brain mets have arrived
 

Hi all
I have some brain mets so would appreciate any advice. Seeing the onc to morrow.
Jackie (down under)

Re: brain mets have arrived
 

Jackie,
I could just scream...I hate this disease. I'm so sorry to hear your news. Although I can't offer any help I know many others here can. It will help the others to know how many mets your dealing with, & the size? I think several here have had good results with Gamma Knife? I'm sure they will be along shortly. Again I am so sorry about this rotten news. I will keep you in my thoughts and prayers.

Chelee

Re: brain mets have arrived
 

Gamma knife. Zap em away. Very easy and effective if you are a good candidate. Stay strong - many here, including our founder Christine, have survived brain mets.
Flori

Re: brain mets have arrived
 

Dear Jackie -
OH! I am so bummed to hear this development. Running into walls was a sign.

You may try the temador/xeloda combo that held Pattyz for so long, along with the targeted zapping. Or have your brain treated including gamma knife for the larger two spots.

Please hold tight to the knowedge that you will get through this, and the initial kick in the gut feeling will soften as soon as you have a plan to go with.

My best thoughts for healing energy heading your way down under.

Re: brain mets have arrived
 

Don't know if you have access to Tykerb down under yet, but if so, perhaps consider making a systemic change first, before radiation. That's what I did. I had 5 small mets and multiple punctates (pin prick sized seeds). We switched my treatment to Tykerb/Xeloda when I was dxed w/ my brain mets, and made a commitment to MRI every month for a few months to see what results we would get. My brain mets resolved and "went to sleep" for about 18 months with that treatment alone. Four of them decided to wake back up 18 months later, but the multiple punctates were wiped out by the Tykerb, so we then did IMRT targeted radiotherapy (similar to Gamma and Cyber, but my radiation onc likes it better having worked with all of them). It was 5 consecutive days of high dose targeted radiation and ZAP, they were gone never to be heard from again, except for the 5th rogue one which woke up a year later (last summer), which we zapped, now gone... I get a brain MRI every 4-6 months and all has been staying clear. We call it the whack-a-mole method. I am still on Tykerb, now with Herceptin and tamoxifen.

I chose this particular path in partnership and very close consultation of my oncologist and radiation oncologist working hand in hand. I was my onc's first patient on Tykerb, but he is sensitive to the desire to avoid WBR if possible... and I wanted to avoid WBR at all costs, if possible. I am THRILLED with the results to this point and wonder if other oncs have offered their patients this path as an option?

Re: brain mets have arrived
 

According to the following article, whole brain radiation has been improved dramatically and is effective without much side effect:

Nat Rev Clin Oncol. 2010 Jul 13. [Epub ahead of print]
Whole-brain radiation therapy in breast cancer patients with brain metastases.

Chargari C, Campana F, Pierga JY, Védrine L, Ricard D, Le Moulec S, Fourquet A, Kirova YM.
Medical and Radiation Oncology Unit, Hôpital d'Instruction des Armées du Val-de-Grâce, 74 Boulevard de Port Royal, 75230 Paris Cedex 5, France.
Abstract

Over the past 10 years, improving the outcome of breast cancer patients with brain metastases has become an important challenge. The suboptimal results of whole-brain radiation therapy (WBRT) in these patients have led to the development of irradiation modalities with new technical and biological approaches. By ensuring better sparing of critical organs such as the hippocampus, highly conformal irradiation therapy may partially preserve long-term neurocognitive functions. An additional radiation boost to the tumor bed improves local control. Radiosensitizing agents and radioprotectors that modify response to radiation have also been designed to improve the efficacy of treatment or prevent neurological toxicity. This Review outlines the current strategies and novel developments in WBRT, with a particular focus on new irradiation modalities and experiences of radiosensitization.

