More Brain Mets - New Plan Thoughts?
 

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.

Re: More Brain Mets - New Plan Thoughts?
 

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

Re: More Brain Mets - New Plan Thoughts?
 

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.

Re: More Brain Mets - New Plan Thoughts?
 

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

Re: More Brain Mets - New Plan Thoughts?
 

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

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

Re: More Brain Mets - New Plan Thoughts?
 

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!

Re: More Brain Mets - New Plan Thoughts?
 

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

Re: More Brain Mets - New Plan Thoughts?
 

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

Re: More Brain Mets - New Plan Thoughts?
 

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

Re: More Brain Mets - New Plan Thoughts?
 

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!

Re: More Brain Mets - New Plan Thoughts?
 

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

Re: More Brain Mets - New Plan Thoughts?
 

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.

Re: More Brain Mets - New Plan Thoughts?
 

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

Re: More Brain Mets - New Plan Thoughts?
 

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

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.

Re: More Brain Mets - New Plan Thoughts?
 

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!

Re: More Brain Mets - New Plan Thoughts?
 

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.

Re: More Brain Mets - New Plan Thoughts?
 

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

Re: More Brain Mets - New Plan Thoughts?
 

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.

Re: More Brain Mets - New Plan Thoughts?
 

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.

Re: More Brain Mets - New Plan Thoughts?
 

This disease makes me so frustrated. The plan sounds like a great one. Of course, I have never had to deal with mets to the brain myself. However my mother did and it sounds like the route you are taking will be the best one. Sending out big hugs and prayers to you. You are a strong, beautiful individual and I know you will glide through this with grace.

Re: More Brain Mets - New Plan Thoughts?
 

Cortney,
I just want to say you are an amazing, inspiring beatiful women..inside and out!
I am praying for you and your in my daily thoughts. i believe the gamma knive is goin work for you as it did in the past and you will continue on your vaccine trial and continue with NED.
Many cyber hugs sent your way.
Joletta

Re: More Brain Mets - New Plan Thoughts?
 

praying for you dearest Cortney, you will be fine, dont worry, God will open the right doors for you and you will receive the best treatment

Re: More Brain Mets - New Plan Thoughts?
 

Courtney,

Wondering how you have been? The UW will be reviewing my medical records to see if I may be eligible for the T cells.

Please let us know how things are going.

Amelia

Re: More Brain Mets - New Plan Thoughts?
 

Courtney,

I have been thinking about you and praying for you. I know your gamma knife procedure starts in a few days, and I am praying for complete success in zapping the brain mets. I have changed my Avatar in support of you - go kick cancer's a_ _!

Love,

Carolyn

Re: More Brain Mets - New Plan Thoughts?
 

Just returned from ASCO Breast conference--two pertinent articles/posters, one closer to available treatment (as drug already approved for other cancers) than the other-- on drugs which might prevent and/or treat already existing her2+ brain mets

Author on both (among others) was Patricia Steeg and she made a presentation as well--unfortunately she did not man the poster on pazopanib or I could have asked questions...

Also unfortunately, I do not seem to be able to find a USB card reader that could help me post the poster abstracts from the meeting. So here is a poor attempt

263 Brain mets occur in ~35% of metastatic breast cancer patients whhoose tumors overexpress HER2 and contribute significantly to patient morbidity and mortality. The contribution of angiogenesis to tumor growth and progression has been debated. We tested the newly approved anti-angiogenic drug pazopanib for prevention of brain metastatic colonization of breast cancer.

In this study they seeded her2+ brain mets, but they did not grow out into macro-mets or grew very feebly (in rodents)

They concluded: These experiments support a clinical trial for the treatment or prevention of her2+ brain metastases.



255 Effect of an LPA1 antagonist on metastasis in preclinical models of breast cancer progression.

Drug made by Debiopharm SA Lausanne Switzerland

Debio 0719 acts as a metastasis suppressor and induces dormancy in the metastatic site. As such, it represents a new class of potential therapeutics. Phase I trials are expected in 2011.

I know these signs of progress seem very distant, but trying to keep your armamentarium of info Up TO DATE up to the moment!

Re: More Brain Mets - New Plan Thoughts?
 

Thank you all so very much for the knowledge and support. Lani, I will keep an eye out for pazopanib and debio 0719. And thanks for the info on Temodar, Jackie. I was thinking that might be a good next step too.

