leptominengial carcinomatosis - 1271552

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kempten
leptominengial carcinomatosis - 1271552

Hello,
I am very concerned that I might develop leptominengial carcinomatosis.
At the time of diagnosis I already had 9 brain metastases from a stage IV EGFR pos non small cell adenocarcinoma of the lung.
I was told that the brain mets where synchronous.
Tarceva got them down to 3 (visible on MRI ) mets , and these got treated a few weeks ago with SRS
I never had WBRT even though that was one possible and recommended treatment at the time.
We opted to give Tarceva a chance and it did reduce the visible mets quite nicely, but I also understand that there is a very good chance of microscopic metastases being present that do not show up on MRI.
I read that if you peek down a microscope during brain surgery you very often see microscopic disease along the blood vessels, that no imagine would be able to pick up ,

Question:
Should I get a spinal tap? I read that MRI does not always pick up the disease. Even the spinal tap can come back negative despite disease being present.
Or do I have no choice but to wait for neurologic symptoms to appear?
I just feel that with that many mets and no WBRT the likelihood of developing this dreaded complication is a real possibility, may be I already have it and no symptoms have developed yet?
What do the experts think?
Thanks' so much
Kempten

catdander
I am so happy to hear you've

I am so happy to hear you've done so well on tarceva with your brain mets! That's very good news. Oncologists wouldn't order a spinal tape for lepto if there are no signs of lepto, spinal tapes often don't show lepto even if it's there. No there's no good reason to have an invasive spinal tape. As a matter of fact I bet your doctors are very pleased to see you doing well.

Best of luck and I hope this can ease a bit of your stress.

Janine

kempten
Thank you for your answer.

Thank you for your answer.
I know I should be happy about the good response to Tarceva in this regard. I do consider myself lucky.
But I also understand that there is still cancer in my central nervous system that can spread to the leptominengial space at any time.

So basically I have no choice but to wait for symptoms to appear . That is what I was afraid of.
I think we need new detection methods because the incidents of this dreaded complication is going up thanks to the newer Therapies.

Thanks again
Kempten

catdander
I'm not sure why you're

I'm not sure why you're assuming you'll get lepto. It went from being quite rare to being still very unusual so I hope you don't assume it will happen, most people still never develop lepto.

kempten
Thanks.

Thanks.
I was under the impression that with so many brain mets it was just a matter of time until one develops lepto.
The reason I'm afraid is that nothing really can prevent the brain mets from seeding.
Taking care of the brain mets one at a time with SRS will leave all those microscopic cells free to invade the rest of the central nervous system.
What are the statistics of Lepto for patients with many synchronous brain mets that are now treated with SRS and not WBRT ?
I know even preventative WBRT is no guarantee to prevent lepto.
Reading the cancer histories of long term survivors I noticed quite a few who eventually developed Lepto.
I might just make myself sick worrying about this, but I don't think it is totally unfounded.

Kempten

JimC
Kempten,

Kempten,

As Janine said, leptomeningeal carcinomatosis, though no longer considered rare, occurs much less frequently than do multiple brain mets, and it cannot be said that LC is an eventuality, although of course longer survival increases the possibility somewhat. For most patients, whole brain radiation effectively keeps the central nervous system free of cancer for an extended period of time, and SRS is quite an effective treatment for a few brain mets. For some patients, whole brain radiation is not as effective, with additional lesions appearing after just a short time. If you've read my wife's history in my signature, you've seen that for her WBR was effective for just a few months, at which point many new lesions were discovered, with LC appearing a few months later. But her situation was not at all typical, and can't be compared to that of a patient whose brain mets are well-controlled by radiation treatment. She was just one of those patients for whom radiation was not effective.

JimC
Forum moderator
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<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>