PMID: 20625374 [PubMed - as supplied by publisher]

Re: brain mets have arrived
 

Aaarg!
Some brain mets info/options/contacts HERE
General radiation info HERE

Re: brain mets have arrived
 

Sending Hugs Jackie. Michka

Re: brain mets have arrived
 

Exactly what we didn't want to hear but it seems there are a lot of people on this site who are thriving despite brain mets. Glad people have been able to provide advice re treatment options. Re Tykerb, we do have access to it here but the Pharmaceutical Benefits Scheme only funds it in combination with Xeloda and only so long as you show no progression. The real sting in the tail though is that once you have had Tykerb PBS will no longer fund Herceptin (meaning Tykerb/ Herceptin is not a funded option unless you can appeal to the generosity of Genetench and GSK.) However I got a good year of no progression of my liver mets from Tykerb/Xeloda but now am facing having to pay for Tykerb which is in the order of $250/week. Thankfully you don't need to worry about that at this point but you do have to think carefully and/or exhaust all other options before switching to Tykerb in the Australian context. So sorry to hear that news but am thinking and hoping things will go well,
Trish

Re: brain mets have arrived
 

Jackie
I am just gutted.Been hoping that the symptoms were nothing sinister. I know you will get some good advice here from many of our long term survivors.
We are all with you.

Ellie

Re: brain mets have arrived
 

Jackie - So sorry to read this news, but am glad several people with experience have written with their tx and effective results. When you see the doctor you'll have some more ideas for questions for him to get the best tx. Stay strong and remember many people here have conquered brain mets. Pam

Re: brain mets have arrived
 

Sorry to hear this Jackie and glad so many have been able to advise you, stay strong and take inspiration from those that have been where you are and came through. x

Re: brain mets have arrived
 

No advice, Jackie. Just sending along my thoughts and prayers. I hope you have a plan when you see your onc. Hugs.

Barb A.

Re: brain mets have arrived
 

Oh, Jackie, I am stunned to hear this. No advice from me either, just sending many hugs and prayers.
Seems like you got some great suggestions from some of the gals/guys here.

all the best
caya

Re: brain mets have arrived
 

Jackie: This is just really shitty news. A complication that you didn't need or deserve!! I will remain hopeful you can attack the bastards with Gamma or Cyberknife. Keep us informed and we will keep you in our thoughts!!

Re: brain mets have arrived
 

Jackie I am so sorry for this. You have received some good tips from members and probably will get more. We pray for a treatment that will get rid of the mets permanantly. Modern times have led us to better treatments with each year that passes.

I have a her2+ friend who had a good sized brain met about 4 years ago and it has not returned; it was cut out, but I dont know by what process. She also had WBR.

Praying for your healing.

Re: brain mets have arrived
 

Jackie, I want to add my support and confidence that you can do this! You've got the smartest warriors on the planet to give you advice and suggestions and you've proved what a warrior you are yourself. ma

Re: brain mets have arrived
 

Oh no! I am sorry that you have been diagnosed w/ brain mets. There are some good proven txs to destroy the suckers. Please know that you are in my thoughts and prayers right now.

Hugs,
Lexi

Re: brain mets have arrived
 

Yuck, yuck, yuck! I really hate to hear this news. There are so many amazing women on this board that have so much information to offer. Take advantage of all their experiences. Sending you big hugs.

Re: brain mets have arrived
 

Oh, Jackie, I am so bummed to hear your news! This just sucks!!!!!!!! That said, you know as well as I do there are many on this site who have kept their brain mets at bay with treatment, some with extended remissions. All is not lost, and there is much reason to remain very hopeful! Sending prayers heavenward for your healing.

Re: brain mets have arrived
 

Well crap! That's the first thing that came to mind. Sending positive healing energy your way. You are a tough cookie and I have faith you can beat this.

Re: brain mets have arrived
 

Oh. Shucks. This is not good news. I don't have any experience with brain mets, but I heard that Tykerb passes the blood brain barrier. You might want to ask your doctor about it along with the other things suggested by the other people who responded to your message.
Please take good care of yourself and try to stay positive.

Re: brain mets have arrived
 

Jackie
So sorry to hear about the new brain mets, but you have received lots of good vibes and advice from the troup leaders in dealing with brain mets here....the outlook today is brighter than ever by catching them early.....stay strong, just another bump in our bumpy road!

