What are your thoughts on second opinions? (When, where)

[Karen_L]

In three weeks (starting August 11), I will be on vacation outside of Boston for two weeks. I never sought a true second opinion after the initial dx; I wanted to start treatment ASAP. I'm wondering if it makes sense to schedule a consult with an EGFR specialist while I'm back East. 

My thinking: 

• I have 2 EGFR mutations, one of which is considered rare (S768i, an Exon 20 point mutation-- not an insertion or deletion, which seem to be the foci of current research).
• I've been on Tagrisso after progression to my brain; a checkup brain MRI showed no new badness and apparent necrosis of the lesion that was there. 
• I have scans next week followed by a check-in with my oncologist
• If there is some progression, there's no question but that I'll stay on Tag, go on vacation (gotta live life, right?), get that second opinion, and start new treatment when I get back.
• --> The question is, do I seek a consult even if there is no progression (fingers crossed.)

Background: I'm satisfied with my treatment thus far; it's been right in line with NCCN guidelines. At every step of the process, my case has been reviewed by the tumor board, I have a close relationship with my radiation oncologist, who is also a researcher, and a good one with my oncologist. Although my oncologist is not a researcher, the head of the lung cancer doctors is a researcher and has a good reputation on the West Coast. The only thing that might initially have been done differently would have been a liquid biopsy in addition to a tissue biopsy.

Any thoughts would be welcome. 

As always, thanks.

Karen

 

 

 

[Tom Galli]

Karen,

I guess it is natural to always exploring options, and I understand your vacation destination is close to unique cancer research and treatment institutions. But, if I was satisfied with my treatment and results and on vacation, I'd overwhelmingly focus on vacation.

We all need to live with lung cancer. So, I'd lean toward enjoyment and put a second opinion on the shelf.

Stay the course.

Tom

 

[walfredo2001]

I wish you luck in your scans, and a fabulous vacation!

 

The second opinion could be interesting, and if you think it would help confirm your current plan, or provide new ideas it may be empowering and kind of fun.

 

If it stresses you out, and takes over your vacation, its probably not worth converting a vacation to a long medical appointment.

 

Wishing you the best!

[LilyMir]

Hi Karen,

Do you know how time demanding the second opinion would be? If it takes a couple of days out of a 2 week vacation, and I have access to a major cancer centre that can have easy access to my records, I would do it. If you are near Boston, I heard Dana Farber has an EGFR research focus.

Hope you have a wonderful vacation!

[Judy M2]

Dana Farber and Mass General both have excellent EGFR centers, FYI. 

[Karen_L]

@Judy M2That's really the only reason I'd consider it-- I'll be a ferry ride away from Boston.... We'll see, eh?

[Karen_L]

@LilyMir, this is exactly what I'm weighing. You raise a good point about the time consuming nature of a second opinion. There's day-of time demands, but also the hassle/work of gathering records, etc. Thanks for your input.

[Karen_L]

@walfredo2001 Who else but a lung cancer person would suggest a second opinion might be kind of fun? I love it. Learning about all this stuff *is* cool, for sure. Hope you're feeling well.

[LilyMir]

1 hour ago, Karen_L said:

@LilyMir, this is exactly what I'm weighing. You raise a good point about the time consuming nature of a second opinion. There's day-of time demands, but also the hassle/work of gathering records, etc. Thanks for your input.

Good luck and keep us posted Karen! Have fun!

[Pstar]

Also wishing you good luck if you do pursue a second opinion, but most of all, enjoy your vacation Karen!

Pam

[Karen_L]

@Tom GalliThanks for your comments. You've put your finger on a potential down side of being a knowledgeable advocate for one's own care, which is the "I must leave no stone unturned in my quest to be cured of lung cancer" mindset. More and more, I think leading a full life, and healing, have to include not thinking about lung cancer. A complete vacation, as it were. Thanks. 

[Karen_L]

@Pstar, thanks! I still have a few weeks before I leave, but I'm really excited. 

