brain mets plan...T/X now & wait to do rads?

[hutchibk]

Sorry that this is posted twice, I mistakenly posted it on the Tykerb group - but realized that it should probably be posted here...

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9 AM today: My oncs started leaning back towards WBR over the weekend, (much to my dismay) due to deeper consideration of my brain mets. I thought we were going to do targeted Linac of the 3 spots and add Tykerb/Xeloda. But, the rads onc says that that is not the way he would go after further consideration, and he said that it is a really gray area with no easy answers. He would love for targeted rads to be an easy answer, but he doesn't believe that it is that easy. He believes that my brain is more than likely "peppered" with other little punctate spots that are beneath MRI detection just now. My med onc agrees with this assessment and they both think that WBR with Tykerb/Xeloda is the most prudent way to approach it...

Noon:30 PM today: I called the rads onc and expressed my fear about WBR and the long term cognitive effects. He said he understood. Then in convo I wondered out loud if we would lose any ground by waiting a few weeks (6-8 weeks) and getting started on the Tykerb/Xeloda first...then MRI again to see what it might gain us. He started getting on board with the idea, saying that he didn't expect that it would lose us any ground and that he expected in that amount of time for the 3 mets to only grow at most by about 10%, if they grow at all. And that that amount of time might be able to reveal to us whether or not more punctated spots start to show up. I started to feel really good about the idea and called the med onc to talk about it. He is leery of the idea at first, worries that we could lose ground with the brain mets, and is not ready to be too confident about Tykerb just yet, as it is so new... he is cautious, but is willing to give this plan a go, and says he would be surprised, yet pleasantly so, if we see some shrinkage from the T/X - as well as no new spots by that time. He is reluctantly on board.

9:00 PM tonight: I am all over the map about this. One minute I love the idea of giving it some time. The next minute I feel as if I might be making a HUGE mistake.

Oh, and my PET last week revealed that we have had slight worsening (while on taxol/herceptin) of the other mets in my mediastinal and neck, and that there is a new small met showing in the chest.

Yuck, yikes and HELP. I am at such a loss here. I thought I had a reasonable idea, and now I am second guessing everything beyond belief. I suppose I can live with it for a week or two, get into the Tykerb/Xeloda routine, and in the meantime do some more reasearch. Maybe see a neuro-oncologist? I am not too far from MD Anderson, but they don't do second opinions. They make you sign off from previous docs and sign on with them. I'm not willing to do that.

Any thoughts or ideas from you lovely ladies? Did any of you hear a similar theory from your docs? Is targeted radiation in this circumstance just a never-ending game of wack-a-mole? does WBR really work and does anyone ever escape the cognitive problems?
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[Lolly]

Hi BH,
I haven't had brain mets but have thought about the options currently available if I do get that diagnosis, and can only offer my idea of the approach I would try to take.
I would want to have targeted treatment to the 3 spots, start Tykerb/Xeloda and take a breather while deciding about WBR which I might decide to take also. It's a tough decision because the possibility of cognitive problems is very real. I think several of our gals have elected not to have WBR, have just had targeted treatment and done well.
Hope this helps, I know it's not easy to decide what to do.

<3 Lolly

[hutchibk]

We have talked at length about targeted, and they both believe that it would be a very very short term solution. That we would see the puntated spots grow and then in a few months we would see them again and again, possibly even with the Tykerb - and would be playing wack-a-mole with them. I know of a posting on the YSC site who had WBR and Tykerb, yet 6 months later showed up with punctated spots that were growing... she is currently looking for another answer to the problem. The rads onc says that the spot in my cerebellum would be a challenge to treat in it's smaller size right now, as it would damage enough else in that general area that we couldn't treat again if another nearby spot came up. It is so very confusing. Even for the docs. They
say it is such a gray area... I think I will seek out a neuro-oncologist and see what they think...

Is it an insurance problem to opt for wack-a-mole targeted treatment first and then use WBR if something shows up later? Could that be what is hanging them up on this a little bit?

Thanks Lolly!

[pattyz]

I guess I already shared my brain mets history with you, so for now just have a few comments on your current questions.

From my understanding the Tykerb can help keep brain mets from recurring, but not do much in the way of 'shrinking' current lesions.

I have had remarkable good results with shrinkage and stable, no new brain mets for the past 20 months using Xeloda/Temodar.

I have waited for treatment for a full yr when I had my second set of 14 brain mets show up... This was from treating the largest most problematic lesions first, the rest in stages.

With my current 8 brain mets, I waited four or five months to begin treatment at all.

And yes, they were right in my case about 'more being already seeded'. Those 14 showed up six months after my first focalized rads to orginal two mets.

It has also been my observation (and research) that WBR does not have the kind of success rate, IF effective in the first place, that they would like us to believe. You are right that recurrances happen time and again AFTER undergoing WBR.

It is all scary decisons. I was nervous about all of mine, but my gut told me to trust the knowledge I'd gained from the deep research I'd done. Yet, I put all my affairs in order, just in case...

Lucky for me that my mediastinal mets, plus spots, responded so well to Navelbine/ Herceptin back in late 2002. Have remained NED in bod since then.

The brain mets have been throughout my brain, including brainstem/pons. Many in my cerrebellum, too. But, the largest was just 1.5cm and that was at first dx.

I have never regretted refusing WBR inspite of the recurrances and additional treatments.

