Brain Mets - what did you do?

[hutchibk]

For all of you with brain mets, just wondering what were your treatment approaches? Surgery, WBR, cyberknife, gammaknife... combination of any of those?

And what follow-up chemical treatment is working for you? Switched to Tykerb?

[hutchibk]

Please anyone who has been treated for brain mets - let me know which approach or comination of approaches you have experienced.

I meet with the rads onc Friday morning. I will need to decide how to go after these 3 brain spots ASAP, and I would like to have as much knowledge as possible, especially from experience.

Thanks! Brenda

[StephN]

Hi -
Guess the other 'brainy' ladies are not seeing your post.

I had two tumors and went with the Gamma Knife route. you can find my detailed posts from Jan 2005 in this site. There are many other posts regarding brain mets if you use the search function.

When I went for the procedure they did an MRI that day with a finer cut to see if there was anything the other MRI had missed. Luckily there was not anything else. If you have only 3 small tumors, the Gamma Knife or similar non-invasive treatment should be effective against them.

I would save Tykerb for later as it is so new. Your team of docs may think you should try that.

[MichelleMoon]

My brain mets were discovered in January. I had 7 small mets, all in the 2-4 mm range. The radiologist thought there was a strong liklihood there were more we couldn't see, so she recommended WBR. I had 15 treatments to wipe them all out. Next week, we're going to discuss Tykerb.

WBR and the decadron are pretty tough. You can search lots of stories on this site.

Take good care!

[Christine]

Brenda,

I have had WBR and a total of 3 Gamma Knife procedures since 1999. From what you describe, I would suggest Gamma Knife as it is less invasive with fewer side effects.

You may wish to review a paper that our group produced for distribution to clinical oncologists at ASCO and San Antonio:

http://www.her2support.org/paper.pdf

Hugs
Christine

[dchips1]

I hav ebeen able to work, no driving and needed lots of extra rest. I had 6 lesions and the largest being on my brain stem. 1cm the rest range min size from 1-5 mm, The steroids and I have not got along to well, but I go back in 2 weeks for repeat MRI and willl do targeted to any areas that did not respond. I had no swelling or symptoms. I meet with the rad guy after the MRI and then the Onc the same day. Good luck in your decisions, the hard part is their is not a lot out there on WBR and the overall ius one better than the other and not alot of info regarding the side effects. Good luck to You Darita

[hutchibk]

Thanks everyone, that is the type of info I was looking for. I met with the Rads Onc (who I loved!) on Friday - he believes that we are dealing with a "seeded" brain, so 15 WBR sessions followed by 5 sessions specifically targeting the 3 spots we know about, will be a good comprehensive way to start. We won't treat the ones in the neck right now. They are poorly defined and it is believed that the chemo is keeping them in check. He said we can watch them and treat them later with rads if needed, but he doesn't want to "back us into a corner" with the neck right now - meaning that if we treat the whole area now (the spots are at C3 and in the marrow between C5/C6), we will also have to hit an area that is currently not affected (C4). He doesn't want to do that right now. He wants to hold out rads in that area until we do more chemo to see if that might knock it out completely in that area.

His magic machine is the newest and most state of the art. Probably the newest in Texas. I will be the inaugural patient in the thing. They have been calibrating it for the last 7 weeks. I start on Apr 23.

I meet with my onc tomorrow to talk about new chemo (Tykerb) potential. It seems that the Taxol/Herceptin has been working tremendously well except that it wasn't able to cross the blood/brain barrier. I hope that the Tykerb will work as well on the small spots in the chest nodes and neck as the Taxol/Herc. But knowing that it crosses the blood/brain barrier means that it will help protect the brain.

How long into your 15 sessions did you start having symptoms (i.e. fatigue, nausea, etc)?

And Darita, what were your probs with the steroids?

