fred9999
Posts:6
My mum had been diagnosised leptomeningeal carcinomatosis spreaded from Lung tumor in Dec 2012.
She declined very fast. It seemed that nothing can stop her hitting the ground.
Luckily the doctor told me they somehow find EGFR positive from her tumor. We started using irressa on her on 25th of Dec.
She was semi-conscious before irressa . But she started gaining her strength slowly since taking irressa.
I understand now a day, few we can do to treat leptomeningeal carcinomatosis. As irressa is now controlling the progress of the illness, my question is if a whole brain radiotherapy is necessary? Will it help in the future?
Thank you very much if you can help!!!
Forums
Reply # - February 25, 2013, 05:22 AM
Reply To: My mum had been diagnosised leptomeningeal
Hallo Fred. I'm really sorry about your mother, although it is great to hear that the Iressa is helping her.
You only need to post your question once - one of the doctors will see it and answer later in the day (it's still early in the US).
While you're waiting, you will see that if you search the site there are some threads discussing this topic. Here are two recent quotes from Dr West, posted in December:
"I would say that the value of whole brain radiation (WBR) is somewhat between underwhelming and negligible in meningeal carcinomatosis."
"WBR is certainly an approach that is tried in some people with leptomeningeal carcinomatosis, but it’s not a therapy that has enjoyed clear success in that setting, in contrast with its indication in treatment of multifocal brain metastases."
(both from this thread http://cancergrace.org/topic/is-pulsed-dose-tarceva-still-an-option).
Tarceva, as you probably know, is similar to Iressa, and like Iressa is directed at people with an EGFR mutation. There have been experiments with using high doses of Tarceva for people with leptomeningeal disease - here's a thread about one such experiement:
http://cancergrace.org/lung/2011/11/03/pulsed-tarceva-for-lmc/
That may help to explain why your mother is doing well, and I hope her improvement continues.
Reply # - February 25, 2013, 06:49 AM
Reply To: My mum had been diagnosised leptomeningeal
Thank you so much, certain spring for your kind reply.
Also sorry about the 2 times post as I am new to the forum and I posted once this morning and could not find it anywhere. Therefore I did it again. Really sorry about it.
Read all you reply. It is very helpful. Although my mum recovered well. She still lost parts of her memory and still can not walk well.
Read the other thread you told me. I think maybe we ll think about WBR when she is much better than now.
Really appreciated!!!
Reply # - February 25, 2013, 08:19 PM
Reply To: My mum had been diagnosised leptomeningeal
I am far more optimistic about the concept of pulsed EGFR inhibitors than whole brain radiation (WBR). There isn't a lot of study of WBR in leptomeningeal carcinomatosis, but what we do know hasn't been especially encouraging.
I'm glad she has improved with Iressa. Good luck.
-Dr. West
Reply # - March 8, 2013, 11:17 PM
Reply To: My mum had been diagnosised leptomeningeal
FYI - new report from the Netherlands of two cases that might be of interest:
Title: High-dose, pulsatile erlotinib in two NSCLC patients with leptomeningeal metastases—One with a remarkable thoracic response as well
http://www.lungcancerjournal.info/article/PIIS016950021300010X
Best hopes,
Craig
Reply # - March 8, 2013, 11:48 PM
Reply To: My mum had been diagnosised leptomeningeal
Very appreciated for above replies, I will update my mum s situation frequently. Thank you so much.
Reply # - March 9, 2013, 10:35 PM
Reply To: My mum had been diagnosised leptomeningeal
Craig's link is very interesting - unfortunately one can't read the entire article, even if registered, as it's not free. Here's one along the same lines, albeit from 2011, but still helpful:
http://intl-neuro-oncology.oxfordjournals.org/content/13/12/1364.full
Best of luck,
Jazz