Timeframe for research on Met mutation without accompanying ALK, ROS1,EFGR,KRAS

Portal Forums Cancer Treatments / Symptom Management Other Novel Therapies Timeframe for research on Met mutation without accompanying ALK, ROS1,EFGR,KRAS

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This topic contains 8 replies, has 4 voices, and was last updated by  lovelife8 3 years, 5 months ago.

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June 12, 2014 at 4:06 pm  #1264373    

lovelife8

Since my slice of the cancer mutational pie falls into a one percent category: Met mutation without any of the more common accompanying mutations as listed above, I was wondering what the “gestimate time wise” of having “it” come up in the pipeline for research might be? The “it” refers to MET without common sister or brother mutations?
Appreciative of even a “ball park” response!

June 12, 2014 at 6:34 pm  #1264376    
catdander forum moderator
catdander forum moderator

We’ll need to hear from one of our faculty but until then I’ve done a little looking around.

http://cancergrace.org/lung/2014/04/24/iaslc_wakelee_status_utility_cabozantinib/

While this trial’s primary objective isn’t MET it’s secondary objective isMET http://clinicaltrials.gov/ct2/show/NCT01708954?term=ECOG+1512&rank=1

Here is results from MET search on Grace if you’ve not seen it, http://cancergrace.org/lung/tag/met/

June 12, 2014 at 6:58 pm  #1264379    
Dr West
Dr West

We’re going to have some video material on work on MET that was presented at ASCO — expect to see that posted here in the next few weeks.

In addition to cabozantinib, crizotinib (XALKORI) was tested in some patients with MET-amplified NSCLC and showed some responses, so it’s very encouraging, if still based on small numbers.

Good luck.

-Dr. West

June 12, 2014 at 8:25 pm  #1264381    

lovelife8

1)
Thank you for your responsiveness. Guess I will have to pose the question as “to what extent” did my samples show met expression and/or amplification with Foundation One.

2)
When listening to the two suggested links, did I understand correctly that cabozantinib is on label for thyroid cancer but off label for lung cancer?

3)
As for crizotinib : is it likewise “on label” strictly for MET mutation or do you also have to “express” another one of the common EGFR or VGFR etc mutations? Is “on or off” for a chemo/radiation naive person like myself?

Again, many thank yous for your response. Karen

June 12, 2014 at 10:09 pm  #1264382    
Dr West
Dr West

cabozantinib is not approved for lung cancer, and crizotinib is not approved for ALK-negative NSCLC, so it may be quite challenging to get these very expensive medications covered outside of these indications today.

-Dr. West

June 13, 2014 at 5:11 am  #1264384    

lovelife8

Dr. West : Thank you for confirming what I thought I understood. I just wish that my oncologists could have been as forthcoming. It saves a lot of wasted research time and keeps you from jumping on the roller coaster ride of false hope.

I have written to Foundation One (Medicine) for clarification concerning expression/amplification of the MET mutation. Will share their response, once received. Was thrilled that my Meddicare Advantage PPO had picked up the tab for the mutation testing.

Still wondering why the latest biopsy which contained a new descriptor “large cell” (2014) was not included with the original samples from my 2013 surgery. Is this a good wondering question worth having answered?

Again, many thank yous. You have won a “heart spot” on my list of stellar physicians (less the oncologists).

Thought for the day: Which image is more encouraging to a patient?

An oncologist “Thinking outside the box” providing hope that research is moving forward even if not in time for your particular case OR

An oncologist “Thinking inside the box of protocols” running around in circles trying to make you fit into one even though your case is different?

I vote for the former! Warmest regards, Karen in the forest

Be well!

June 13, 2014 at 10:59 am  #1264389    
JimC Forum Moderator
JimC Forum Moderator

Hi Karen,

I’m always in favor of having more information rather than less (helping patients become knowledgeable being the reason GRACE exists!) so I think finding out more about the histology of your cancer would be a good thing. Since you are the kind of patient who researches her situation in order to be well-informed, that information can help direct your research.

My vote is for “all of the above”. I think a doctor should understand all of the standard options, any of which may work well for a specified patient without a particular driver mutation, yet be flexible enough to look for new, promising avenues of treatment.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

June 13, 2014 at 7:51 pm  #1264414    
Dr West
Dr West

While it’s certainly fine to try to seek more information, I don’t think it’s likely to lead to any change in management…the key issue is primarily whether a cancer is squamous or non-squamous NSCLC. Beyond that, there isn’t any clear value to histology beyond the molecular marker testing that you’ve already had.

-Dr. West

June 13, 2014 at 9:17 pm  #1264417    

lovelife8

My spinning my wheels are at rest. Will take your advice.

Think I have been given the greatest gift in life – to truly appreciate the uniqueness of the individual and the miracle that is the human body. I have gained an appreciation for the difficult role of the doctor and the beauty with which our interactions were straightforward and honest. They always respected my wishes.

There is a fine line between knowing you have “nothing in the magic bag” to offer that would alter my natural overall survival opportunity and saying it in meaningful ways.

My cardio thoracic surgeon is a superb physician’ He performed a brilliant thoracotomy/ULL lobectomy. I got out of bed the first night and never got into bed again. Recovery was swift and without major after effects. He accepted my decision to refuse chemo and radiation.

My pathologist (local) consulted with me re: four page report following surgery. He honestly conveyed the truth re: a NSCLC like mine– “likening it to a customer who likes to set up housekeeping in different parts of the home”. His honesty prepared me for recurrence.

My pulmonologist read my FO report, looked me the eyes and said: “maybe by 2060 yours might come up on the radar for research.” He prepared me for the “off label – on label” drug results as well as my not having the “secondary consort driver” for my Met mutation.

My ENT confirmed a paralyzed left vocal cord and reviewed the realities of surgical benefits at this particular stage. It further underscored my no intubation, no ventilation and no resuscitation orders.

Even with these doors closing, new doors of friendship are emerging.

I am grateful today that my doctors know how much I truly value them during this journey. They all stand ready to assist as I continue down the journey we call life. This is NOT meant to be a swan song. I am simply stating that my life continues as naturally as I live it. Blessings on your days and Be well! Karen

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