Adenocarcinoma w/ Brain Mets

tttw
  • By tttw · December 13, 2006 at 10:02 am · 8 replies
  • In Non-small cell lung cancer - General
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I found out yesterday that I have now moved into the dreaded Stage IV category. What are my options at this point? My brain has already received all the radiation it can take in February 2006 due to an unrelated non-malignant brain tumor (oligodendroglioma). I've pretty much accepted that I'm going to die in the near future, and I don't want to spend the rest of my life recovering from surgery or chemo side effects. Any ideas? Any educated guesses on how long I have to live and how much of that time will be quality time?

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8 replies   

Chanwit

Hey T cubed,
Not sure how long this has been going on but any chance you might qualify for Tarveca 150.
In some cases it has been showned to pass the BBB.
I guess the exotic gamma knife is not an option?
Here is just one possible link:
http://cms.clevelandclinic.org/cancer/body.cfm?id=98&referrer=google

Have you had any chemotherapy? It may not be as bad as you think if you keep yourself healthy in mind and body. Don't pass up that option. It could give you a lot more time.
Don't give up hope and belief.
Chanwit

brunobaby

My husband is in the same boat right now, having had whole brain radiation in September 2004 and stereotactic in November 2004. Last month they found 6 recurrent brain mets.

He's on Tarceva 150 mg. and is having a follow-up MRI on Dec. 27th. If the brain mets have improved, he stays on Tarceva. If not, there are other drugs that break the BBB and he will get cyberknife or other pinpoint radiation selectively.

How long does he have, or you? Who knows! As long as they keep coming up with things to fight it and you keep having the strength to fight.

--Melinda

J-me

I've heard that Tarceva crosses the blood brain barrier..Is this an option?

Prayers for you!!
GOD BLESS!
J-me

Jolene

Just read your post and I too am from Iowa, Keokuk County which is about 1.5 hrs southeast of Des Moines. I was curious as to where you are being treated? Iowa Methodist, University of Iowa
Have you had a second opinion? You said you have accepted that you were going to die in the near future. I would not give up so easily. You are young and although one has to be realistic, search for ideas and answers. Find out where in the U.S. has the highest success rate for treating brain tumors and have your records sent there for evaluation and opinions. Suffering is horrible and I am so sorry that you have this disease. Sometimes we have to go through pain before we can get better...don't rule out treatments that may offer you quality time. Prayers are with you.
Jolene

Don_M

Cyberknife or gamma knife can be given as a treatment even if you have had prior radiation in a lot of cases. There are some radiation oncologists who can answer your questions at:

http://www.cyberknifesupport.org/forum/default.aspx?c=4

In any case, I am sure you don't have to sit and wait until the cancer kills you. You still have treatment options, which is the same as having hope sit in your lap. I have had 2 full thoracotomies, 2 chemos, and 33 radiation treatments. It has not been devastating for me... well the part where I have only one lung is not too cool, but other than that, life is good. I am fully recovered from my surgeries and other treatments. I expect to outlive this disease. Even the time during my recovery and treatment was not that bad.

If you decide to do nothing and let the disease have it course, that is your decision and I am sure members will support you. I don’t think anyone can speak to how much time you will have or its quality. You could ask for whatever palliative care would maximize your quality of life. If I had made the decision for no more treatment and had brain mets, I would still want to have my brain mets controlled.

You have my best wishes.

Don M

TomC

There are options:
- Cyberknife or Gammaknife

- Topotekan - chemo that gets to the brain

- Temodar - chemo gets to brain

-SU011248 - Phase II trial (http://www.clinicaltrials.gov/ct/show/NCT00372775?order=1)

- Tarceva

- Avastin (breaks the BB barrier) Trials ongoing or starting

I've had whole brain rad (mets discovered after 2 rounds of avastin/alimta). Returned to Avastin (now on 8th round) despite some concern for brain bleeding. Mets were tiny so it wasa worthy risk.) BTW: I've been stage IV for 3 years!

You're not going anywhere any day soon if you explore and dig and get some opinions from a major cancer center like MD Anderson, Sloan-Kettering, MAyo etc.

DO NOT envision your demise just yet. many options left.

Move forward.

brunobaby

Tom, very encouraging to hear you're a 3-year survivor! My husband is a 31-month survivor. The meds you listed are the same ones the doctors at Mount Sinai and Sloan-Kettering recommended if the Tarceva doesn't do the trick.

--Melinda

bpolson

Yes, you do definitely have options as others here have mentioned. And there are currently a host of systemic treatment options that seem to penetrate the blood brain barrier. I have read as well that there are some that feel to much stock is given to the BBB. Since the cancer penetrated chemo can as well.

My wife started here chemo treatment two years ago with a standard carbo/taxol that was not intended to reach the brain. The hope was that here whole brain radiation would take care of the brain mets. About 6-8 months later we found that the chemo (which started out working) was no longer working and the brain mets where growing and spreading.

A few months later and a new doctor at the University of Minnesota open doors for a whole host of treatments. What has worked for my wife so far has been:

1) Tarceva - this drug seemed to work a miracle for while. Brain mets that were described as a "spray" and number more than a dozen visible practically disappeared in a few months. Her primary lung tumor and others shrunk as well. Unfortunately this stopped working for her.
2) Gamma-knife - she had this procedure 2x. Once they treated 1 lesion. Once they treated 3. Both were very successfull at shrinking and possibly stopping the area treated.

There are other drugs we've tried that have unfortunately not worked for my wife but have worked for others:

trial of erbitux/velcade
temodar
topotocan

There are others out there I am sure. My wife is currently on the Topotecan and is scanned next week to see if it's working. Hang in there!!! The side-effects of these drugs can be managed pretty well in most cases.

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