brain mets have arrived - Page 2

vlcarr · 09-12-2010, 08:17 PM

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.

ElaineM · 09-12-2010, 09:25 PM

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.

Sheila · 09-13-2010, 05:49 AM

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!

jhandley · 09-13-2010, 08:53 PM

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)

CourtneyL · 09-14-2010, 12:13 PM

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.

chrisy · 09-14-2010, 01:47 PM

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

joyce lutz · 09-14-2010, 04:38 PM

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

Joan M · 09-15-2010, 08:32 AM

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

frankie · 09-29-2010, 09:56 AM

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

MaryAn · 09-29-2010, 10:46 AM

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

Catherine · 09-29-2010, 10:13 PM

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

jhandley · 09-30-2010, 04:34 AM

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

09-30-2010, 04:59 AM

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.

frankie · 09-30-2010, 05:02 AM

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.