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CourtneyL 02-06-2009 05:05 PM

Brain Mets - Advice and Encouragement Needed
 
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

Barbara2 04-07-2009 08:03 PM

There is a lady who lives in my community who was diagnosed with her2+ breast cancer, stage 2 (couple of nodes), in the Spring of 2002; took part in the herceptin trial. Her body is still NED, but in 2005 she had a large brain met. Couldn't lay down without the room spinning; slept in a chair.

The tumor was removed, followed by WBR. I do not know if she was given any chemo after the WBR. She is doing well today. She's a teacher, and is still teaching.

You are in my prayers.

StephN 04-07-2009 09:43 PM

Dear Courtney -
Such a hard time for you these days! I, too, am just aghast at all the violence these days.

Keep your eye on the prize - to eradicate those brain mets. You may want to go back and review Brenda Hutch's posts when she was trying to decide the same questions you have. She went for the "whack-a-mole" route and then Tykerb.

Most of us who have had the initial gamma or cyber treatments have done well. My hope is that you can get your team to agree with this method. I think your age is a factor in trying to hold the WBR as a last resort.

Our thoughts will be with you.

karenann 04-07-2009 11:27 PM

Courtney,
I am praying for you sweet girl. I believe you and your team of doctors will come up with a good plan.

Stay strong.

Karen W.

Mary Anne in TX 04-08-2009 05:46 AM

Courtney, I'm just posting to cheer you on and to encourage you to keep on believing you will soon be NED!!!
Yes the world is a bit wacky, but people like you can always help to keep it in balance! Keep fighting and believing.
I'll be praying for NED to happen quickly. ma

Ceesun 04-08-2009 07:24 AM

I thought I read a study that tykerb and xeloda could be a preventative for brain mets..can anyone clarify this. Ceesun

pattyz 04-08-2009 10:41 AM

You are way too young, dear!!
 
Since I have avoided WBR since 9/02, this is what I have to offer. I wish it was not so long:

Dec. 1999: Age 50, Dx'd Invasive Ductal & Inflammatory.

Jan. 2000: Mast., 6/26 pos. nodes. ER+PR-, Heu2+++ StageIIIb

July 2002: Dx'd mets, mediastinal node/s , (surgical biopsy), 'spot' on lung and pelvis.

Sept. 2002: Dx'd brain mets. (mininally symptomatic) Two lesions, 1.5cm, 6mm. SRS focalized tx successful. Refused WBR.

Nov. 2002: Navelbine/Herceptin 4rnds for systemic mets, scans show NED.

March 2003: Progression of brain mets. 14 new lesions visable throughout brain, including a 3mm in brainstem/pons. Asymptomatic. Continue to refuse WBR. "Watch and wait " approach, treating in small batches (choosing largest, most problematic first) with two more SRS, two CyberKnife procedures through May 2004 (that's over the course of just over a year!) NED in body.


March 2005: Progression brain mets - maybe 10 new lesions, asymptomatic. (otherwise NED) 'watch and wait' approach until...

Aug. 2005: Dizzy 24/7 in the course of just one day. Begin Temodar/Xeloda.

Sept. 2005: Following 2 rnds T/X, MRi shows response of nearly 50% shrinkage in many brain mets, including one 'new' in brainstem/pons area. Dizziness gone.

Nov. 2005: MRi duplicate of previous films- after 4rnds T/X, mets remain responsive w/ more shrinkage nearing 50%. Continue Temodar/Xeloda.


Dec. 2005: Onc confers w/rad onc re: past scans. Determine that some of the 'new' lesions are not new at all, but old treated spots just vaguely visable. Current count 6-8.

Jan. 2006: MRi shows all stable. Continue chemo combo.


May 2006: Mri reports "stable, minimal edema, no new lesions." This report details the eight remaining brain lesions, 6 clustered in cerrebellum with one on pons/brainstem, one frontal lobe. Most being 2-5mm. Just one of 8mm and one of 1.5cm. No symptoms. Continue on chemo break, no other tx's currently.


July 2007: After 9 mos. 'Stable': Progression. After a break, resume Temodar (w/the Xel) and add Tykerb for first time.


Wow. I am still doing the Temodar w/Xeloda for FOUR YEARS..and the Tykerb for almost two. Without ever doing WBR....

See onc tomorrow to see what latest report says on last wks. Mri.

You can do it, too, Courtney!!
xoxoxpattyz

karenann 04-08-2009 12:13 PM

Patty, I told Courtney about you and your successful treatment for brain mets. I am so glad you posted.

Karen

chrisy 04-08-2009 12:39 PM

Pattyz,
Of course, nobody wishes to have such a long list...on the other hand, the fact that you have a long list gives us so much hope. Thanks for posting.

Courtney, how could you not feel angry...nothing about this is in any way fair. You are doing the right thing by pushing for the best options you can. Perhaps getting into UCSF or Stanford will give you better access to cutting edge trials, as well as good options for local treatment of what you are dealing with.

