courtney,
OK .....another round with this darned disease.

As always, your game plan sounds ideal. Talk about a triple punch.

You already know that there are a number of success stories for Gamma Knife from many on the board. I believe most will vote to use Gamma Knife and save WBR as a last resort. You have a proven track record with Tykerb so it seems wise to add that to the list. Now a final punch with Temador. I don't recall many discussions on the site about Temador. Can you elaborate more on pros/cons of that option?

Wishing your strength and a peaceful spirit as you move forward...blessings....Lori

hutchibk · 09-22-2010, 07:53 PM

I love the whack-a-mole method... yes yes yes.

I think your docs ideas are sound. Let us know how it's going!

Sheila · 09-23-2010, 05:15 AM

Courtney
Hoping this round will whack those pesky mets away....I always like Brenda's rendition of the whack a mole game....hoping that this will keep your body clean and clear...
I too am asking, can I just get a break for more than a month???
Time to regroup and fight some more!

Ceesun · 09-23-2010, 09:19 AM

Courtney, My prayers and good wishes to you. Are you back on tykerb--does your doc want you to be on it?? Ceesun

Rich66 · 09-23-2010, 02:04 PM

Just throw in that Xeloda may have been integral to your previous success. Also..some research suggesting that although Herceptin is thought to not cross the blood brain barrier, it may still help Temodar. Maybe there is an argument for a multi prong "whack" at the her2 component?
More brain mets schtuff HERE
Radiation schtuff HERE

Barbara H. · 09-23-2010, 05:14 PM

Hi Courtney,
My thoughts are with you. I believe that you have chosen the right course of treatment. I had a single 3cm brain tumor to the prefrontal cortex in May 2004, and had surgery followed by gamma radiation. I also declined to to do whole brain radiation at the time. So far it has been the right decision.
Best wishes,
Barbara

Laurel · 09-23-2010, 06:14 PM

No knowledge on the brain lesions, but it sounds aggressive and should work. I just wanted to say that I am so mad you have to face this again. That said, I am very hopeful that this will put them away for good. Hang in there, brave young lady!

ElaineM · 09-23-2010, 08:47 PM

Keep putting one foot in front of the other and never give up !!

StephN · 09-23-2010, 10:17 PM

Dear Courtney -
Yes, just PUSH back in your turn.
If they will "whack" these latest lesions individually, let them do that. But it would be good to ask how much of that can be done before you are "maxed" out.

Multi-prong approach with as much targeted as possible seems to be the best approach. You are young and strong and can handle it now.

Let me know how it goes, and when you can come back to Seattle. See you on the UP side.

bejuce · 09-24-2010, 10:24 AM

OMG, Courtney, I'm so upset at this damn disease right now. I read your post yesterday morning and have been cursing cancer ever since. But, as the others above have said, you are young, strong, an inspiration and a hero with your upbeat attitude. You will beat this again, I'm sure of it. We're all here with you.

As for specifics on what to do, Gamma Knifing the bastards sounds like a good plan. I strongly believe in the technology - on a side note, I actually had the pleasure of visiting the maker of the CyberKnife for work and learned that they're doing everything possible to advance the machine to destroy and obliterate cancer cells everywhere. So, I say you have a great plan in place.

I'll be praying for you.

Love,

Marcia

v-ness · 09-24-2010, 03:59 PM

dear courtney, i have nothing to add about brain mets, but i just wanted to offer words of support. i want them to STOMP the moles! i hope the temodar and tykerb combo works for you and that they are indeed able to gamma knife every one of those lesions. as fast as science is moving, better drugs and methods of fighting just can't come fast enough. i am terribly sorry you have to face this after all you've already gone through and i sincerely wish you the best. valerie

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.

CourtneyL · 09-24-2010, 04:21 PM

Forgot to add that I CAN continue on the U of W trial as long as I have a chemo wash-out period of 3 weeks prior to my next two vaccine boosters! So that's a plus. Won't need a wash-out if I don't do the Temodar but if I do, I can take a break from it and still get my precious vaccine!

tricia keegan · 09-25-2010, 04:55 AM

I don't have anything extra to add Courtney except to send good wishes this regime works for you.

My friend had Temodar for her brain mets but sadly it did'nt work for her although I have heard it has shown sucess for others.

Patb · 09-25-2010, 02:59 PM

Do not have anything to add treatment wise but
just to let you know my thoughts and prayers are
with you to make the right decision and that it
will work. I like the whack a mole theory also.
Take care and keep us posted.
patb

Jackie07 · 09-25-2010, 04:29 PM

Courtney,

Adding Temador is just like having chemo after our initial surgery - it's a systemic treatment to ensure no new nodules popping up after the Gamma-knife radiosurgery.

Gamma-knife is a focused radiation directed at the 8 visible leisions to stop their growth. Since it is not a whole brain radiation, it will not have effect on the rest of your brain where new ones might be developing.

It usually takes a lot longer to see any effect from a radiation treatment. I'm certain your doctor intended to be sure that all the mets will be taken care of - both visible and invisible ones.

Jackie07 · 09-25-2010, 04:40 PM

Found these statements in a fairly new study on the treatment of most aggressive type of brain tumor:

Updated results from a large randomized trial conducted in Europe and Canada have shown that the survival benefit obtained by adding the drug temozolomide (Temodar®) to postoperative radiation therapy in the treatment of a brain tumor called glioblastoma multiforme persisted through five years of follow-up.
….
The results of a related study, published in the December 2005 issue of Lancet Oncology, showed that adding temozolomide to radiation treatment did not have a negative effect on the patients' quality of life.