Re: brain mets have arrived
 

HI everyone
having an mri tomorrow and a ct to see if rest of body clear.
Will update soon. Thankyou for all your support.
jackie(down under)

Re: brain mets have arrived
 

Sending prayers and healing energy your way, Jackie. I pray that you are able to zap the buggers with some targeted radiation. This is a VERY effective treatment and can allow you to beat this. You are not out of the game, my dear. It is possible, it is possible. We are all standing in your corner, cheering you on as you face this latest struggle. Sending you heaps of support and love.

Re: brain mets have arrived
 

Jackie,

I see that many of the brain mets warriors have weighed in, and that you've got some good strategies. Hoping that the scans show no other progression - since herceptin is protective elsewhere but not in the brain, that's a real possibility.

Sending much love and prayers.
Chris

Re: brain mets have arrived
 

Are any of you that responded who have brain mets being treated with Avastin? My daughter is on that drug for her brain mets. We'll know if it's working end of next month when they do another mri of the brain. Keep the faith Jackie, we are all pulling for you.
Joyce

Re: brain mets have arrived
 

Jackie,

I had one brain tumor in my left frontal lobe which was about 2.6 cm and was too large for stereotatic radiosurgery (SRS) alone. That is, one shot to the tumor. The radiation oncologist and brain surgeon recommended surgery followed by stereotatic radiotherapy (SRT) to the tumor bed (five shots of targeted radiation), for roughly a 90% control rate. The radiation method used was IMRT. Surgery alone would have been only a 50% control rate.

The surgery was in mid October 2008 and regular follow-ups with brain MRIs every three to four months have shown no tumor regrowth or additional spots since then.

Since my breast cancer first became metastatic in early 2007 with spread to my lung, I've been on only Herceptin, no Tykerb or chemotherapy. However, I've had only local treatments to combat the spread. That is, a lung wedge resection to remove the original metastatic bc there, and radiofrequency ablation (RFA) to zap a recurrence there a year later in 2008, and then the craniotomy and targeted radiation to the one brain nodule.

I'm a happy camper.

Joan

Re: brain mets have arrived
 

Hi Jackie,
I am new to this site. I do recognize some ladies from another site. Just wanted to say hello and let you know that I too was recently dx with brain mets. I had a baseline brain mri in Dec/09 and it was clean. I was dx with a single 2 cm tumor on my right parietal lobe after a brain mri (following some sensory motor sensations in my left arm)-August 4/10. I opted to have cyberknife treatments (3 treatments 8gys each)-August 30, 31 & Sept. 1st). The procedure itself was simple, painless and non-invasive.
I did experience "hairloss" on day 14. I must say I was not prepared for this and the area of hairloss is about 4.5 inches (the affected area-where treatment took place). Despite the hairloss I still would have chose this treatment-based on my situation. I was told that hairloss usually does not occur. It depends if the treated area is close to the scalp, etc. In most cases, I am told that hair will regrow after several months. Hoping this is the case. Other than that I have not experienced any other negative side effects. I will have my follow-up 4 week brain mri on October 1st. Thereafter, I will have a brain mri every 3 months to monitor.
None of us want to learn that we have developed a brain met but there seems to be a variety of options out there. Take the time to investigate all your options! I wish you ALL the best. Please keep us posted.
Love each day...
Frankie

Re: brain mets have arrived
 

No advice here. Just wanted to show support to my sister down under. Hugs and well wishes and prayers. Lots of love.

Re: brain mets have arrived
 

Jackie,

Please add me to the list of friends standing behind you. How wonderful that the smart warriors have shared their wisdom with their posts. May all of this experience help you and your doctor pick a good path.

Hugs to you,
Catherine

Re: brain mets have arrived
 

Hi all
finished a 5 day course of wbr..but boy am I fatigued!

Re: brain mets have arrived
 

Jackie,
Nice to hear from you. Does this mean your done with your WBR treatments? Just think those pesty cancer cells are being "zapped". When will you have your next brain mri to follow-up? Remember take time to rest and don't over do it. Radiation is cumutive. Were you prescribed Decadron? I was and have been on it since August. It has been nasty with it's awful side effects. i have been graudually weaned off it. Thankfully, this is my last week at a very low dose.

Re: brain mets have arrived
 

Jackie,
I posted up above #33 (Not sure why it flagged me as a unregistered guest?). New to this site and still trying to naviagate my way.