Help! Brain mets besides lung mets

Kavy · 12-31-2010, 12:59 AM

Hi, everyone,
Yesterday I had a brain MRI, and today I received a call from my doctor's office that I have brain mets now, besides the 3 lung mets, and they want me to start on steroid. I'm lost, devastated, sad, etc., I'm not thinking straight, and I do not know what to do or where to go for the radiation. I live in LA, California, and the radiation facility they are sending me does not have gammaknife or cyberknife, so I guess they will suggest WBR. According to the information I received today, I have 3 brain mets, the biggest 2.5 cm, so I think I qualify for Cyberknife. Has anybody here been treated at Cidar Sinai, UCLA or Stanford? Does anybody take boswellia serrata instead of steroid? Is the steroid extremely necessary? What are the side effects of the procedures by your experience? There are so many decisions to make, so much research to do. Today I called Dr. Keith Blake office to make an appointment, but he does not take any insurance. I think I will see him for a second opinion. Tomorrow I will have some friends over to celebrate the New Year. I do not feel like celebrating anymore, but I do want to keep busy and don't think too much, so it will be nice to have my friends over, and it will help my family not to think too much about this news as well.
I wish you all a Healthy and Happy New Year, and may in 2011 we find the CURE.
Thanks. God bless you all.
KarlaV.

Trish · 12-31-2010, 02:57 AM

I'm sorry I have no advice to offer but I do send my warmest wishes for an enjoyable new year celebration with your family and friends and I hope you get the best treatment available. I am hopeful that these brain mets can be contained.
Trish

Pam P · 12-31-2010, 03:46 AM

Karla - I can relate to your feeling of desperation at learning this news of brain mets and the feeling of not knowing where to go or what to do with yourself, I am so sorry you are facing this news and having to make more tx decisions. I can't offer any advice to your on the type of radiation but encourage you to seek the best possible. There must me good choices in the LA area - even if you have to travel to get the recommended treatment. It sounds like you are already seeking out best options. So many people on this site have had tx for brain mets I'm sure they'll offer more help than I can. I just want to tell you I'm thinking of you and praying that these met will soon disappear altogether with radiation. And yes, I pray that 2011 can be the year of the Cure!

Sheila · 12-31-2010, 05:39 AM

Karla
Hoping one of our resident brain mets experts will chime in...Steph from Seattle or Brenda....Brenda has had this more than once...also Courtney i believe just went through it...from all I've read, gamma or cyber knife and not WBR is the way to go...I know they give you the steroids to prevent any swelling....if I remember, Steph was on them...sending hope and many prayers your way that this will be dealt with quickly and easily.....
May 2011 bring new hope to you!

Barbara H. · 12-31-2010, 07:26 AM

HI Karla,
It will be 7 years this May that i progressed to Stage 4 and was diagnosed with a 3cm tumor to my prefrontal cortex. I had surgery and stereotactic radiation. At that time they wanted to follow up with WBR and I refused. I am currently NED and on Tykerb and Hereptin. I work full time as a 5th grade teacher and live my life. I am sending this message to you because I want you to have hope. You will have to take steroids, and for me that was the worst part of the experience.
My thoughts are with you. You are doing the right thing by having friends over tonight.
Barbara H.

GracePang · 12-31-2010, 09:54 AM

Hi Karla,
I understand your feelings and I experienced the same in July this year when I heard my cancer went to my brain (I also have lung mets, plus liver mets). I was given no choice but WBR, since my tumors were more than a dozen. I fought my best not to have WBR, but gave in at the last minute. During the WBR, I didn't take steroid, but boswellia and it went well. Now, right before Christmas, they told me 3 tumors grows back and they will schedule Gamma Knife for me. I have not talked to me doctor yet and don't know what to expect for Gamma Knife; I guess you have to take steroid as Barbara mentioned.

Barbara, your story is very encouraging.
Happy New Year everyone!

Grace

hutchibk · 12-31-2010, 05:33 PM

It is time to make sure you get a second and maybe even third opinion. You want to find a Radiation Oncologist who will treat you with targeted radiation (IMRT - <Intensity Modulated Radiation Therapy>, Cyberknife, or Gammaknife) and not WBR, if it can be avoided... but also sometimes it is the only choice. With pretty small mets, I refused it and went to my docs with the Tykerb/Xeloda plan and regular MRIs to monitor, and the idea to attack them with targeted radiation when needed. I also told them that if my idea didn't work, that I would reconsider WBR. So far it has not been necessary and my Radiation Oncologist says we have probably avoided it altogether.

IMRT, Cyber and Gamma are all similar technology but pretty much just differently branded machines... with minor differences in which is better for various needs. IMRT is given over a few days (in my case 5 days, 15 min appts each day), Cyber is usually a one day visit, but you are in the machine for an hour or longer which would have tested my limits... and Gamma I am less familiar with, but many here have had it. I am pretty sure that Courtney has had Gamma on multiple brain mets with good results. Hopefully she will check in here.