Wrapping good thoughts around you....
Chris

hutchibk 04-08-2009 09:44 PM

Courtney - here is what we did to treat my five brain mets and five punctates after we found them 2 years ago. (the bigger ones ranged in size from 3mm to 9mm, and the punctates were pinpricks/seeds).

I chose to hold off on WBR or targeted radiation in favor of trying a different, less invasive method first. I started Tykerb/Xeloda and the docs watched me via MRI monthly. At 6 months on Ty/Xel, my brain mets shrunk, the punctates and the smallest four by 100%, and the biggest one by about 85%, and all were rendered inactive - did not shine on PET or MRI for 18 months. I stayed on Ty/Xel for 18 months with fantastic results. Last August we saw the original bigger spots start to shine on MRI again (only the biggest one increased in size by 2mm and the punctates have never shown up again and there were no new spots), so we decided that it was time to do targeted radiation. I considered all of the methods (Gamma - which required a halo to be screwed into my skull, Cyber, and IMRT.) The radiation oncologist I chose to go with uses IMRT (Intesity Modulated Radiation Therapy).
Here's some helpful differentiating info about the different brain radiation therapies:

Whole brain radiation involving treatment to all the brain tissue. This is often used for metastatic disease to provide treatment to parts of the brain where disease may be present, but does not show up on scans.

3-dimensional conformal therapy (3-D conformal) refers to a method of treatment delivery that incorporates 3-dimensional computer planning and treatment systems to produce a high-dose area of radiation that conforms to the shape of the area to be treated. This technique allows the delivery of precise doses of radiation to the tumor through multiple treatment fields while sparing surrounding tissues.

Intensity modulated radiation therapy (IMRT) which utilizes a more sophisticated system of shields within the machine allowing a higher dose of radiation to be delivered to the tumor from multiple angles, while minimizing the effects on surrounding tissue. This form of 3-D conformal radiotherapy allows a precise adjustment of radiation beams to the tissue within the target area. It is used when a high dose of radiation is necessary to treat the tumor and critical normal tissue can be spared.

Stereotactic radiosurgery (Linac based or Gamma KnifeĀ®) is a type of external beam radiation therapy using a very sophisticated treatment delivery system that delivers a high dose of radiation directly to the tumor in a very precise manner minimizing the radiation delivered to normal brain tissue. Several weaker radiation beams are aimed from different directions and come together at the tumor to deliver a high radiation dose directly to the tumor. This technique is often used when surgical removal of the tumor would damage essential brain tissue or when the individual's overall medical condition does not allow surgery. In some cases only one treatment is given.

Stereotactic fractionated radiotherapy may be an option for individuals with larger tumors who wish to avoid surgery or where the tumor is very close to critical normal tissue structures (i.e. optic nerves, optic chiasm). The technique is similar to the process described for "stereotactic radiosurgery" but each treatment is divided into smaller doses and is delivered over five to six weeks.

Treatment Side Effects

Side effects of the therapy can vary depending on your tumor and the type of treatment you receive. Possible effects include headache, skin irritation and scalp redness (similar to sunburn), fatigue, hair loss, change in appetite and unsteadiness. Some side effects may be treated with steroids (Decadron or dexamethasone) or other medications.
I had a plastic head/shoulder frame created (sort of like plastic version of a paper mache' technique) that snapped to the table and held me completely in place for treatments. I went for 5 days in a row (actually Weds, Thur and Fri separated by the weekend off and then Mon and Tue). He mapped my beams to attack each of the four spots from 19 different angles. I was on the Varian IMRT table for about 15 minutes each time. It couldn't have been easier. We also switched my treatment from Tykerb/Xeloda to Tykerb/Herceptin. So far my results have been fantastic. 7 months later scans are clear and SEs are nill.

During my IMRT, I did have some mild side effects for the first few days... but they passed after the weekend off. Day one I had a headache during the evening, but extra strength Motrin helped. Day two (and the weekend days) I felt knocked down, fatigued and flu-ey with some nausea (because one of the beams triggered the nausea center in my brain), but by Monday, all SEs were gone completely (without using steroids) and never came back. I did lose hair in the areas where the beams were aimed, which left me with a haircut that looked like I had the mange, LOL, but it started to grow back in after 2 months and by 4 months I have a cute short haircut again. No more mange. All in all, I couldn't have had a better experience.

I would recommend considering IMRT treatment. It's also quite a bit less expensive than Gamma or Cyber as the technology/machine that is used is just not as expensive to buy upfront as a Gamma or Cyber brand of machine.

hutchibk 04-08-2009 09:49 PM

Ceesun - I believe that the preventative aspect of Tykerb is still in trials. I believe Dr. Winer at Dana Farber is on the forefront of that research.

karenann 04-09-2009 08:42 AM

The people on this board are awesome! All of the sharing, advice and prayers have to help!

Sending blessings, healing prayers and love,

Karen W.

Shobha 04-09-2009 09:37 AM

Dear Courtney,

I am can hear your pain and frustration and it makes me cry. I am praying really hard for you. I pray that what ever option is choosen, gamma or WBR, it makes you NED in the brain and you are filled with hope again!

