Nervious about brain met treatment decisions

[trixkit]

I'm a long time viewer and infrequent poster to this group, but am now at my wits end regarding my wifes treatment options for brain mets. This past weekend severe headaches led to the discovery of brain mets. The head CT scan shows 4 mets with the largest being 1.5cm, two showed signs of bleeding. A follow up MRI showed an additional 6 very small mets. This is to go along with liver and lung mets that are currently being held in check and a breast tumor that is quite large.

She was originally diagnosed in dec-06, breast surgery was post poned to treat the other sites, the liver and lung. The surgery(right side mastectomy) was scheduled for 11/27, but the discovery of brain mets may alter that date if we go with the recomendations of the ONC and radiation folks. I'm not sure if that is the correct decision.

The recommendation is WBR(whole brain radiation), we are told that this is the best approach due to the number of mets and it may also target mets that are seeding themselves and don't show up on the MRI. Taking this approach would mean postponing the mastectomy and being off chemo for at least 4 weeks or longer if the surgury is squeezed in. I'm not sure this is a good choice as we have already waited almost 1 year for breast surgery.

I would like to explore gamma knife type of treatment on the 4 larger brain mets and keep the breast surgery on schedule. The breast tumor is huge and has to go. My wife is frantic to start some sort of treatment immediately, but she has blind faith in her Dr's who suggest WBR. I think going with WBR and putting everything else on hold for 4-6 is a decision that we shouldn't take lightly. We have an appt for a second opinion on thursday at NEMC in boston, a facility that offers the gamma knife.

How does one make such a decision, it almosts seems like a coin toss.

If we wanted to go the gamma knife route how do you convince your Dr's? I've seem others on this site with more mets than my wife that went the gamma knife route with great sucess.

In my mind we have two options.

(A).
WBR for 3 weeks.
No chemo for breast liver and lung for 4-5 weeks. Her ONC says possibly forever as she was very pessimistic after the discovery of brain mets. When my wife pressed her for a date, she gave her 3-6 months.
No surgery to remove large breast mass. This will have to be postponed during WBR.
If surgery is rescheduled after WBR this will further delay chemo to treat other areas.

(B)
Target 4 large brain mets with gamma knife type technology.
Keep breast surgery on schedule. That tumor has to go, it didn't seem to respond to taxol while liver and lung did.
Get back on chemo quicker. Her next drug was going to be xeloda, i've seen stories that this may cross the brain barrier.
Monitor brain mets, leave WBR on the table as a future option.


Her Dr's plan is option A, option B is my plan, but don't even know if it's really an option. I don't know how to convince her Dr's that this is an option, they should know better than I. My wife has blind faith in her Dr's, she doesn't go online at all, I wish she did.

Any opinions?
Thanks
John Cummings

[Joe]

John,

I agree with you. Use WBR only as a last resort as its side effects are debilitating. I might also suggest talking with either Dr. Nancy Lin or Dr. Eric Winer, both at Dana Farber. They have extensive experience with CNS tumors are are currently doing research with Tykerb, a drug that also crosses the BBB in combination with Gamma Knife.

I am hoping that PattyZ will also answer your post as she has a long history of treating brain mets with Gamma Knife and various chemos.

WBR is a serious decision and I applaud you for doing the research before making your decision.

Regards
Joe

[tousled1]

John,

I would have to hold off on WBR if I were you. To me that would be a last resort. I would discuss the possibility of either CyberKnife or GammaKnife for the brain mets first. You may also wish to talk with BHutch who has been on T/X for brain mets.

[trixkit]

Thanks for the input.

I've been searching the board day and night, have read most of pattyz's posts and others. Her case looked similar as she had many mets.

My wife is a mess, she just wants to follow the Dr's marching orders.

The radiologist left the impression that we have to take action now, I'd like to pursue other options, but don't want to wait if that will make the situation worse.

I'll try contacting those folks at Dana Faber.

Tykerb is currently not an option as her LFEV went down to 35 in June while on Herceptin, we are holding out hope that this will rebound

Thanks
John

[Esther]

John, you and your wife can make the treatment decision based on your options and what you feel is right for your case. You don't have to convince the DR's of it. Just make your choice and go with it.

So if after careful consideration, you decide that gamma knife is the choice you want, choose a facility and Dr's you trust and have it done there.

In Jan 06 I had a single lesion found in my cerebellum, I went to a local facility and they pressured me to go with WBR before SRS, saying that we couldn't know if there was seeding to other locations present. I went for 2 other opinions, and ultimately declined WBR, did SRS, and that was the right decision for me.

[trixkit]

Thanks Esther,

This board is fantasic.

I've convinced my wife to hold off with the WBR that was scheduled for today until we meet with the Gamma Knife folks and NEMC in Boston.

My wife is currently taking decadron to keep the symtoms at bay, so we have time to evaluate a second opinion.

My gut is telling me not to go with the WBR as the small and possible seeded mets aren't causing any issues at the moment and the large ones can be treated directly, hopefully. I'd prefer to keep the mastecomy on schedule. Then closely monitor the brain mets with regular testing.

Thanks again,
John Cummings

[hutchibk]

I hope Patty Z reads this too... I know that she has had tremendous and somewhat lengthy success with a brain cancer drug called Temodar (in combo with Xeloda). Not often used (yet) with breast cancer mets to the brain, but many have used it in this setting with some great results.

