Tarceva Working, but situation hopeless??

I started a discussion recently regarding brain mets and Stage IV NSCLC which my husband has. I had a lot of amunition when we saw my husband's onc yesterday. (Thank you!)
What I need to know is do we give up or get a second opnion? Is my husband too old to be helped?
When we arrived, the onc sat my husband on the examining table, clutched my husband's knee and announced that my husband only has six months to live. Or it could be only weeks. I don't need to tell anyone here how devastated we were.
Then the onc turned to me and said, "I supposed you have a lot of questions." (I always do.)
We went through Gamma or CyberKnife for the mets, T790M, other chemotherapies and Pulsed Tarceva. He nixed everything except the Pulsed Tarceva--he'd never heard of that.
So at this point, my husband's Tarceva (150 mg) is still working. He has 6-9 mets (all small--largest is around 1CM). None of the mets are bulky; they are small and thin. He is EGFR positive. Aside from the cancer, he had an enlarged prostrate, Rosacea (under control) and high blood pressure. He is 76 years old and is more like 56. (I wouldn't lie to this group!)
We are going to see the radiation oncologist tomorrow to see about WBR-10 treatments-to make him more comfortable. He's actually not uncomfortable. He's had some confusion and is periodically irritable.
So that's it. Second opinion or get our affairs in order?
I don't think I could survive all of this without this group!
Thank you
glo

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17 replies. Join the discussion

What does your husband want to do?
Back him up 100%. If he isn't sure go for a 2nd or 3rd opinion until you are sure of your decisions.
Hugs.

ps. I do not think it is hopeless.

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Please discuss gamma knife with someone who specialises in that. I was able to get my mum's MRI assessed by gamma knife clinics by email.
6-7 mets are treatable depending on their location.
Ch

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We've been talking about it. I got a second opnion from MD Anderson when he was first diagnosed. I felt so much better when they agreed with the procedure scheduled for him.
Given the announcment that he only has six months to live, he is satisfied to get a second opinion. I just feel that the onc feels that any procedure beyond one to keep my husband comfortable is useless.
And thank you--I do not think this situation is hopeless either.
Hugs right back to you!
glo

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I don't think pulsed Tarceva has been used on brain mets, it's been tried for Leptomeningeal carcinomatosis, which is metastes to the spinal fluid and meninges of the brain. If you can get a quick second opinion with a radiation onc that does gamma knife, I would. Don't listen to that stupid doctor telling you he has only six months. I would've spoken up and asked him, "how do you know that." Other than the brain mets, how's he doing on Tarceva? Has his cancer progressed anywhere else? Let us know how he makes out and what you decide.
Take care, Judy

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He is doing well on his Tarceva. I haven't seen the scan this month (although I've asked for it), but I understand he has had addtional reductions.
He has mets to L2 and L4 on his spine, but they have been improving significantly.
He has been doing so well. He is tired sometimes from the Tarceva, has a mild rash and that's it. Seems awfully healthy to me to just give up.
Thanks for the information.
glo

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Good Morning Everybody!

Doctors forget how traumatic it is to hear those words. They just spit them out. That pain is with us for a very long time. I am sorry you and your husband are going through all this now. My prayers are with both of you.

What exactly is TARCEVA PULSE??

Marie

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Marie - Tarceva Pulse is where they take a high dose of Tarceva. If I understand it correctly, up to 600 mg but only once every few days and then take the 150 mg dose the other days. As Judy mentioned, it seems to help if a person is dx with cancerous spinal fluid.

Glo - I hope you will get a 2nd opinion for your husband. Ask the radiation onc why he can't be treated with Gamma Knife. If you don't like his answer, seek another radiation onc.

Becky

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Definitely get 2nd or 3rd opinion. This s not hopeless. Someone on this sight said she had 6 months and 4 years later she is still here.!!!!!! Don't give up!

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I empathise with you as my mother has been told she has 8-12 months left with us and has now been taken of Tarceva as it is no longer effective. They are doing one last belt of chemo however after the initial shock of the news (and it is devastating) I started looking around and emailing all I could. I found a clinical trial which is being run out of the hospital in NZ that she is being treated and have talked to the scientists that designed this who in turned passed me over to the head onc\researcher heading the trial. I emailed him who then got hold of my mums onc. I know this is clutching at straws and knew that eventually we would be hit with the bombshell but until we are told there is nothing left I will not give up trying to help her. The trial I hope she can get on is PR610 and is still open from what Ive read she ticks all the boxes as eligible and as she said to me there nothing to loose... I sure hope you can find a way.