Sending lots of positive vibes and hugs your way!

love,
shobha

Faith in Him 04-09-2009 09:57 AM

Courtney,

I truly understand your pain and frustration. Cancer is not fair, period. But there is lots of reasons to have hope. Many have successfully battled brain mets. I am holding you up in prayer that you and your doctors find just the right treatment to get you back to NED.

Lani 04-09-2009 10:21 AM

I just posted this yesterday...it was hot off the press and the work was done
 
at UCSF. It showed the end result of doing WBR first in terms of Overall Survival was no better than going straight for gamma knife. Is your doctor among those listed as authors?


Don't let the statistics frighten you. There are quite a number of ladies on this board who have defied these statistics. When/if all the cancer centers could get together and pool their results on her2+ breast cancer, I would not doubt that the numbers will be MUCH different.

This just happened to be my post on 4-7-09:

IMPORTANT LESSONS--UCSF reviews 14 years of experience with gamma knife treatment of
brain mets from metastatic breast cancer

Lessons (if prove out in others studies as well)--

1)upfront whole brain radiation therapy may not improve things vs upfront gamma knife

2) having more mets may not be associated with a ahorter survival time than having few mets !!!

As with other studies, her2 +ivity associated with longer survival



Int J Radiat Oncol Biol Phys. 2009 Apr 2. [Epub ahead of print]

Gamma Knife Radiosurgery for Brain Metastases from Primary Breast Cancer.

Kased N, Binder DK, McDermott MW, Nakamura JL, Huang K, Berger MS, Wara WM, Sneed PK.
Departments of Radiation Oncology, University of California, San Francisco, School of Medicine, San Francisco, CA.
PURPOSE: The relative roles of stereotactic radiosurgery (SRS) vs. whole brain radiotherapy (WBRT) in the treatment of patients with brain metastases from breast cancer remain undefined. In this study, we reviewed our experience with these patients. MATERIALS AND METHODS: We retrospectively reviewed all patients treated between 1991 and 2005 with Gamma Knife SRS for brain metastases from breast cancer. The actuarial survival and freedom from progression endpoints were calculated using the Kaplan-Meier method. RESULTS: Between 1991 and 2005, 176 patients underwent SRS for brain metastases from breast cancer. The median survival time was 16.0 months for 95 newly diagnosed patients and 11.7 months for 81 patients with recurrent brain metastases. In the newly diagnosed patients, omission of upfront WBRT did not significantly affect the MST (p = .20), brain freedom from progression (p = .75), or freedom from new brain metastases (p = .83). Longer survival was associated with age <50 years, Karnofsky performance score >/=70, primary tumor control, estrogen receptor positivity, and Her2/neu overexpression. No association was found between the number of treated brain metastases and the survival time. CONCLUSION: We have described prognostic factors for breast cancer patients treated with SRS for newly diagnosed or recurrent brain metastases. Most patient subsets had a median survival time of >/=11 months. Unexpectedly, upfront WBRT did not appear to improve brain freedom from progression, and a larger number of brain metastases was not associated with a shorter survival time. Breast cancer might be distinct from other primary sites in terms of prognostic factors and the roles of WBRT and SRS for brain metastases.
PMID: 19345514

CourtneyL 04-13-2009 08:39 PM

Wow, what can I say? I am overwhelmed with the outpouring of encouragement and support. You ladies are AMAZING! You continue to inspire and fill me with hope. Thank you SO MUCH for your valuable advice; sharing your personal knowledge and experience. I am armed with so much information.

My onc and the first radiation oncologist I spoke with are pushing for WBR but I am still hopeful we can do Gamma or Cyber Knife. I've got an appointment at UCSF tomorrow and hope to get an appointment at Stanford later this week. Still don't know what I'm going to do but I do know how its going to turn out - I will get rid of these things!

I will keep you all posted. Thank you again. Know that you are all in my thoughts and prayers every day.

With love,
Courtney

Paty 04-13-2009 08:59 PM

Dear and sweet Courtney,

Your words have brought tears to my eyes, and you have made me feel that rage again, that rage that make us even more aggressive to beat this bad illness.
I send you my love and a big big hug. I am sure there is an answer out there for you and for all of us.

With love,

Paty

Darlene Denise 04-14-2009 08:20 AM

Courtney, Honey:

You are on the right track. Stay your course. Stanford is THE place to go for radiosurgery. I found all of the docs had an obligation to encourage WBR since that is Standard of Care, but, I also learned there is no right or wrong answer about this and YOUR preference DOES matter. You sound fistey, speak your preference and demand they listen. I found the more educated you are and the more realistic you are about outcome, the more likely they will listen to your wants. It sucks enough to have this friggin disease, the least we should have is the treatment options we want.

My onc tells me I want "cowboy medicine" and I say "saddle up, chemosabe." And yes, I have a pink Cowgirl hat!!

Giddie up girl, and only the best to you and your supportive family.

Love
Darlene


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