Brain Mets - Advice and Encouragement Needed

CourtneyL · 02-06-2009, 05:05 PM

Are there any brain mets ladies out there to offer advice and encouragement? I am feeling a bit scared and overwhelmed and wondering if I should be doing more, getting second opinions, etc.

I was NED until a December scan showed 6 small spots (largest is 6mm) in my brain. Body is still NED. My onc put me on Tykerb (1250 mg/daily) at the beginning of January. My most recent (2/4/09) Brain MRI showed no new mets. Four of the mets were the same and two of them have grown by about 5%.

The new plan is to add Temodar and wait another 6 weeks to scan again. Then we will decide if either Gamma Knife or WBR is needed.

Has anyone out there been successfully treated for brain mets with drugs alone? Should I seek a second opinion? Are there any long-term brain mets survivors here? From the statistics I find online they speak of survivorship in terms of months. Its all pretty scary. I just need to hear from some of you who have traveled this road. What should I do?

karenann · 02-06-2009, 05:14 PM

There is a woman by the name of Pattyz who visits the Her2 board and I am pretty sure she has had great success with Temodar and Xeloda (I think these are the two drugs). I am sure she will visit soon and answer your question.

Karen

chrisy · 02-06-2009, 06:23 PM

Courtney, Brenda (Hutchibk) had good success with Tykerb/Xeloda only for over a year.

GemmaG · 02-06-2009, 06:40 PM

Hi Courtney,
Had have brain mets in June 2008 about 1cm. Had craniotomy done and 20 WBRT. My last MRI in December 08 showed no signs of brain mets.
Other sisters and bros here had good success with tykerb/herceptin, tykerb/xeloda...
you'll be in my prayers.

Love,
Gemma

Becky · 02-06-2009, 07:22 PM

Our founder, Christine is a long term brain mets survivor as is StephN. Temodar and Xeloda (as well as Tykerb) pass the blood brain barrier. You'll make it especially with being NED in the body. You just gotta work on it and get through this patch.

Have faith. Its tough but you're tougher.

Jackie07 · 02-06-2009, 10:40 PM

My brain tumor(s) surgeries had nothing to do with breast cancer. But I thought you might like to know that someone's functioning quite well after 2 brain surgeries (The first one lasted 23 hours - stayed in ICU for 10 days and then 30+ days in rehab; the 2nd surgery was 3 shots of Gamma-knife radiosurgery to control the three new nodules that had suddently doubled their size 11 years after.)

StephN · 02-06-2009, 10:57 PM

Hi Courtney -
Wanted to answer a few idea posed above.

1. PattyZ does take Temador and Xeloda, or has switched from Xeloda to Tykerb. She is on a winter expedition to sunny climes and may not have regular computer access.

2. BrendaH has done well on Tykerb to control brain mets.

3. I had two tumors in my brain that were treated with Gamma Knife. Nothing new since 2003.

4. I think you should KILL the buggers that are now showing with some kind of radiosurgery such as Gamma Knife. THEN go on the Tykerb. But first get your tumor load as low as possible.

I know you can make it - it is scary as I know, but you have even more tools with which to fight than I had.

Take heart and take control!

SoCalGal · 02-06-2009, 11:20 PM

Hi Courtney-
I agree with Steph. Also - I would get a consult appt ASAP with a brain surgeon and the whole Gamma knife (or radiation) team. Get all the opinions while you are waiting so you know exactly what your next step will be. I am going to post a new thread but want to say that this weekend marks my ONE YEAR BRAIN NED after a gamma zap of a met last Feb!
xoxo Flori

CourtneyL · 02-06-2009, 11:42 PM

You ladies are fantastic - I knew you'd come through with some incredibly uplifting words. Exactly what I needed to read tonight. I'm going to talk with my doc at next week's appointment about getting a consult with a brain surgeon and moving forward with Gamma to get these suckers outta here. Thank you again for the advice and encouragement. I plan on being around to bug you all with questions for years to come.

SoCalGal · 02-07-2009, 12:00 AM

Love your website - you have a lot of people supporting you so use that love and energy to face this crapola. Glad to hear that you will get consults. Knowledge is power especially in this setting. Have a great rest of your weekend.

lexigirl · 02-07-2009, 11:16 AM

Hi Courtney,

I am so happy that you have gotten some great advice from the other ladies here. They are so informed and are living proof of the success of the gamma knife procedure. NED is around the corner!

