Hello dear Team, can you please help me or ask Dr. West or Dr. Penell answer my Questions?
The last 2-3 months I had severe headaches, nausea, vomiting, balance difficulties. MRT and CT of the brain did not show any tumors. I have been on GILOTRIF since Feb, 2014 until now and had no sign of disease
(please see http://cancergrace.org/topic/ned-for-21-months-stop-gilotrif-2-question…).
I have EGFR-EXON 21 mutation.
2 weeks ago I did a liquorpunctation where a small amount (3) of tumour cells were found in the liquor. MRT of the brain and spinal cord shows an indication of meningeosis carcinomatosa.. Colour of liquor was clear.
Today liquid biopsy shows a weak T790M mutation and acquired resistance to GILOTRIF.
I will start with TAGRISSO by tomorrow. In two days I will have the planning meeting for radiation of my brain and spinal cord.
First Question: Since the last 2 months I had a very bad skin (facial) and have gastro-problems (vomiting blood). Do I have maybe a “wild-type” EGFR?
The last days the sense in my feet is reduced from day to day a little bit.
Second Question: (I don’t have the planning of radiation until yet, which area will be radiated? whole brain and spinal cord?, some parts of it?, some single points? There is no tumor in brain until now).
Third Question: Should I start TAGRISSO and radiation in parallel or should I start TAGRISSO and wait some days (weeks) before starting radiation?
Maybe my headache stops and I feel better and I don’t need to make the whole radiation? Or maybe TAGRISSO works sooo good that I will not need radiation at all.
It is a very important question for me and my two oncologists are not the same opinion. But I don’t want any medical advice from you, I will decide it with my oncologist but it is very important to know how American oncologist would decide in this case!
Forth question:
Could you kindly send me some articles about this situation and the research on this theme?
Thank you very much.
Reply # - September 21, 2016, 07:17 PM
Hi saralb,
Hi saralb,
I’m so sorry to know you have been diagnosed with Leptomeningeal metastases (LM).
I must say before I comment on your questions we can’t say what someone should do; we don’t have the info needed and it’s illegal for us to do so. Instead we can discuss what lung cancer specialists are doing in similar situations.
You asked about having an egfr wild type. I’m not sure why you ask but if I’m assuming correctly you want to know if it’s possible your progression in the brain and spinal fluid is because of a mutational change of the cancer that allows it. Maybe so but it too could have acquired a resistance by acquiring the t790m mutation. It’s often not possible to ever know this for sure. In the following link i a video discussion on brain mets. In it Dr. Taofeek Owonikoko at minute 17:40
discusses the idea of a cancer that once didn’t have the capacity to travel to the brain mutates to a point where it now can travel. With that theory in mind it’s easy to see how the cancer in the brain isn’t egfr positive but it’s just as easy to imagine the cancer picked up the t790m mutation.
http://cancergrace.org/lung/2015/12/12/ar_2015_cns_sanctuary_site_speci…
In the following link Dr. Nagpal gives an excellent summary of LM including treatment options. One of the important pieces of info is each plan is individualized and planned by experienced oncology teams who have access to info about the patient.
http://cancergrace.org/cancer-treatments/tag/carcinomatous-meningitis/
Continued...
Reply # - September 21, 2016, 07:19 PM
continued from previous post.
continued from previous post...
An effective treatment for some who have an egfr mutation and LM is described by Dr. West, “On the basis of a trial they were doing at University of North Carolina at Chapel Hill, giving “pulsed” Tarceva at 600 mg by mouth given one day every 4 days (so the same total amount as the normal daily administration, but four pills one one of every four days only), he started her on this, and she had symptomatic clearance and resolution/normalization of her cytology on a repeat LP. She tolerated this well and continued to feel better for many months.”
http://cancergrace.org/lung/2010/01/31/an-effective-treatment-for-some-…
Tagrisso is a new drug so there’s no evidence to show it works in the same way pulsed tarceva works to get into the cns but it makes sense to enough specialists that many are trying pulsed tagrisso in people with LM and have acquired resistance to 1st and 2nd gen tki. With or without radiation fits into the realm of individualized planning and considering whether or not there are symptoms that need immediate attention. An argument for pulse dosing tagrisso certainly fits into the case you’ve described of yourself and can be on the top of the list of options during your planning.
I hope this helps and I hope you find relief soon.
All best,
Janine
Reply # - September 22, 2016, 11:18 AM
Dear Janine,
Dear Janine,
thank you very much for your prompt answer.
We will keep in touch...
SaraLB