My Rads Onc here in Austin TX is amazing. He has Varian IMRT machines. I don't know how the size of the tumor affects the best choice of machine, as mine were all pretty small (so far 6 in total have been zapped with IMRT, the largest was 9mm).

Kaiser Permanente in LA has IMRT/Varian machines... http://xnet.kp.org/scal/losangeles/s...radiation.html

Google/ask around for recommendations of Radiation Oncologists, Cyber or Gamma centers, too.

Ask your doctor if they can start you on Tykeb/Xeloda pretty quick. I got lucky and Tykerb/Xeloda shrunk my brain mets quite a bit and put them to sleep for about 18 months without any initial radiation (we MRIed every month for 3 months to be careful). Then 6 of them woke up and needed to be radiated, so we targeted them and poof they were gone. Haven't seen them since, and that has been almost 3 years now.

Jackie07 · 12-31-2010, 05:55 PM

http://news.bbc.co.uk/2/hi/health/7535733.stm

Elizabeth1227 · 12-31-2010, 09:21 PM

Dear Karla,

I just read your post. I am so sorry to hear of your new diagnosis. I too live in the LA area. I know a woman who heads a non-profit organization for cancer patients and she knows all the top doctors and has fought cancer herself three times. She has personal contact with these great doctors. I am so grateful for the doctors I have thanks to her. I have seen doctors at USC, Cedar's Sinai and St. John's in Santa Monica. I highly recommend to you Dr. Paul Song for your radiation. I had radiation in 2008 and also this year. He has facilities in West Hills, at St. John's in Santa Monica, and another in the Reseda area. I have had treatment at the first two. I like the technicians and facility best in West Hills. If you ask to speak to him and they do not do gamma knife (I don't know if they do or not) he will tell you where to go. I do know his facility has the most updated machines in the world. His phone number in West Hills is (818) 884-1683.

I wish you the best,

Elizabeth

hutchibk · 12-31-2010, 10:27 PM

This link is to another current thread where Courtney has been talking about her Gammaknife treatments. She lives in San Francisco and has had 19 (!!) treated with Gammaknife... please read it. It might hold many answers for you!

http://her2support.org/vbulletin/showthread.php?t=48241

You can also send her a private message and see where she goes in San Fran for Gammaknife treatment!

Best wishes...

Darlene Denise · 01-01-2011, 09:35 AM

Courtney is treated by Dr Penny Sneed at USFC. Dr Sneed is from Stanford and is very aggressive using focalized treatment.

I have had 11 lesions treated with Cyberknife. The first "batch" was 8 in 09/08 and in 06/09 three more showed up and were cybered.

Wishing you the best info and treatment options as you work your way through this.

Darlene

Kavy · 01-01-2011, 08:21 PM

Thanks everyone for your support, prayers, and information, they are very helpful. Thanks for sharing your experiences as well, they are very encouraging and give me hope. You guys are awsome, God bless you all.
Yesterday I had a great time with my family and friends, I hope you did too. I totally blocked this news from my mind, and it worked.Today reality kicked in, and I'm putting my fighting gloves to get ready for this big fight.
Today I'm dizzy, but no pain, I have been dizzy for a few days now. Does the steroid help the dizziness too, or it is for pain and swelling? I haven't taken it yet.
Does anybody have experience with Temador?
Again, thanks so much for your help, I will keep you all updated.
Love,
KarlaV.

Grace, I'm so sorry you are going through this again. I hope the gamma knife will make these mets disappear for good. Sending healing prayers.

Brenda, thank you for all the info. I have been on Herceptin/Tykerb for about a year now. I had Tykerb/Xeloda last year, and it did nothing for my lung mets. I wonder if it would work for the brain.

Elizabeth, thanks for Dr. Song's number. Could you PM me the name and phone number of this person who knows top doctors?

weety · 01-02-2011, 12:29 AM

Kavy, I don't have specific recommendations for you, but I do remember something that my onc said to me when she recommended that I get a 2nd opinion. She said that my insurance (kaiser) will only pay for treatment at their own facilities. However, if I go for a second opinion, and that 2nd opinion recommends a treatment that kaiser cannot offer me, they must pay for an outside provider to provide it for me. I don't know if this will help any in your case, but I noticed you said that your ins. company did not have the radiation type you wanted and the doc you went to does not accept any insurances. Maybe you can ask your insurance about what I was told???

joyce lutz · 01-09-2011, 06:54 PM

My daughter had 2 rounds of Temodar along with Avastin for her brain mets. Unfortunately, she is experiencing progression on that treatment plan so they are now putting her on Tykerb. We are pushing for Tykerb AND Xeloda but so far her onc won't do the Xeloda unless the liver mets progress. A second opinion we sought out agreed with his. She tolerated Temodar fairly well and had nausea and fatigue with it. However she only did 2 rounds of 5 days each and then was off of it for 23 days each time, but had Avastin every other week via IV. My best to you
Joyce

Joan M · 01-09-2011, 08:36 PM

Karla,

Brenda who has a lot of experience with brain mets pretty much said it all. But I'd like to add that my single 2.6 cm tumor was treated with surgery and then Varian IMRT. I had five dosages to the tumor bed about six weeks after surgery.