I'm suppose to have a phone consult today with an onc at UCSF to discuss possible directions after Gamma Knife. I'm wondering if Neratinib might be an option in a clinical trial setting. I'll see what she has to say.

Met with the Gamma Knife team at UCSF this morning and, pending insurance approval (fingers crossed), we are all set for Thursday morning. These pesky little buggers will be gone baby GONE!

Love the Avatar Carolyn!

Good luck with your decision on the t-cells Amelia! Let me know if I can answer any questions.

Re: More Brain Mets - New Plan Thoughts?
 

Yes, I will be imagining your brain as clear of mets and 100% healthy on Thursday. Do the Gamma Zap two-step.

One of the trials could be interesting.

Let me know if/when you come back to Seattle.

Re: More Brain Mets - New Plan Thoughts?
 

HI Courtney,
I will be thinking of you on Thursday. I also had a 3cm bran met over 6 years ago and needed two more surgeries for possible additional tumors that turned out to be radiation necroses. I too am interested in new developments for brain mets because they always remain a threat.
My thoughts are always with you.
Barbara H.

Re: More Brain Mets - New Plan Thoughts?
 

Praying that tomorrow will be the end of those pesky brain mets.

Re: More Brain Mets - New Plan Thoughts?
 

Courtney,

Saying a special pray for you today.

Amelia

Re: More Brain Mets - New Plan Thoughts?
 

Hello Courtney. I know that today is the day for your gamma knife procedure and wanted you to know that I've also said an extra prayer that all goes well and you get spectacular results. Thinking of you.

Barb A.

Re: More Brain Mets - New Plan Thoughts?
 

Adding my prayers and good wishes to the above. May the pesky burgers be all gone by now.

Re: More Brain Mets - New Plan Thoughts?
 

Hey...have no mercy on the cancer...but leave the burgers alone...or eat 'em;)

Re: More Brain Mets - New Plan Thoughts?
 

Hoping everything went well and you are clear and feeling well.
Please let us know how everything went when you are feeling up to it.
We are all praying things will get better going forward.
Rest up,
Emelie

Re: More Brain Mets - New Plan Thoughts?
 

Courtney
Just wanted to let you know i am thinking of you and wondering how you made out? What did you decide about the Temodar? I think you have a valid point to discuss before you start it!
Sending a big hug and lots of prayers

Re: More Brain Mets - New Plan Thoughts?
 

Courtney,

You seem to have a good plan, and I'm sending good vibes your way to wack those lousy brain mets.

Joan

Re: More Brain Mets - New Plan Thoughts?
 

just wanted to check in and see how you were doing.

I have a friend (young like you and I) who has just been dx with mets to the brain. She has a 5cm tumor and another one. I don't think they will know much until she gets the pathology back which won't be for another week cause she is just having the surgery this Thursday, November 4th. We are all in shock and very frustrated. She is not Her2+, but any advice would be very helpful! Thank you.

Re: More Brain Mets - New Plan Thoughts?
 

Thanks for checking in on me gals - you make me feel so not alone in this journey. I see that I neglected to post my additional good news. My onc took my CA 15-3 tumor markers at my last appointment (3 weeks ago) and they had come down 20% since the previous appointment 3 weeks prior to that. A 20% drop in 3 weeks without being on chemo! I take that as a very good sign that something is working. I'll go in again tomorrow and will have markers drawn again. I hope the drop keeps on dropping! We'll scan the body in 2 weeks up in Seattle and then scan the brain right after the holidays to make sure everything is on the up and up.

Sarah - I am sorry to hear about your friend. My advice would be for her to consider a chemo that crosses the blood brain barrier such as Xeloda or Temodar. Of course a second opinion is always a good idea.

Steph - Hope to see you when I'm in Seattle. I'll be there for scans and a booster vaccine shot on Nov. 16th. Got time for lunch? Would be lovely to see you again.

Re: More Brain Mets - New Plan Thoughts?
 

Such good news that your TM has dropped a good bit and that you are feeling better. It comes through in your post.

Unfortunately there are other young women with advanced cancer like you. But, you do a lot to give them hope that it is worth it to keep up the fight!

Also, good that you can get back on track with the vaccine trial here. Should be able to see you then!