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My husband and I saw the radiation oncologist today. As far as the onc is concerned, he feels that 10 sessions of WBR would be the place to start. I asked about GK, and he said that "zapping" 8 to 9 tumors could deliver the same side effects as WBR. He said that we don't know how many other tiny tumors are there, and hopefully the WBR would wipe out all of them.
The onc also said that my husband would loose his hair, possibly having hearing loss and pressure which could require tubes in the ears and cataracts. I don't think people who have GK face all of those side effects, do they?
When my husband asked him about longevity, the oncologist said that he hated that question, because there is no real accurate answer. My husband could have 4 months or 6 or a year. No one knows for sure. He did say that the on-going stress of the disease does weaken the body and makes it more difficult for the body to recover from treatments and set backs. But Bob, my husband, is doing well. And since the Tarceva continues to work, that could help him live longer.
He said that he feels that keeping the immune system strong is vital.
Bob said he's ready to go for it. After my first experience with MD Anderson, I know that it would take at least a couple of weeks to get a response from them on the second opnion, and I don't think Bob will wait that long. It is not my body, but he is my life and I want him to feel that he is doing the best for himself. Soooo I will keep reading up on WBR vs GK.
Thank you everyone for your input, your positive thoughts and wisdom.
I'll let you know how things are going.
glo

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My husband gets his head frame made on Monday and a specialized CT for the radiation. He will get 10 low dose treatments. He'll start the radiation on Tuesday. They said after one or two weeks, all of his hair will fall out in 24 to 36 hours. That seems odd.
I spoke to a person at MD Anderson and they said to sent all the info down to them 21 days after he finishes his radiation. I want to make sure we do what is best for him after the radiation. I know he will stay on the Tarceva, but I'm hoping there is some other form of treatment to protect his brain.
I will let you all know how it is going.
You are the best. Thank you.
glo

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glo,

BTW, I remember someone here saying they had been in a trial that had WBR but protected the hippocampus part of the brain. Her memory sounded fine.

If the timeframe is a year or so and the frontrunner problem will become somewhere else after treatment, then the WBR might last him the rest of his life, whereas a targeted radiation might require more treatment every few months until it gets out of hand.

BTW, I think I remember something about how Tarceva makes the cancer more sensitive to radiation. I heard it from Dr. Weiss on cancergrace.org

Best hopes

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Craig
It is so good to hear from you. I always value your advice so much.
I asked the radiation oncologist about protecting the hippocampus and the brain stem. He said they don't do that. I wish I had thought to ask if they don't do it because they can't or because it wouldn't be appropriate for my husband. I think I'll ask again tomorrow.
I'm sorry, but I didn't understand what you meant by, "If the timeframe is a year or so and the front runner problem will become somewhere else after treatment. . ."
Bob has been on Tarceva (150) since March 2012 and has had positive results. As his onc said, Bob is doing fine from the neck down.
I was feeling pretty positive about the WBR until I read more info today. Some of the side effects are terribly frightening. I'm hoping the material I was reading was old and they've improved the WBR. They said he would get 10 treatments and the radiation level would be low. He has 8 to 9 small mets scattered about--that's why they wanted to do WBR rather than Gammaknife.
Once again, Craig, thank you for you input. I hope you are doing well.
glo

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I just posted a link to cancergrace.org and what Craig is talking about protecting the hippocampus and the brain stem. I'll see if I can find it. Take care, Judy

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Here it is! Take care, Judy
http://cancergrace.org/radiation/2012/02/24/refining-wbrt/

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Judy -- nice citation!

glo --

What I was saying was a hypothetical situation that doesn't sound like it applies to your husband since you said he's doing fine except for the brain mets. In contrast, if a person's body was so badly affected by cancer that they were expected to survive only, say, a year, then a treatment that rids the brain of symptomatic mets for longer than that time might be something to consider if there are more than a few brain mets. The preference might differ for a 4 year timeframe vs. 1 year vs 6 mo.

Overall, I think the main considerations are:
(1) effectiveness (and how much effectiveness you need),
(2) duration,
(3) side effects, and
(4) options for recurrences during remaining lifetime:

re: (1) I was told by one of my oncologists that radiation, at least the 1st time, is usually pretty effective, e.g., 80% of the time. Not much you can do about that, except that maybe certain pre-treatment drugs (and Tarceva?) might help.

re: (2) Targeted radiation only addresses mets large enough for your doctors to see and target, so there's a chance other small undetectable mets could grow measureable after a few weeks or months. WBR, if it works, might "clear the field" so it might take longer for new mets to arise.