My tumor was considered medium-sized, and the doctors said I would get better control with surgery followed by radiation. I was very disappointed because I was hoping for just one radiation shot to the tumor.

I had the surgery in October 2008 which was followed by radiation in December and all has been well since. However, because you have more than one tumor, and since I never had radiation-only treatment, I'm not sure what the size limitation is for such single-shot radiation to a tumor.

Also, except after my brain surgery, I was not given a steroid during radiation. The radiation oncologist suggested that I try radiation without a steroid, and it worked okay.

You should probably be in a larger facility if you use IMRT, as this radiation equipment is much more complicated than Gamma Knife, and requires constant monitoring of the treatment program by doctors who do it a lot.

Good luck.

Joan

Kavy · 01-12-2011, 02:50 PM

Hi, everone,
Thank you for your help.
Here is a fast update. I'm trying to do Gamma knife, probably at Cidars Cinai ( any experience there?), but they suggested surgery to remove the cerebellum tumor that is 2.8cm, and can cause me problems if I do not have it removed first. Surgery probably with Dr. John S. Yu (have any of you heard about him?). One radiation oncologist there said if I did not do surgery I woul playing a russian rullet, and that if it was his brain, he would have surgery. Wow, brain surgery!!!1Went for an appointment at UCLA for SRS ( Novalis), I did not feel impressed by the radiation oncologist over there, and that got me very frustrated. Today I got a call from Stanford in Palo Alto, Cyberknife place, and they want to see my CD record to see if I really qualify for the procedure, apparently I do. But that is the question, all this burning in the cerebellum, either Gamma Knife, Novalis, Cyberknife without removal of the tumor might create scar tissue. How often this happen? do you know anybody who had problems later on for not having the tumor removed first?
Thank you so much for your help. I will keep you all updated.
God bless you.
KarlaV.

StephN · 01-12-2011, 03:42 PM

Dear kavy -
Glad you are persuing a radio-surgery of some kind rather than WBR. Don't let them scare you with that "Russian roulette" talk. This is breast cancer mets and are in treatable areas.

I had 2 brain area tumors. The largest was 3cm in my left cerebellum. I had Gamma Knife for both. They did talk to me about "splitting the baby" (having a surgeon remove that one and hitting the other small one with GK). They left final decision to me and I said Gamma them both. I did not care if they are trying to spread around the "work" - I just wanted it done and over.

I did need the steroid as the cerebellar tumor was causing inflammation which was impinging on a ventrical. (Yes, brains have ventricals as well as hearts.)

Let them treat ALL the tumors with whatever form of radiosurgery you can. The best thing about Gamma Knife is that it is all done in one day, with one treatment to each area. No going back day after day. I felt just fine the next day and was out driving and living normally.

SCAR TISSUE - YES, I have it. But it does not cause me any symptoms or side effects.

My surgeon actually called the cerebellum "a redundant part of the brain." It does serve some functions, but not the main ones that are in higher and deeper centers.

Praying that a good decision that you are comfortable with will appear. I have heard good things about Sinai from members here in the past.

joyce lutz · 01-12-2011, 05:09 PM

My daughter will probably be having Novalis LINAC. Short for Linear Accelerator. It is in the Gamma, Cyber Knife family of SRS Stereostatic Radio Surgery. They say they can kill her tumors w/it and I pray they are right! I hope you find the right procedure for yourself very soon. I know all this is so confusing but hang in there and it'll become clear what you want to do. My best to you.
Joyce

Ceesun · 01-15-2011, 07:43 AM

Just sending along good wishes for a speedy resolution. Sorry I do not have any advice on this, but you certainly have received many helpful comments from our Her2 experts. May God Bless. Ceesun

joyce lutz · 01-15-2011, 10:26 AM

Well we now find out that they don't want to do the SRS LINAC procedure until they see how the tumors react to the Tykerb and he doesn't believe all 7 should be done! This is AFTER the one dr. (the SRS surgeon himself) told us he could do all 7 tumors in two sessions and that all should be fine!! I just don't understand how he could've said that and then his team member tells us differently. Right now we are so disappointed and confused, not to mention angry! Any suggestions? My best to you all
Joyce