Brain mets question

[Susan2]

What is the maximum number of tumors that can be treated with the gamma knife? I am asymptomatic with 7 tumors (largest is 6mm). They really want to do WBR, but I want to be sure that I'm not overlooking something. I've seen 3, 5 and no limit. What are your thoughts?

Thanks. This is scary stuff!

[jojo]

Gamma knife could be done many times as long as the target(s) don't repeat in the same spots. Gamma could target the same position maybe, just MAYBE, twice. But that would put edema at risk. Repeat gamma almost happened in my situation, but instead they decided on a craniotomy. Sure enough, the lesion that regrew in the same place turned out to be malignant. :-(

[pattyz]

Susan,

My second recurrance of brain mets indicated 14 lesions. That was six mos after I had had the first two treated focally.

Since I was also nearly asymptomatic and largest met was 11mm, I was able to have these 14 treated in a series.

I had SRS to four tumors, treating the largest and most dangerously placed.

Then another SRS to an additional four as they grew a bit, several months later.

Finally, was able to have CyberKnife (new facility locally) to treat the final six tumors. This was done in two sessions two days apart, a few months post second SRS.

I am now in a position where my latest (3rd) recurrance of brain mets was determined to be too dangerous to continue focalized rads. Each session of rads DO deliver radiation in a pathway, tho' in small amounts. However, since repeated sessions CROSS paths, it is a cummulative dosage.

I hope that answers your question :o) I FOUGHT to proceed this way, but my med onc was supportive, atleast.

best wishes,
pattyz

[al from Canada]

Dear Susan,
My opinion: if you have 7 mets, I would consider the cancer in the brain systemic. The only treatment for that is WBR.

I would look into getting into the allos trial http://www.allos.com/ because the response rate is something like 50% higher. As well, the biggest side effect concern from WBR is collateral damage to the rest of the brain. There are a lot of research results indicating that taking a drug such as arecept or memantine will compensate for that.

I would not take any chances with that number of mets and go for the WBR.

Good luck,
Al

[pattyz]

Al,
sorry to disagree, but my personal experience denies your opinion. As well as a few medical studies done show that there are effective options for brain mets, other than WBR, under certain conditions.

warmest regards,
pattyz

[al from Canada]

I agree with Patty,

You are a true inspiration to all women with brain mets. You never know, as you are well aware, if the decision you make is the right one, but we have to follow our best instincts.

Good luck,
Al

[Susan2]

Thanks for your advice. I met with the radiation oncologist. While he says that the standard of care is WBR, he is willing to consider the gamma knife. He was saying that the latest research tends to indicate that the total volume of mets is more important than the total number of mets. Fortunately, because of the size of the mets, the total volume is fairly low.

For various reasons, I had a CT scan instead of MRI. However, he won't proceed without the MRI. Of course he says that often the MRI shows lesions that don't show on the CT scan. So the number count could go up. A truly scary thought. Based on various postings here, I decided to get a second opinion from Dr. Keith Black at Cedars-Sinai - still waiting to hear back to see if I can get an appointment.

[pattyz]

2nd opinion: Sounds like an excellent plan, Susan.


The MRi done prior to any type of rads for brain mets is more specific, ie. using triple contrast and much smaller 'slices' of pics. This is the one that often shows more than the 'regular' MRi, and did in my case.

HOWEVER, if it does show more, they will be of small size and should not add too much to your total volume.

No matter what treatment plan you choose, it is ALL scary with brain mets.... but I have found that once again, most of my fears were unnecessary.

With your brain mets being small, I hope and do think, this will be what you find, too...

more good wishes,
pattyz

[Susan2]

Thank you for your support and sharing your experience. I just can't believe that I'm here. I thought that passing my 5 year anniversary recurrence free was cause for celebration. However, just celebrated a bit too soon. However, knowing that others like you did it and I can do it too. Again, thank you.

[Susan2]

Well, I had my MRI and there were a few more - very small, but there, nonetheless. Now, the dr. is really pushing wbr. However, he is willing to do smaller doses over a longer period of time to try to minimize damage. I am so torn.

I was hoping to get a 2nd opinion from Dr. Keith Black at Cedars-Sinai based on several recommendations from people on this website. However, I'm not sure that will happen. Today is the 5th business day from when I first contacted his office and I don't have a determination if he will even see me - much less an appt. time. My dr. here wants to start wbr on Monday. He says that right now I have no edema, but that could change at anytime.

This is so frustrating. Thanks for being there.

[al from Canada]

Edema can be treated, keep calling Dr. Black or show-up on his door step. Proper ediquate ends when your life is at stake. I remember Ginger Emprey , a 10 year survivor who almost died, recounting that she literally almost broke down a door, jaundiced and all, to get herceptin. If she hadn't done that.....we know the answer.

I'm sure that most of us here know that cancer is only half the battle.

Good luck,
Al

[pattyz]

Susan,

I know how hard this is, the decisions, the FIGHT to get the treatment you really want, the uncertainties...

These questions are important to what tx you have:

Are you symptomatic from your brain mets? To what degree?

