Tarceva and Brain Mets

Greetings to one of the greatest group of people in the world.

My husband has Stage IV Lung Cancer, and we discovered today he has mets to the brain. He's been on Tarceva for 10 months with success. He is EGFR positive. His mets before this have only been to the spine.
I e-mailed the onc this morning about my husband's intermittent, strange behavior. He got my huband in for a brain MRI along with his CT scan today. He called us a couple of hours later and said that Bob (my husband) has six small mets scattered around his brain. (it may be nine--that's what the radiologist said)
He said this was a bad sign. That we would have to discuss a lot of issues on Monday. Needless to say, I came to Inspire.

I'll take any info on all of this, but there are three things I'd like to know for sure:

1. Is the Tarceva BBB resistant? Is that why these mets have gone to the brain? Onc said that his CT scan was good again--more reduction.

2. Will Gamma Knife surgery work for this many mets?

3. Bob is 76 years old. If his onc says he needs to do WBR, will it damage his brain functions to a great degree?

Given how well he has been doing on Tarceva, this has been a devastating development.

I would appreciate prayers and help. I don't know what I would do without Inspire.
Thank you all.

Report post

27 replies. Join the discussion

I can't answer your questions but I can pray for BOB. And for you. I am sure you are so scared. There are many here who have had good luck getting these things treated.
I pray they come to answer your questions.
Julie JB

Report post

Thank you for your prayers. I am so grateful for the positive response I receive here. This group is such a blessing.
Thank you.

Report post

Tarceva is one of the few drugs that does cross the blood brain barrier. Is he on the 150 dose? If not, you may want to ask the onc to increase it to 150.

As to WBR, the research I have done on it says that there can be long term major side effects. I'm sure others on here will respond that have more experience with it.

I will be praying for your husband.

God Bless

Report post

I have been on 150 mg Tarceva for10 months, with very good results. Initially I had 3 brain mets - had WBR - only 5 sessions. Then in Dec 2012 one had started to grow again and 2 smaller new ones. Had gamma knife and Im good to go. The gamma knife is not the most pleasant experience. I would say the worst part of the radiation is the dexamethasone steroid and the side effects - makes you quite manic. I can honestly say I do not have any evidence of side effects - I work full time and lead a full and active life.
Wishing you all the best!

Report post

Sorry, I cannot answer your questions, but you and Bob are in my thoughts and prayers. I hope you get some answers.

Report post

You can also consider pulsed tarceva.

Report post

I am praying for you and Bob.

My husband's onc refuses refuses to order an MRI until there are symptoms. My husband had a Pancoast with T1, T2 and rib involvement and has been on Tarceva for 15 months. Latest CT scan showed only scar tissue. He is having vision issues in one eye, but the onc wants him to go to the eye dr first.

God bless us all,


Report post

Hi I had 17 brain mets and had them gamma knifed in one treatment. My stage 4 lung cancer was detected Dec 2012 and my gamma knife was Feb 9 2012. MRI still clear to this date.
I'd say do gamma knife.

Report post

I'll try on your questions.

1. Yes it appears he has developed resistance. (I do not know what the term BBB means).

2. Gamma knife may provide some temporary help. However, something is needed to stop the cancer process that is going to the brain, not simply eradicate the existing lesions. Sadly I would not look at radiation as a cure though it might be recommended to relieve symptoms, improve quality of life, and assist with chemotherapy.

3. The initial rule of medicine is first do no harm. One assumes the radiologist would not recommend it if there are substantial risks. If there are such risks, presumably he would discuss the potential benefits versus risks.

Some more issues (you haven't raised)

4. Has chemotherapy been tried. If Tarceva was the initial therapy and he wants to continue fighting, presumably Carboplatin or another chemotherapy drug would be recommended, perhaps together with radiation.

5. Alternatively, they may try to determine the source of resistance, probably by biopsy, and then have him consider a clinical trial with a new drug designed to address that. The T790M mutation is the primary sources of resistance, and if that were the culprit, a new anti- T790M drug could be tried.

6. Alternatively another anti EGFR drug such as Erbitux could be tried and some studies have recommended a combination of drugs. Regales, Dual targeting of EGFR can overcome a major drug resistance mutation in mouse models of EGFR mutant lung cancer, J Clin Invest. 2009 October 1; 119(10): 3000–3010, Sos, Chemogenomic Profiling Provides Insights into the Limited Activity of Irreversible EGFR Inhibitors in Tumor Cells Expressing the T790M EGFR Resistance Mutation,Cancer Res February 1, 2010 ("Combined treatment of T790M-mutant tumor cells with BIBW-2992 and the target of rapamycin inhibitor PI-103 led to synergistic induction of apoptosis cell death).