Lexi

Barbara H. · 02-07-2009, 01:10 PM

Hi Courtney,
I was diagnosed with a 3cm brain met in May 2004. May 2009 will be five years. You should plan to be around for a long time. My advice would be to consider Gamma Knife or stereotactic radiation, but I would try to delay WBR at this point. After radiation you could use the chemo to keep things stable.
Best regards,
Barbara H.

fullofbeans · 02-09-2009, 12:16 PM

I agree you StephN too: gamma knife them now, avoid WBR option if you can.

Also IMHO take some Boswellia, it does not have any secondary effect and that is what science experiments have to say about it:

"The complication of multiple brain metastases in breast cancer patients is a life threatening condition with limited success following standard therapies. The arachidonate lipoxygenase pathway appears to play a role in brain tumor growth as well as inhibition of apoptosis in in-vitro studies. The down regulation of these arachidonate lipoxygenase growth stimulating products therefore appeared to be a worthwile consideration for testing in brain metastases not responding to standard therapy. Boswellia serrata, a lipoxygenase inhibitor was applied for this inhibition. Multiple brain metastases were successfully reversed using this method in a breast cancer patient who had not shown improvement after standard therapy. The results suggest a potential new area of therapy for breast cancer patients with brain metastases that may be useful as an adjuvant to our standard therapy."

http://www.springerlink.com/content/q31805764x700512/

"A Boswellia extract marketed under the name Wokvel has undergone human efficacy, comparative, pharmacokinetic studies.[2][3][4] "
according to wikipedia

christie · 02-10-2009, 05:31 AM

Hi Courtney,

I always wait for an update from you, and always pray for you.

I pray that you and your doc are blessed with the right wisdom and both of you can decide the best way forward. i pray for right direction.

Everyone is so helpful in this site, as harrie said today (in another post) , this site is like a second home.

love
christie

CourtneyL · 02-12-2009, 09:53 AM

I got the go ahead from my doc to take the Boswellia supplement along with my Tykerb. I go for a follow-up scan in 5 weeks to see if we're ready for Gamma. I'll also be meeting with a radiation oncologist to discuss my options. Thank you all so much for responding with such great advice and encouragement. You ladies are the best and I want you to know that you are in my prayers every night.

I will keep you posted on how I do on the Boswellia and if it really is the miracle supplement it seems to be.

Warm wishes to all!!!

Joan M · 02-14-2009, 06:56 AM

Courtney,

I can understand your fears. I had brain surgery in October to remove a 3 cm breast cancer metastatic lesion in my front left lobe followed by stereotatic radio therapy (five treatments).

I agree with Steph that you should consider local treatment and then add Tykerb if necessary.

My lesion was just a bit too large for effective treatment with SRT alone.

I'm still waiting on my three-month follow-up MRI with the radiation oncologist, which is scheduled for mid March, and will let you know the results.

However, I did have a brain MRI about two weeks ago, which was suggested by a neuro-oncologist I was supposed to meet with last Friday, but I was in the hospital and we never met. He asked me to do an MRI before the appointment. I'm trying to get those results now because my onc and I are trying to decide whether to add Tykerb.

Hang in there.

Joan

CourtneyL · 04-07-2009, 06:38 PM

Just got the results back from my latest Brain MRI and I am feeling so many emotions - anger, fear, sadness, dispair, frustration. Why wouldn't the drugs work? What does this mean for my prognosis? Do I even want answers to these questions.

The MRI showed one new tumor (only a few milimeters big) and the same six tumors that were there before. Of those pre-existing ones, three of them are about 10% bigger. Effing cancer! I hate you! I hate what you have done to me and rest assured that you are an UNWELCOME invader whose days are number.

Meeting with a radiation oncologist at UCSF tomorrow to discuss options. I'm assuming he is going to recommend WBR although I would love to be able to just do Gamma. But I'm thinking I probably have too many mets for that. For those of you who have done it - any words of wisdom? Any advantage to doing stronger doses over a shorter time period or weaker doses spread out longer? Will I lose my hair? Will it grow back? I don't know why I just typed that. What do I care about hair when my brain is under attack and all I really want to do is live, bald or otherwise.

We're also going to meet with a doctor at UCSF who is in charge of clinical trials. If any of you know of any good ones that I might be eligible for, please let me know. It is overwhelming to search for them. I've tried several times.

