Add me to the brain mets list
 

Hi Ladies,
It's been a while since I've posted, I usually lurk though. But now I find it's time to write since last week I was dx with those damn brain mets, and have already started WBR (3 down, 11 to go) and of course steroids. I have too many mets (11 or so, the largest is on my brain stem of about 2 cm with some edema) to do focal treatment at this point. If it recurrs in only a couple spots, that will be an option, but if not...

I had not had a brain MRI for a few years, have been advised to wait until I had symptoms like headache that wouldn't go away even with aspirin, which never happened. Maybe I shouldn't have waited! Oh well. But we found it in a PET scan, it showed only a spot, obviously the MRI gave a different picture. The PET also showed progression in my spine and chest lymph nodes.

I had been all set and excited to get into the expanded access T-DM1 trial in Fairfax, Va, hence the PET scan. The trial is still an option for me once the brain mets are treated (have to wait 30 days after) and assuming I don't have to stay on steroids long-term. I will be meeting with the onc soon to discuss any interim chemo.

I knew at some point I'd have to deal with this, I just didn't think it would be so soon (it'll be 6 years next month since my original dx).

Hang in there, friends, one moment, one day at a time!
Peace,

Re: Add me to the brain mets list
 

Hi Liz, sorry you are going through this. I see you had tyverb, thought that is supposed to prevent brain mets. Hope the treatment works for you, this stage iv is so crappy, there is always something new cropping up just when you think you have seen the worst. Best wishes to you. Hope you get to NED soon.

Re: Add me to the brain mets list
 

Liz - So many people on this site with new dx of brain met right now. I wish it was zero. I'm glad you are already having tx and that after the wbr you'll be in the clear. I hope you can get in the tdm1 trial soon. It seems to work wonderfully for so many people. Wishing you all the best for a great outcome. Pam

Re: Add me to the brain mets list
 

Oh Liz,
I am so sorry you are joining my sucky club. My positive thoughts and prayers go out to you. I hope you feel my big hug!!
If there's anything that I learn through this journey, I will share it with you.

Re: Add me to the brain mets list
 

Oh Liz, you and Kavy and Kris are all reminders to all of us NOT to wait for symptoms and to ask for or DEMAND that annual brain MRI!. Keeping you in my thoughts and prayers for successful treatment on this setback, and that soon all this will be behind you!.

Re: Add me to the brain mets list
 

Liz, I am so sad you have these new mets and hope you will soon be finished with WBR and back on the T-DM1 trial! What's going on here with, as you said, "damn brain mets" hitting so many sisters? Is it because we can work on the other mets because they come first? Liz, you are right, one day at at time. I am with you in thoughts. Michka

Re: Add me to the brain mets list
 

Hi Liz, I am so sorry that this had to happen. I guess that it's a part of our life that we cannot control. We have to deal with it. I hope that the treatment plan they are going to use will get rid of them quickly and then you can go on the T-DM1. Best wishes ! Mary L

Re: Add me to the brain mets list
 

Hi Liz,
I am so sorry you are faced with this. I hope the WBR does away with them.

Maybe we should all be asking for brain MRIs. I have not had one done and I know first hand how tumors in the brain can go undetected. My first husband (of 35 years) died with a glioblastoma that was 10 cm in size when he began having symptoms. It was in the left frontal lobe which I was told was the "silent" part of the brain and therefore, no symptoms.

I think I will ask for one when I go back in June for my check up.

Sandra

Re: Add me to the brain mets list
 

Liz,

I'm so sorry to hear that the cancer progressed before you got into the trial you wanted.

I so hope that you do well with the treatment you are on.

in my prayers, 'lizbeth

Re: Add me to the brain mets list
 

Aw, Liz...I am heartsick that you too have to deal with mets to the brain. I remember once at a conference Joe (our webmaster) telling me that 30% of women with metastatic Her 2 will get mets to the brain.
I was researching some study results for Kris and thought you too might be interested in these:

http://www.medicalnewstoday.com/articles/91941.php

http://healthreason.com/2010/09/27/h...mab-herceptin/

Sometimes a little knowledge is not a good thing; but I think in the long run knowledge is power.
Hang in with us, keep us posted on your progress...and as you said one moment...one day at a time.....
Love Kim from CT

Re: Add me to the brain mets list
 

I ECHO SHEILA 100%. My OLD onc used to say there was no need for a brain scan. Thank goodness I switched docs and she ordered a baseline because at my baseline scan I already had a freakin' met. Sending you hugs and strength to get thru the WBR and get on the TDM1.

Re: Add me to the brain mets list
 

Liz,

Sorry to hear about the brain mets.

With Tykerb and radiation, those bugers will be zapped to extinction in no time.

There is a trial going on using both Tykerb and Herceptin at the same time. Since Tykerb is mainly used for brain mets (because its smaller molecule size enables it to penetrate the blood-brain barrier) and Herceptin is the gold standard for treating Her2 breast cancer, I have high hope the combination will be approved soon.

Re: Add me to the brain mets list
 

Sorry to hear you have joined the brain mets club even though it is full of fine people. I have never had a brain scan (have been given the same advice as you) but will have to rectify that. Good luck with your treatment and I hope you get on to TDM-1 very soon.
Trish

Re: Add me to the brain mets list
 

Liz,
So sorry you have to go through this...my heart goes out to you. I will be keeping you in my thoughts and prayers that you do well and get this all behind you.

Chelee

Re: Add me to the brain mets list
 

I am so sorry to hear about the brain mets. A pet scan only picks up things below the top of the ears, so anything above that might escape pet imaging. Doing an MRI annually or every 18 months is a good idea. I hope WBR saps all your brain mets quickly, so you can move on to the next thing in your treatment list. Take good care of yourself.

Re: Add me to the brain mets list
 

Hi Liz,
sorry to hear the news, but WBR will deal with it. As Jackie said, you may want to restart Tykerb to help zap them all. I have experienced both WBR and Gamma knife; and posted my experience on other thread. If you can not find them and want me to share some experiences, I would be glad to do that. Grace

Re: Add me to the brain mets list
 

Liz,

I'm sorry to hear that you have a brain met. I also had one. My met was found on a second annual brain scan.

After my stage 2b cancer progressed to stage 4, I asked my onc whether I could have an annual brain MRI because women with HER2+ breast cancer have a higher probability of getting a brain met. She agreed.

The second scan was performed 16 months after the first, and it showed a brain met that had not yet caused symptoms.

Joan

Re: Add me to the brain mets list
 

Liz,
I just saw your thread. I'm so sorry to hear about your brain mets. I was also added to the brain mets list this month. I went for surgery that was cancelled, and now I will have Xknife for 3 tumors this Wednesday. I'm praying for you, Kris and myself that our treatments will work to zap these mets for good with no side effects.
Hang in there.
Hugs,
KarlaV.