50 brain mets...any hope?

smspaz3
  • By smspaz3 · January 30, 2013 at 3:24 pm · 74 replies
  • In Non-small cell lung cancer - Stage IV
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9 months on the wonder drug Xalkori did such great things for my lung, but did not protect the brain. I found out today that I have 50 brain mets...or is that when he stopped counting? I have absolutely no idea what I am going to do. The side effects of WBR sounded horrifying and I was told it wouldn't be able to wipe them all out. The radiation oncologist was in favor of me talking to someone at Yale about Gamma Knife, but in the end it will be the brain that ends my life, not the lung. I don't know if brain mets count as progression, but I am going to talk to someone regarding LDK. I feel like my life has become a horror show. Does anyone have anything that might help my situation?

Sue

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74 replies    Reply

Denzie

Oh, Sue. So sorry about this latest twist. My mom had WBR with some awful side effects which, as a nurse, she knew were coming. She made a choice to fight for her life and afterward said she had no regrets. It's not an easy choice to make and I pray that you find peace with your decision no matter which choice you make.

Please let us know what the doctors at Yale say. Sending strong, positive energy and strength your way.

linnea

Sue, I have several friends who have had 40 or more mets---it sounds horrifying, but is not uncommon. One of those friends is currently living with 40 that are slow growing and not being treated at all---so there are many possible scenarios.

Also, I can't speak from personal experience but I know quite a few people who have had WBR and got through it with intellect and quality of life intact. I can tell you that in your situation I would not hesitate to undergo WBR, but would also look into switching to another ALK inhibitor with more potential to cross the blood brain barrier.

I feel for you and understand why it feels like a horror show. Continue to explore your options and know that we are here for you.

with love, Linnea

MARIA59

I am so sorry you have to go through this. One of
my friends chose Gamma knife when she was
advised to have WBR. She ultimately had WBR
after the Gamma. Whatever you decide just
know I am going to send positive thoughts and
prayers your way.
MARIA

cards7up

Sue, so sorry to hear of your progression. I'd think with that many mets, that GK would be off the table. But see what Yale has too say. There may be many, many teeny tiny ones. Wishing you the best.
Take care, Judy

Prayformomma

Yale is the best, they will help you.

smspaz3
  • By smspaz3
  • Reply 3757001 · In reply to 3756849 by linnea
  • January 30, 2013 at 5:31 pm
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I've been talking with Shasha57 (Sharon) about LDK and Ariad as a possible second choice. They have Ariad at Yale and are going to be opening LDK for those that are crizotinib resistance very soon. I hope to be in there talking to someone in the next few days.

linnea
  • By linnea
  • Reply 3757056 · In reply to 3757001 by smspaz3
  • January 30, 2013 at 5:46 pm
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Sue, I believe the LDK378 trial at MGH in Boston is still enrolling----another consideration.

Linnea

malcontent

Sue, I don't have specific advice--it seems like collecting info on as many options as possible is a good step. Mostly, I wanted to acknowledge how frightened you must feel and that your Inspire friends are cheering you on as you work through this bump in your treatment road.
Margie

Denzie

Thanks Sue for starting this conversation. I'm learning things that make me feel better.

AxelJen95

HI Sue:

We are so sorry you have to deal with this. LDK378 is also offered at Dana farber. I think they just became a site in the last 2 months.

Jen & Axel

Didoo

So sorry to hear about your brain mets. When my husband was diagnosed, he had no sypmtoms other than severe head pain. After much testing, he was diagnosed stage 4 lung cancer with mets to the brain. The doctors described his brain mets as if someone had spilt milk through his brain. It was everywhere. He did 10 rounds of WBR. His first scan after WBR showed it had cleared! He has just had his second scan, almost 6 months since treatment and results still show nothing. We have a scan for his lungs mid Feb so we have our fingers crossed for good results there too. If you have any questions please don't hesitate to ask. More than happy to discuss his experience thus far.

Good luck with whatever you decide to do x

sharilou

Sue,
There is a recent series @ cancergrace.org on radiation. I'm starting to watch it as my LC has also spread all over the brain, 5 different areas. What I learned so far about WBR is that they can keep the dose low which affects the cancer cells but the normal cells can recover.

Let me know what they say when you go to Yale. It's good you are getting a second opinion to help with during this difficult time.

Maybe they can add something like Tarceva to your regimen as I heard there are treatments that cross the BBB.

Hoping for the best for you,
~S

eyeontheball

http://www.hindawi.com/journals/jo/2010/198208/

This link talks about covering up the area of the brain during WBR to minimize cognitive problems.

If this link doesn't get you there for some reason, simply google
"Cognitive Sparing during whole brain radiation" and it's the first link that pops up.

Ask your Docs about small molecule Chemo's that cross the blood barrier.

They will probably put you on DEX steroids, so ask about "step-down" appproach, probably starting at 4 mg, then 3, then, 2, then staying on 1 .

Keep us posted; we care!

debbie
eyeontheball

Ddoes

I am glad you are getting a second opinion. I have no experience with mets to the brain (so far...) but I just wanted you to know that I'm praying for you and am sure that you will be able to make the right decision about treatment.
Hang in there.
Hugs,
Darby

cards7up

Here's another link from GRACE worth reading so you'll have more info. Take care, Judy
http://cancergrace.org/radiation/2012/02/24/refining-wbrt/

MichiganLynn (Inactive)
  • By MichiganLynn (Inactive)
  • Reply 3759268
  • January 31, 2013 at 10:27 am
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Sue,

I am SO sorry you are dealing with this. When you posted your symptoms we all thought they were sinus related. This is just not fair. I do not have advice but I do know that sometimes Alimta crosses the blood brain barrier if your cancer cells accept it. I wonder if they can treat the mets then give you that? This should not be happening to ladies our age. Or anyone......you know what I mean though.

Hugs, Amanda

sandye

I am so sorry to hear of the progression. So many things to consider. I will pray for you in your decision making. Linnea had some good comments. My scan will be this coming Monday to recheck after my CyberKnife 3 months ago. PET also. Keep us posted. Hugs!!
Sandra

Mysticwingz

Sue,

I can only imagine how you are feeling and I wish they would invent a way to reach thru the computer and give someone a hug. I would give you a great big one!

Jerilyn

jacaranda

My husband was offered WBR which we haven't had yet as we choose to do GammaKnife first - he had 7 spots. We were told that being younger that he would not likely get the significant cognitive effects that people complain about with WBR... it is apparently more common when your older to get those side effects... esp. over 60. We are okay with the plan that he may need WBR at some point and aren't too fearful based on that information. We were told that fatigue would be the biggest hurdle. I just came across this too the other day... might interest you:

https://www.astro.org/News-and-Media/News-Releases/2012/Memantine-delays-co gnitive-decline-in-brain-tumor-patients-who-receive-whole-brain-radiation-t herapy.aspx

GDavis9755

I almost hate to ask you this question. I think your answer could help some people.
Did you have the PCI procedure done in the beginning, or were you even able to have it done.
Again if this question is so personal don't answer and I'm sorry I even asked.
I do hope the treatment helps you and God bless you and take care of you during this period.

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