I pray that I will be able to kick this and I hope that my goals are not unrealistic. I've read about many women successfully conquering brain mets, and I think, why can't that be me too, right? Or is my head just stuck way too deep in the sand. If it is, I kind of like it there. It is the only way I can deal with this now, especially with all the other women in my life gushing about their new babies. The only thing I have to gush about is this new effing tumor, and believe me, my gushing is more rage than anything else. I pray that God will allow me to continue to feel joy when I hold my baby niece on Easter Sunday and that if I do cry, they will be tears of joy for this new life that has come into our lives and not tears of pain and loss at what may never be for my husband and I.

Sorry for the long post. I just have so much running through my heart and mind right now. Oh, and the little girl found murdered in a drain ditch a few miles from her home, that was my hometown - Tracy, California. My mom taught at Sandra Cantu's elementary school. What is going on with our crazy world? Please God PLEASE bring us some joy. Our hearts are just breaking down here. Enough already.

Del · 04-07-2009, 07:27 PM

Oh Courtney, my heart aches for you. What frustrating news. I will be praying that God would show you the steps you should take now to ZAP these buggers!! I also hate cancer so much (as, of course, do we all), and long for the CURE!

Jackie07 · 04-07-2009, 07:43 PM

Courtney,

I am glad your doctor is ready to take some actions to eradicate those tumors in your brain. I will pray for your safe trip tomorrow and a good consult.

As an 18-year veteran of both (open) brain surgery (1990 - at age '30') and Gamma-knife RS (2001), I thought my answering your posting might give you a little bit more reassurance of your upcoming procedure. (I think they can do a 'shot' to zap each one of your brain mets - so you'll probably be getting 6 shots if you choose to do Gamma-knife.)

And look at Christine, not only did she conquer her brain mets, she founded this web group to help others with the same Her-2 diagnosis.

So 'be strong' and 'with courage' as you have always been. We are here to cheer you on.

ps. Love your picture in front of the pyramid!

Darlene Denise · 04-07-2009, 07:59 PM

Courtney: I know and feel, all too well, all of your emotions. I had seven of those bastards in my head on 8/22/08. All of the docs advised WBR was the only way to go. I kept focused on the fact that the volume was low and that they were all in locations that were suitable for radiosurgery. Most were 2mm and the largest 6mm. I was afraid to try the pharmalogical route for fear more would pop up and I wouldn't have a chance at radiosurgery. I knew I did not want WBR. I had a difficult time finding a facility that shared my preference to treat stereotacticly. When I did, a new MRI to start the planning revealed one more 1mm lesion for a total of eight so they called the procedure off due to the number of lesions. Many times during all of this I questioned if I was doing the right thing and the answer to myself was, yes. I requested my case be reviewed by the university's tumor board admist tears and begging and fortunately my case moved forward. I had Cyberknife on 9/16 and 9/17.

I then wanted to start taking Tykerb to help with any micros that all of the docs said were going to be left behind. My onc was not on board with my wishes since I was NED neck down and we would have no way to measure if it was working and how long we should use the drug. I went to Dana Farber Cancer Insitute and met with a researcher/breast oncologist who specializes in trials with brain mets and Tykerb. She was in agreement with my onc. Since all of the mets had been treated and there is no clinical evidene that Tykerb prevents brain mets she did not advise it's use especially since it has toxicity issues and may need to be used for progression later on. She felt it could be a tool if another lesion presents, then we monitor it for drug effectivness. She also indicated that when Tykerb is used for brain mets it is best not to use it with Herceptin since the doseage of the Tykerb has to be reduced to pair it with Herceptin and may not be as effective. At the time I was NED and did not want to leave Herceptin. By the way, she did not agree with my decsion to go with radiosurgery since there isn't clinical evidence to support it. She did say that my decsion may prove to be right, since there isn't data to say it isn't. I quickly learned that it is an educated best guess on treatment due to lack of data. So, I went with what I wanted for treatment.

January brought news that two previous spots on the liver had started to grow again so I chose Xeloda to address them with hopes that it may somehow help upstairs in the noggin. I remain on Herceptin.

I have had three brain MRI's since Cyberknife 09/08 and so far so good.

My advice, don't panic and rush, get ALL of the info and make YOUR best decsion, it will then be the right one for you.

Wishing you only the best...Darlene