Do you have extracranial mets? To what degree?

How is your overall health and normal life functions?

IF you are minimally symptomatic, have minimal extracrainial mets/none/stable, and have a good 'performance status' in day to day activities, you are most definitely a candidate to get a series of focalized treatments for your brain mets.

However, if you are not up to the fight this will require, or are too fearful of NOT doing WBR, then you have to try to find some peace with the WBR tx's. Ultimately, the confidence in whatever route you go is what's important.

Should you develope edema, Decadron will control that. And if that happens, we'll do posts on the horrors of Decadron again! But, it is VERY effective drug for symptom control of brain mets.

Still here for you...
hugs,
pattyz

[Susan2]

Thanks for your thoughts and support. I've got to decide if I am nervy enough to fly across the country to show up on his doorstep without an appt. I would like to think that I'm brave enough - I'm just not sure.

I have no symptoms other than no reflexes in my knees. I play tennis and I walk regularly - so the lack of reflexes has had no impact.

I had a recurrence in a pectoral lymph node and what were thought to be lung mets last fall (they were so small that I refused a surgical biopsy). 6 months of Navelbine / Herceptin later, I was NED at my last PET scan. I continue on Herceptin.

The dr. is pushing hard for wbr because 1) at original diagnosis 6 years ago, I had more than 10 lymph nodes positive and 2) it apparently metasized to the lungs. He's concerned that because of the multiple mets there are more that are not visible on the scan. He's concerned that I will have an immediate recurrence.

Another option that he has raised is to drop the dose of the wbr and spread it out over a longer period of time to reduce the potential for damage. Conceptually, I like that idea. However, it seems to me that the cumalative damage is still there.

We are also exploring the various drugs to protect the brain during radiation. Al, thanks for the names. I'm continuing to research them and talking with the dr.

Thank you again for your support.
Susan

[pattyz]

Susan,

yes, the longer course with lower dosage at a time would be the way I'd have gone, hoping to get that drug in conjunction (brain fart leaves name a mystery...) to help with effectiveness. I'd also be looking at adding a low dose of Temodar which has been done in a small study with positive results.

yup, the concern is for quick recurrance. And that was true for me. But I was willing to risk it and then deal with it as it ocurred.

It sounds like you're in good shape! I think that will be to your advantage no matter what course of tx you pursue.

You're very welcome... When I was first dx'd with brain mets I spent a lot of time looking for others who could share their experience, since the documented numbers looked bleak. But their were few at the time; not so anymore.
xoxopatty

[Annemarie]

Hi Susan,
Tomorrow is my 6 year bc anniversary! I was diagnosed at 32 with Stage 3b er/pr positive and her2 +++. I have had single lesion brain mets 3 times since initial diagnosis. I will give you "my" best advise and that is to get the WBR. I did not do things correctly. I kick myself for not listening to my doctor. I even called the ACS and they faxed me studies indicating that WBR was the appropriate treatment. I also went to a teaching facility and the head of oncology told me the same. I am so stubborn and I punished myself for a long time by not following all of the doctors I consulted with advise.

The second brain met was so close to the spinal cord I had to have a spinal tap and they were almost certain it went into the spinal fluid. Well that was not the case -thank god. I did have RT to the brain half and half (which is not the way) plus Temodar. My brain function is almost normal. I suffer a little bit from memory loss but everything is pretty much normal. My hair is not as thick but I have my life. Everyone is different but I personally think I could have saved myself a lot of hard ache if I was treated as recommended the first time. Just my opinion based on all I have been through. I respect others right to choose other options. And whatever path you take I will say a prayer for you!! I go for a brain MRI tomorrow!!

[Susan2]

Thanks for your advice. I'm going to meet with Dr. Black on Tuesday. Right now, I'm leaning toward the low dose wbr with Temador. Of course, I keep changing my mind and second guessing myself.

Annemarie, good luck with your MRI. My prayers are with you that you will have wonderful news.

Take care,
Susan

[pattyz]

Susan re: PM! Awesome name for rad onc, how can you go wrong with the 'white angel' ?! And really am glad to hear your faith in him.

Am also glad for your appt. with Dr. Black. (Um...what did I just say? black/white? weird)

If nothing else, his concurrance may help you 'settle in' emotionally on the WBR... And he may pull a rabbit out regarding additional meds or thoughts on dosage and follow-up tx.

Your 'history' sounded on the good prognosis side. With everything surrounding a brain mets dx and tx, these positives are important when trying to get our heads around it. No pun intended...

I think it's wonderful you've treated yourself to such exciting new experiences for you anniversaries. Very cool.