My options were similar to your wife's... and the docs leaned towards WBR. I leaned toward what I like to call the wack-a-mole method (hitting each tumor individually with rads as they showed themselves). But, with the access to Tykerb/Xeloda, we decided that we could start the drugs, watch my symptoms and MRIs like a HAWK, and avoid radiation to give the drugs time to work and see what that might gain us. Now, my mets were differently located, no swelling around them, and 9mm was the biggest of the three. With different parameters, I don't know that our "experiment" would have been an option. Tykerb/Xeloda worked for us for now with a surprising and seemingly complete response (will know for absolute certainty after MRI today), but I still have the "whack-a-mole" method on the back burner for the moment that we might see any other brain mets activity. And WBR is still in our tool box should we need a last resort option.

Here's link to PattyZs answers to me, but you may have already seen them:
www.her2support.org/vbulletin/showthread.php?t=27940

Best of luck!

[trixkit]

Thanks Brenda,

I followed yours and Pattyz's story and have reviewed hundreds of your posting, it's great to be able to bounce this off of experienced veterans.

I like the wack a mole theory as well. I think we've decided that is going to be our approach. Her ONC didn't offer much hope of long term survival if we went the WBR route. We totally reject this timelime, but it's our own fault for pressing the Dr for it.

With her liver and lung currently in check and breast tumor scheduled for removal I see no reason to give up hope. And we believe our best option is the wack a mole therory as that allows us to get back on the chemo quickly.

We are being told that chemo must be stopped during radiation, does this sound right? Are there drugs options that can be used along with radiation?

Thanks,
John

John

[Emmay]

Dear John,

I think you should follow your instincts on this and seek a second opinion- your Plan B sounds more appropriate to me. The largest brain met at 1.5cm is still well within the size range for effective radiosurgery, and more than one met can be targeted at a time. My sister has had a number of cyberknife radiosurgery treatments at Beth Israel Deaconess Medical Center in Boston over the last 3 years as small mets have appeared, and that treatment has been very effective at arresting the brain mets. The treatment was easy and painless; the only difficult side effect came when she was prescribed the steroid decadron to control swelling -- this can have strong effects on appetite, mood, coordination and ability to sleep, but if the dose is minimized and of short duration, it's not too bad.

When my sister was first diagnosed with 3 brain mets, they were too large for radiation treatment, and she had a craniotomy, followed by WBR. The side effects from WBR took a few weeks to appear -- it caused extreme extreme fatique that took several months to abate, in addition to the steroid side effects (which are dependent on dose and length of use). It's impossible to know now if/how many "seeded" mets were stopped by WBR -- but it's important to note that she has still had twelve or so additional mets appear, 2-3 at a time, since the WBR treatment. I'm not a doctor, but I would think that your doctors would be concerned about the breast tumor's ability to "seed" mets to other locations - why not remove the original source first.

We were not as well informed about WBR as I wished we had been when it was recommended for my sister. That said, I want you to know that, in spite of extensive and numerous treatments (lumpectomy, mastectomy, AC/T chemo, Herceptin, craniotomies, WBR, numerous Cyberknife treaments, etc) my sister(age 50) has recovered from each treatment, and while not as energetic as she once was, she is still very much herself, and we thank God and her medical team at BIDMC for that. Her doctors are in contact with and attend conferences with doctors from Dana Farber -- I know you will be in good hands seeking opinions from Eric Winer et al, as Joe recommends.

Best regards,
Emmay

[pattyz]

John,
I'm so very glad to see (however late I might be) that you've had these great replies. And, glad that you went directly to the PM to reach me...

Other than what I've said already, the fact that your wife has two lesions that appear to be bleeding really worries me as to what will be recommended...

A combination of surgical and focalized radiation may be an option, if the problematic lesions are accessible. I've not had nor seen any one else with this particular problem before.

As you may have gleaned, WBR does not have that great of a 'duratation' if indeed successful in the first place. That was one (two) of my reasons for rejecting it, no matter what scare was put to me.

I went in with as much knowledge as I could, listened carefully, stated my wishes, then said: "I'd rather wait and see" for the WBR. I did have a hard time getting what I wanted and was not treated well because of it...

I much preferred the CyberKnife over the other focalized, simply because it saved me from that damned screwed on headframe. Three times of that was way enough. Once I could have lived with!

As for chemos, as I told you, my success with Xeloda/Temodar has been very good. And the Xeloda might address your wife's remaining breast tumor, too. Who knows in advance? No one.

I believe after a time her heart should recover and the Tykerb could be looked at then.

we're all pulling for you,
patty

[jones7676]

I was also encouraged to have WBR - I declined. I had one surgically removed (easily accessible) followed by gamma knife to base as insurance. I had a second one removed utilizing stereotactic surgery and it has not come back. A third one has reared it's ugly head, but is much smaller and slower growing than the other two. I just met with the brain surgeon and he agreed with me that stereotactic or gamma knife was the way to go....so I am awaiting a call from the radiologist to schedule my procedure. I say avoid WBR if you can. However, my tumors have shown up one at a time. Good luck to both of you while you make these hard decisions.

[Vanessa]

I agree with the rest of the group to go with your gut and explore all of your options. I recently did wbr and it did make me very fatigued and forgetful. When I enquired about gamma knife, they told me that my tumours were too small, so I went ahead with wbr. I could not drive for 2 weeks and that was real hard on my family. After reading all of these posts, I am wondering if I did the right thing.

Anyway, I am hoping and praying that your wife gets connected with the right treatment for her. I am also sending healing thoughts to both of you.