[dchips1]

Ok so I can't type very well either!! The steroids caused skin problems, knee swelling, made lyphedema better except for my hand, I lost weight on my rear end wound up with a decub on my tailbone, gumlines bleeding and blood sugars are high 200's. Taste buds are bad and now I feel like the good year blimp. You can also get infections easy, some people get energy or restless I did at night, a little benadryl, melatonoin helped. But all that goes with steroids. There is talk that when you do WBR you break or weaken the Blood brain barrier, which is true the Herceptin will cross. I meet with the onc around the 10th then maybe Tykerb if not good response from the rads. My steroids were started prior to my radiation but the spot on the brainstem if it swelled could cause instant paralzes including breathing, so I was on 4 mg BID x 14 days then 2 mg Bid x 14 days then 1 mg and was only off for 2 days after radiation because I had headaches, now on 1 mg once per day for another 3 days and then try again to be done!!
Good luck to you and e-mail if you can think of anything else!! Good Luck and Rest your brain needs it to make good decisions!!! Darita

[dchips1]

Then I needed more naps and resting, during the 15 the 2nd 2 weeks was the most tiring. I started on a Thurs and they do M-F and and no weekends. My vision would change when I got tired, steoids or radiation? No one seems to know, exactly why this was. I lost all my hair except a tiny pony tail at the end right around day 22, it was thininng and falling out prior to that around day 17. My scalp and ears were pretty bad, skin reaction biafine cream works nice. they did all the way down to my c-2. Take care God bless Darita

[hutchibk]

Thanks for all of the info Darita!

We talked today about changing the plan. We might be leaning toward Cyber or Gamma and then doing Tykerb/Xeloda to hopefully treat any seeds that might be percolating in the brain... Will talk again next week after the Rads Onc and Chemo Onc meet and discuss. That ways we can avoid backing me into a corner just now with WBR and save it for future use if needed (which we cross our fingers won't be necessary)-

It's an ever changing science, to be sure!

[pattyz]

Brenda,

I'm delighted for you to hear of this current 'new' tx plan!

I've avoided WBR since first dx of brain mets Sept. 4, 2002.

Have had 16 brain mets treated with five seperate focalized rad sessions over the course of about 18 mos. Three 'SRS' procedures, two CyberKnife.

I had 14 brain mets show up after the initial 2 were addressed successfully. We treated the most 'problematic' at a time, in batches of 4/4/6. This included a 3mm on my brainstem/pons.

I have had good response for my current 8 brain mets for the past 20 months using Temodar/Xeloda. Twice shrunk nearly 50%, since early on; now all stable, no new lesions, minimal edema. This includes another met on brainstem.

My focalized tx's were all successful with minimal short term side effects. Hair loss once to area treated, with total regrowth coming at a 'normal' rate.

Hope this will help 'fill in' some needed information spots for you.

Very best wishes for a long and successful treatment program,
pattyz

[supermehra]

Single brain met discovered 9 months ago 3 cms in size - came up suddenly as previous 9 month old MRI was clear.

Treated with Gamma, probably wrong decesion as the size was too big... but they sounded so convincing at the hospital. Was fine for 3 months, then started to develop a lot of edema & seziures, uncontrolled despite 16mg of decsamethasone

The met was 6 years after primary and 1 year after initial metastases to sternum. Treated with taxol, AC, herceptin prior. Her/neu 3+ er/pr-

Finally had the surgical excision today! Now waiting to start xeloda+tykerb. Will post results. (those who are wondering, the patient is my mother)

My discussions with doctors have highlighted:

1. Gamma is good for very small lesions <1cms; anything larger, avoid gamma if surgery is possible.

2. Tykerb cannot "de-mass" large tumours. I.e. they don't know if it will act against existing tumours. It is to block disease progression primarily. The GSK 329 patient trial suggests that mean avg time to progression stretches to 8.5 months.

3. Best choice for easily operable tumours in my humble opinion is quality surgery. Gamma can be saved for radiating the tumour bed in the future. Also, if gamma is avoided, WBR becomes a little more palatable to the brain... this is a simplistic view that the brain would be better off with least radiontion.

4. Gamma also tends to leave (in our case) post radiation necrosis; this may or may not result in edema leading to other complications unless controlled by steroids. Of course, this depends largely on the dosage of radiation.

No other distance metastases detected... hoping for the best... lot of hope of Tykerb+Xeloda combo.