Report post

BBB is the blood brain barrier. Small molecule drugs, like Tarceva, can presumably cross over into the brain. (I wish Greg were still here; it could explain it).

I don't believe chemo can cross the barrier. Someone please correct me if I'm wrong.

Report post

My mother had 3 brain mets, and they thought that WBR was much more likely effective than gammaknife in someone with 3 or more brain mets, because there are likely to be other smaller brain mets. They told us that they usually do not see cognitive deterioration after a single round (five sessions) of WBR. They usually only see it in people who have had to have it done on multiple occasions.

Best wishes for your husband!

Report post

I would if it was me ask Onc to first try Pulsed Tarceva
see recent articles at GRACE


also google Pulsed Tarceva to find more info
best wishes

Report post

I only had one brain met, but my radiation oncologist told me that in his opinion Gamma or Cyber Knife are preferable to wbr because of side effects. He said that you can always do wbr later if necessary, but stereotactic radiation therapy can be used multiple times unless there's a particular reason it can't be done.
Good luck to you and your husband.


Report post

My husband just had 7 brain mets zapped by GammaKnife. We await the next scan to see where we are at then... for now all his symptoms of the mets have gone (morning vomiting, and nausea and extreme fatigue). We are waiting for mutation testing results to come back to see which path we take...? crizotinib if ALK or pulsed Tarceva.

Best wishes

Report post

Tarceva does cross the BBB (blood brain barrier), but so do a number of chemotherapy agents - and to an impressive degree in some cases.

The cognitive impairment resulting from WBRT (Whole Brain Radiation Therapy) seems to be worse in the case of the more elderly and it also detrimentally affects long-term survivors, according to some studies. Generally WBRT can only be done the once, as I understand it.

Report post

I have been taking Tarceva since Mar 2007 (stage 4 lung cancer) and all is good. I can't answer your questions but you have caused me to research it even more. I do wish you the best.

Report post

I think it is great that your husband has reduction on his latest CT scan with Tarceva treatment. I doubt he would be considered Tarceva resistant when he is showing reduction and doubt they will stop his Tarceva, maybe they will add something to it. Don't hesitate to get a second opinion from an oncologist at a site offering clinical trials. I have met 3 cutting edge oncologists that way and value their opinions.

My brain mets were discovered in November. My doctor said 2/3 of my new medicine (CO-1686), which is part of a clinical trial and similar to Tarceva, would get to the brain. He was just going to follow the brain mets with scans; I have no symptoms unlike your husband. I brought up gamma knife, so he ordered an MRI. It showed 5 mets in 5 different parts of my brain. I am waiting for my next CT scan in 6 weeks to see if the treatment keeps them stable before deciding what to do.

Wishing you the best during this difficult time. Please let me know what happens next.


Report post

Dear Glo,
My mother was dx with 3 brain mets febr. 2012. She did gamma knife but as they discovered more little mets, they treated 5 with GK and then also did WBRT. My mother was 75 (now 76). Gamma knife was not so nice but no pain. WBRT gave her some disturbs but I would say more like a slowing down of reaction rather than things she can't remember or do. Mets stopped growing for 9 months, now one of them is growing again although under Afatinib. As far as I understood even doctors don 't exactly know how the BBB works with chemio or other treatments... Good good good luck to Bob and all of you!

Report post

Wow. What a wonderful response. Thank you.
I wrote another response earlier, but forgot to post it and lost it.
Thanks to all of your wisdom and support, I don't feel so hopeless.
I have a LOT of questions for the doctor tomorrow and am anxious to find out where the tumors are, and if they can be removed. And, if so, then what? We don't want them to come back.
I'll let you know what else I find.
Thank you for everything.

Report post

I felt Like I was on a Rollercoaster. So Manic. No One understood. I was running around here talking to myself. starving. Driving everyone crazy. Had people asking and trlling me to shut up. High Anxity, short tempered. It was awful. My emphazema did seem better, I could breathe better. I started out 500Mg 4 tm a da for a long time. The nite before Chemo 5 at a time 2 tms during the nite. He cit it dowm to 3 tms a da and now 2 tms aday except when I have Chemo the its the 10 and if I froget or miss them.....no Chemo Now though since there lowered seems even harder to brearhe than before I was taking them. Plus I have a sisnis infection 2 wks now 2nd round antibiotics mri of the spot on my Brain 31st chest scan 1st Chemo 6th. and Im right now I just feel tired.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Photo of Dave Grant

The Lung Cancer Survivors Support Community has provided support for patients, caregivers, families and friends since 2006. We welcome over 600 new members every month in the fight against lung cancer.

ALK mutations and lung cancer

Join the discussion about ALK mutations and lung cancer

Things you can do

Discussion topics

Community leaders