You need to finally just go with the plan that you feel safest with. It is all a crap shoot afterall, no matter what treatments or stages we go through. I hate to be bullied, and felt that the advice I received was of that ilk. I may have felt different if someone came across with compassion and an understanding of my desire for good QOL in the 'long term'.

very best wishes to you...and a big hug,
pattyz

[hutchibk]

Thanks so much Patty. Your info is such a HUGE help. If you would, can you re-share you brain mets history here... I don't know where to find it.

How many times have you had targeted rads? which kind of procedures for rads have you used? did you take temodar/xeloda at the same time as the rads?

Yours sounds like a treatment plan I could get on board with... your response has put my mind at ease. did you get side effects w/ temodar?

How long did you do Navelbine/Herceptin on 02 and on what cycle?

Luckily, I don't feel bullied by my docs, but I do feel that they like their plan enough to push for it. I don't mind pushing back, they can take it. I just got an email from my med onc telling me that to answer all of the questions I posed last night - he would get writer's cramp - so he asked to see me in office on Friday. (he is a fantastic man and quite the comedian, so we do have a lot of laughs through it all). I want to take him some alternate plans and approaches and see what he thinks. I will force him to expand the rubberband around his head a little!

Can I email with you about this? Thanks!

[pattyz]

Sorry for the length of this, I tried to be 'concise', but no luck!

Sept. 2002: dx'd brain mets. Opted for focalized tx, SRS Linear Accelerator - 'screwed on' headframe the worst of it. All day with frame on for about an hr on table. Totally successful. 1.5cm and 6mm lesions.

Scanned about every two months...

March '03 dx'd with 14 new brain mets, no symptoms, all small: 8mm down to 3mm. Fought tooth and nail, but had the support of my partner to keep refusing WBR when confronted by dire warning and angry rad onc.

? April '03: 4 brain mets, including 3mm on brainstem/pons treated with 2nd SRS. Successful, but needed a weeks worth of low dose decadron.

?July '03: 4 more brain mets done successfully with 3rd SRS procedure.

Dec. '03: 'Final' six mets treated in two CyberKnife procedures two days apart. These were all in my cerrebellum. I lost hair in tx'd areas, but it fully grew back in 'normal' time. The CyberKnife was also successful and I much preferred it. No screwed on headframe, but a very tight form fitted face mask.

I did 'need' a low dose of dec for a week after each procedure. None treated have recurred or become necrotic.

Back then, I didn't have the information to ASK for any added drug concurrent with tx's. So, no, I didn't have X or T along with rads.

May '05: MRi showed new 8 lesions. Nearly 1-1/2 yrs after last radiation.

My onc created a schedule of dosing just for me with the Xeloda/Temodar. Shortly afterwards, I found the small study done on bc brain mets using these two drugs with some small successes. My schedule: 2000mg Xeloda per day tot. x 14das. Along with 250mg Temodar per day x 7 days. two weeks off.

I have had no side effects other than fatigue and complicated constipation. Have missed my Zofran ONCE before taking the Temodar... never to be repeated!!! vomiting in wee hrs not fun at all......

And now, the reason for my current tx with my latest brain mets: the focalized rads are cumulative. All but two of these 8 are in my cerrebellum (one again on brainstem, one frontal lobe)... any more focalized rads to the area carry high risk of permanent damage.

yet......... I was once again advised to do WBR. sigh..... so you see, it has been one fight after another, yet my medical onc is totally 'on board' with my decisions. He likes being able to use me as encouragement to others )

Right before my first brain mets dx, I was dx'd with mediastinal nodal mets, spots on lung and pelvis. Following my initial rads tx for the brain, I became NED in body after a short time on Navelbine/Herceptin. Knock wood, still NED body.

If there is anything else I may be able to help you with, ofcourse! you can email me...

with hugs,
patty

[Joy]

love, prayers, courage and good decision-making mojo! I think Patty is such a great resource for all of us and has offered brilliant advice and great support. Please continue to share all of your thoughts and decisions and then how it is all working, okay?

[StephN]

Hi - Brain mets are scary, but we must get a grip.
I don't see why you have not sought out a specialized center for Gamma Knife or Cyberknife. With these radiosurgery techniques there should be NO worry about damage to surrounding tissue. Gamma Knife is accurate to within ONE MILLIMETER of the target!

In my case I had Leksell Gamma Knife done on two tumors in my brain. The largest was 3cm located behind my left ear in cerebellum. The smaller one was about 1/2 cm or 5mm and located in my superior vermis. They both have been treated successfully - I had no new spots show up since initial treatment in Jan of 2005.

There is a ton of info on this procedure and the research shows it is very successful when the patient has THREE OR LESS tumors. Get a cutting edge specialist and move on.

On the day of the GK procedure they do a special MRI with a finer cut and if there are any new spots that show they will put those into the treatment plan as well. Take advantage of the latest equipment and leave the WBR for another time if needed.

[hutchibk]

I hadn't sought that out yet because up until yesterday we were leaning towards Linac targeted rads on the 3 spots only. I was supposed to start that yesteday afternoon... but then yesterday morning the med onc and rads onc reviewed again and both had started leaning more toward WBR again late last week after seeing my PET from last Weds...

So I told them yesterday that I wasn't going to be there for WBR in the afternoon, I had a lot more questions that needed answering and needed to do alot more research. I plan to go to MD Anderson in the next couple of weeks to see what their plan would be. I don't want to do WBR right now, I want to try the wack-a-mole method first. LOL