- Diagnosed with NSCLC Adenocarcinoma, stage 4, with 4 brain mets (March 2013)
- Cyber Knife (CK) to brain mets (March 2013), resolved
- Started Tarceva (April 2013)
- Lobectomy (November 2013), NED from the neck down until March 2016
- CK to another 4mm brain met in January 2014
- Recurrence on two brain mets (4mm), previously treated in March 2013 (October 2015)
- multiple very small lung nodules on both lungs (two a bit larger, a few mm, but no PET activity in the lungs), two active lymph nodes, plus two brain mets (4mm and 8mm) (March 2016)
- Liquid biopsy detects EGFR, but not T790M (April 2016)
- Bronchoscopy of lymph node fails (May 2016)
- same as March 2016, except for two lung nodules a few mm larger, one brain met stable (4mm), another
one to 9mm, and a new small met close to the optic nerve (June 2016)
The plan was to try Tagrisso off label for one or two months, hoping it would help with progression in the brain and below the neck. Otherwise, Carbo/Alimta, CK, and LITT. However, being that the brain mets are growing, I am scheduled for fractionated CK on July 12,13, and 14 (for the brain met close to the optic nerve), and Laser Intersticial Thermal Therapy (LITT) for the 9mm brain met.
Today, I received my Tagrisso, but unfortunately will not be able to do the echo until Wednesday. I am in very good health, otherwise.
My questions are:
1. Should I start Tagrisso tomorrow Saturday? I do not want to wait anymore. (BTW, I have not stopped my Tarceva (75mg). I will not be able to do the echocardiogram until Wednesday.
2. Being that the doctor still feels I have slow progression, am I taking a big risk trying to give Tagrisso a chance, when we have not been able to establish my T790M status? The only place where we could actually be able to do a tissue biopsy is on one of the lymph nodes but it is located between the aorta and pulmonary artery. My other option is to start chemo, but I am so reluctant to do that.
Thanks! Faith
Reply # - July 2, 2016, 09:06 AM
Hello,
Hello,
I'm sorry to hear about your progression. The question about the timing of the echocardiogram is best left to your local doctors, who have all the information including scan images, but I will say that a few days delay in starting treatment is not likely to be significant.
Dr. West hosted a discussion about Tagrisso, and the issue you raise was discussed here. The bottom line is that some non-T790M patients respond to Tagrisso, but chemotherapy or the afatinib/cetuximab option (a combination of EGFR-directed agents) are the standard options with a good track record.
JimC
Forum moderator
Reply # - July 2, 2016, 12:43 PM
Dear Jim:
Dear Jim:
Thank you very much for your response! I should have added this explanation to my message...
The doctor asked me to do the echo before starting Tagrisso as a baseline. In all honesty, I was not able to do it. I did have an EKG about two weeks ago and it was normal. I have no known heart condition.
If I can start Tagrisso before the echo I would only be taking it for four days, as my radiation oncologist has asked for a halt on oral therapy one week before CK and one week after. I would like to restart after LITT on the 23rd).
Questions:
1. Jim, I understand what you say about standard of care, however, when it comes to Afatinib, I am concerned about harsher side effects, especially, rashes. Also, would you be able to share what is the response rate for people who are EGFR+, with Exon 21? I think I read somewhere that people with Exon 19 deletions have better response rates to Afatinib.
2. If I respond to Tagrisso, wouldn't my brain be better protected than with Afatinib or chemo?
3. Can you share response rates for the chemo combo you described and severity of side effects?
4. Should I start Tagrisso tonight and take it for the next four days? I can always have an echo next Wednesday. (I am on vacation until Wednesday.)
As always, we can't thank you enough!
Faith
Reply # - July 4, 2016, 11:45 AM
Hi Faith,
Hi Faith,
I just wanted to let you know we are here and know you still have questions. I'm sorry but I'll need a more time to respond appropriately and will get to this asap.
It is impossible to say what one should do without detailed info and that we can not do. Just know a few days on or off treatment is most often of no consequence.
Janine
Reply # - July 4, 2016, 01:34 PM
Thank you, Janine, for your
Thank you, Janine, for your concern and the desire to get the best answers!
Today, I took my first Tagrisso pill without having done the echocardiogram. I am planning to have it done next Wednesday. I took a leap of faith!!!
I would appreciate it very much if while you look into the other data I have requested, you could answer this question:
IS IT COMMON FOR RADIATION ONCOLOGISTS TO ASK PATIENTS TO HALT ORAL TARGETED THERAPY BEFORE AND AFTER CYBER KNIFE? (Tarceva or Tagrisso) IF SO, HOW MUCH TIME IS THE PATIENT OFF ORAL THERAPY?
Thanks a million!
Faith
Reply # - July 4, 2016, 04:14 PM
For lack of data driven
For lack of data driven answer to your specific question about halting TKIs during radiation this is a good explanation of why oncologists usually do stop egfr inhibitor during radiation treatment.
http://cancergrace.org/lung/2011/01/03/adding-egfr-inhibitor-therapy-to…
The exact depends on the onc.
For now,
Janine