Safe trip! Will be watching for update posts. Continued good thoughts,
hugs,
pattyz

[al from Canada]

Susan,

Congrats on breaking down the door...and I think your plan with WBR + Temodar makes sense. You may want to look into aricep or memantine to fight the cognitive decline which may or may not happen. There has been some great results from this mix and as I said earlier, memantine is also a glutamate antagonist, which may have some anti-tumor potential.
Good luck,
Al

[Annemarie]

Hi,
I had a good brain MRI today!! As most of you know I was diagnosed 6 years ago today and have had brain mets 3X all single lesions and NED else where. I am so happy to be alive!! I currently take Temodar to prevent disease and Herceptin. Good luck to you Susan. You know that everyone supports your discissions what ever way you go. Good luck and you will be in my prayers!
Annemarie

[al from Canada]

That's great Annemarie! I hope ASCO will have some more news for survivors like you, patty and susan.

Keep saying no!
Al

[Susan2]

Annemarie, that is awesome news. I am so happy for you.

Al, I couldn't be brave enough to fly across the country without an appointment. However, I could be extremely persistent - or is that just a nag? And hopefully, it will pay off.

I met again today with the radiation onc. We discussed the arecept. We will probably add that in to the mix as well.

I really appreciate all of you sharing your knowledge and insights.

I'll keep you posted.
Susan

[Susan2]

I had my 2nd opinion yesterday. He agreed that wbr was the way to go. On the one hand, I'm glad that the drs. are in agreement. But on the other hand, I really would like some options. One of the good things that he said was that as a long term survivor, I currently had a good QoL and that should continue after wbr. I had never had a dr. categorize me as a long-term survivor. That was pretty cool.

I start wbr tomorrow. I'm going to do 4 1/2 weeks. That's longer than the standard, but I'm getting a smaller daily dose. The premise is that will give me time to heal on a daily basis and hopefully reduce or eliminate the long-term damage. I'm also going to do a low-dose Temador.
My radiation oncologist talked to the lead researcher on the arecept trials. He felt that the lower doses would provide more protection than the arecept for me. Then, the arecept could always be added later if necessary.

Thanks for all of your advice and support.
Susan

[pattyz]

Susan,

This sounds to me like he is looking at you as a WHOLE person, which to me counts for a lot!

Yes, that is what I understand about the longer lower dose of WBR; it allows more 'recovery' thus lessening damage. And I'm so glad to hear you'll be getting the Temodar. Am hoping BIG TIME you will respond to it as I (and others) have.

One thing: I do believe 'they' all tend to downplay the sides from WBR. I think that is so wrong. So, I will say to you, "Expect the best but prepare for the worst". I hope you take that the way I intend, as this is difficult to express in words...

If there are ways that you know of giving yourself comfort, stock up. As in special foods, books, low energy 'projects'... like that.

Very best wishes,
with hugs,
pattyz

[Susan2]

Did you find the fatigue from wbr to be worse than fatigue from radiation to other sites? I'm hoping that the lower daily dose will reduce fatigue and hair loss, but of course, I have no way of knowing. I am signed me up for a half marathon in a few months, so I guess I need to check with the dr. about getting his ok for my training.Thanks for your support and don't worry about how you say things to me. I try to interpret everything positively. At this point in my life, I tend to be a tad Pollyannish. It can get on other people's nerves, but it helps me.

[pattyz]

Susan,

Please forgive me. I have not had WBR... but my comments come from reading the experiences of many who have. They are surprised by the total fatigue and length of recovery. Yet, this is not the experience of ALL.

And, I am hoping and reasoning as you. That with your schedule, the effects will not be as severe. I just HATE to be surprised, unless it is a good surprise! So, I am projecting that onto you I guess...

We each have to find our own personal way/s of coping with all our crap. Wear your Pollyanna hat if it helps YOU!!! But, from your posts, it sounds to me as tho' you take it off when the 'need to know' file appears. A pretty good combination, imho.

I think having fun stuff to look forward too is energizing. Hope you can participate in your marathon at whatever level you're able.

hugs, (she who doesn't know what Pollyanna's hat looks like anymore...)
pattyz
xoxo

[Annemarie]

Thanks Al. First I have to say I am in awe of you. What a wonderful man you are to post not only in your wife's behalf and memory but also to help others. Helping others is such a wonderful thing. I mean this with full sincerity.

Regarding the use of Temodar for brain mets it is actually not the best but all we really have other than WBR. Temodar works pretty well for primary brain tumors such as glioblastoma. Off the top of my head I think the reduction rate was 34% and for brain mets 11%. Everything helps. My oncologist today said he want me to d/c the Herceptin since I have been on it for 1.5 yrs and NED. I am not going to go off of it until Tykerb becomes available. Any thoughts?

[al from Canada]

Annemarie,

Thanks for the kind words. I have a number reasons I post: I feel I have family here, it helps me heal, I think I can still contribute and of course the big one: I have 2 daughters who have a one in eight chance of getting this disease in their life time. If the unthinkable ever happened, believe me; I will be prepared.

In terms of other options, there are other "small molecule" drugs that do cross the blood brain barrier. Two are Iressa and Tarceva. These drugs are HER1 inhibitors which represent 1/2 of lapatinib's action and since you are HER2 + there is a strong chance you are also HER1+. There is another drug under development, pertuzumab, which is a HER1,2 & 3 inhibitor but I am unsure of the molecular size.

Al