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!
Reply # - June 12, 2014, 06:34 PM
We'll need to hear from one of our faculty but until then I've done a little looking around.
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/
Reply # - June 12, 2014, 06:58 PM
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.
Reply # - June 12, 2014, 08:25 PM
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.
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?
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
Reply # - June 12, 2014, 10:09 PM
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.
Reply # - June 13, 2014, 05:11 AM
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
Reply # - June 13, 2014, 10:59 AM
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.
Reply # - June 13, 2014, 07:51 PM
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.
Reply # - June 13, 2014, 09:17 PM
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