(If there will also be a switch to a drug that could shrink brain mets, a short duration before regrowth might suffice. The only example I can think of, though, is from Xalkori to a 2nd gen ALK drug, if the trial results show the latter is reliable for brain mets.)

I do remember someone here reporting using targeted radiation repeatedly on many mets and I think they were eventually under control, but I expect most docs will recommend WBR for more than 5 mets. The research is starting show, though, that targeting several mets is an option (see citations in part 1b of this):
https://www.inspire.com/groups/lung-cancer-survivors/discussion/brain-mets- while-taking-tarceva/#cmnt_3537770
(Note: GRN1005 has been discontinued, so that's no longer an experimental drug option.)

re: (3) I assume there is still a risk of bad side effects from WBR, and a range of how severe they could be from very mild to very significant. You can ask your radiation oncologist for the % odds of bad, impairing side effects for WBR and for targeted radiation.

(My impression based on people in the forum is that bad impairments sometimes happen, but it's not the majority of the time.)

(4) Cumulative limits on radiation to any one place make it worth asking the doctor what options would be possible if brain mets returned many months or couple of years after treatment. I think with targeted radiation, it could be repeated on new mets, but WBR limits options. (I could be wrong, but I think of WBR as a one-time wildcard, maybe a 2nd time at a less-effective dose.)

There might also be other considerations that only your doctors know to consider.

If you're looking for a rule-of-thumb guideline based on a review of research, then this might be useful:
http://jco.ascopubs.org/content/31/1/11

I guess it isn't possible to precisely predict the consequences of any choice to an individual even if you knew the statistical %odds. I think I have heard in this forum anecdotes of WBR causing bad impairments, of targeted radiation of few mets that returned as dozens of small mets months later, of WBR without recurrence for years, and of targeted treatments on a number of mets as they arose until gone without recurrence, so I guess any outcome is possible.

In my own case, I might prefer targeted radiation to deal with just a few brain mets even if meant repeating it every 4 months, but I'd choose WBR if the circumstances warranted my playing that wildcard, esp. with a hippocampus sparing.

I don't think I'd be happy with a "we don't do that" answer to the hippocampus protection question. That would make me think they think it might be a valid option that other experts would do. So I'd want to know what one of those other experts would say, too, maybe at one of the locations running this trial, if there were time:
http://clinicaltrials.gov/show/NCT01227954
You might call one of those trial locations and ask if they offer hippocampus sparing WBR outside the trial of if that's too experimental.

This marketing article mentions a WBR variation with both hippocampal avoidance and a boost at the mets (i.e., both WBR with hippocampal sparing + targeted radiation at once):
http://www.utsouthwestern.edu/UTSW/staticFile/org/Medical_Services/Radiatio n_Oncology/target-spring2012.pdf
and this
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350212/
and I think the trial in Dallas is this:
http://www.clinicaltrials.gov/ct2/show/NCT01414738
And here is a case report of WBR with hippocampus sparing and integrated mets boost . . . repeated three times (i.e., I didn't think WBR could be done 3 times, so I'm impressed):
http://www.ncbi.nlm.nih.gov/pubmed/22236670

(I would guess that hippocampus sparing might not be wise if there are any brain mets near that part of the brain, but you can ask an expert about that.)

P.S. -- I think it might have been EGFR status, not the Tarceva, that might make the cancer cells more sensitive to radiation, per
http://www.ncbi.nlm.nih.gov/pubmed/23110940

All just my personal (and conflicted) thoughts, not a professional opinion.

Best hopes,

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Well, Craig, you have kept me pretty busy all day! Whew, so much to try and understand. I've run between not wanting my husband to have WBRT and thinking it is his only option. I do believe at this point it is the best alternative for him. I would like to find a hospital which has a method of protecting the hippocampus. I've got a call into MD Anderson to see if they are practicing that procedure. Plus I've set up plans to have the MRI after the WBRT to be sent to MD Anderson for review. If there are other things to be done, I certainly like to find out what they are.
As always, thank you very much. You are such an incredible source of information. It would take a miracle for me to find all of this knowledge on my own.
And many thanks to everyone who has participated in this group discussion. I may start another discussion to reach out to people who have had WBRT. Every bit of knowlege helps along this roller coaster ride.
Thanks
glo

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