[Justin1970]

Hi Karen 

Goodluck with whatever you decide, have a great holiday and enjoy yourself 

Take care Justin x 

[Rower Michelle]

Just to weigh in here.  This question came up during the ask an expert session at the Lungevity conference with Jessica Lin.   
Her response was surprising to many of us in that she said that the best time to obtain a second opinion is when “it is a quiet time and disease is stable”.  That way there’s something to compare to if there is progression.  
 

I just had one of my friends see Mark Awad MD at Dana Farber where there is an EGFR Center of excellence.  Dana Farber does all the heavy lifting to obtain all your medical records.  All that’s required is about two hours of your time.   It’s a very slick set up since they are used to accommodating out of state requests and it does take about three weeks to get an appointment.   
That’s my take on it (and yeah, enjoy your vacation!!!)

[Karen_L]

@Rower MichelleThis is really interesting and very helpful. How did you come to recommend Mark Awad?

[Rower Michelle]

Here is the information on the center of excellence:

https://www.dana-farber.org/newsroom/news-releases/2020/dana-farber-cancer-institute-to-establish-chen-huang-center-for-egfr-mutant-lung-cancers/
 

Dr Janne was no longer accepting new patients and Mark Awad MD is his partner.  The Go2Foundation has a clinical research program to find mutant specific experts.   Lungevity also has a similar resource.  
 

The EGFR mutation was discovered by Dr Janne and his team at Dana Farber.  Patients come from all over the world to see them.   
 

Since I’m four years into this I’ve learned a lot along the way about the “mutant doctors” and where they are so my plan B is pretty clear at this point.  
 

The other option is completely virtual and costs about $800 out of pocket for a phone consultation with Ross Camidge MD from Colorado University.   That way you don’t ever have to leave home.  My girlfriend got a virtual opinion from Camidge and an in person second opinion from Awad.  In collaboration with our local oncologist the three of them were able to identify a good EGFR clinical trial   
 

Let me know if you have any other questions.   Michelle

[LilyMir]

BTW, Dana Farber has a yearly event for EGFR patients. Back in May I attended their second one: "Annual Living with EGFR-Mutant Lung Cancer: A Virtual Forum for Patients and Caregivers".  

It was nice though personally I did not learn anything I did not know before but new patients who may not have done much research may find the info useful. I am not sure if they posted the recording but below I paste the Q/A part of the event in case it helps anyone here.

I am starting to think I need to find a job in Boston and move there now, if I make it through chemo 😁

Today my surgeon (who is a million times better human than my oncologist) booked me for my first check up contrast CT scan for early September. My scanziety already started!

========

Q/A Dana Farber

Dr. Mark Awad

Dr. Pasi A. Janne

Icandace Woods  (admin)

===

Anonymous Attendee       3:04 PM

With a liquid biopsy, with EGFR mutation Exon 21 L858R, if other mutations show up, how much do they impact the choice of treatment?

 

Dr. Mark Awad       3:21 PM

The EGFR L858R mutation tends to be the most dominant/important mutation found in liquid biopsy, so some of the other mutations that could be identified do not necessarily impact the choice of treatment.

 

Anonymous Attendee       3:08 PM

Is it ok if a holistic doctor clears out toxins in the body to minimize fatigue side effects with Tagrisso, in between chemo treatments. Chemo being used now after Tagrisso resistance.

 

Dr. Mark Awad       3:25 PM

Often, many complementary therapies can be used safely in conjunction with osimertinib (Tagrisso). It is always helpful and important to discuss with your oncologist other therapies you might be considering since some of them might interact with cancer therapies and/or cause different side effects.

 

Anonymous Attendee       3:14 PM

Is EGFR hereditary in women?

 

Dr. Mark Awad       3:28 PM

The vast majority (>99%) of EGFR-mutant lung cancers have no hereditary component in women nor in men. We do not understand why EGFR-mutant lung cancer is a bit more common in women. There is a extremely rare form of EGFR-mutant lung cancer where an EGFR T790M mutation might be present at initial diagnosis (in addition to the activating EGFR mutation), and other family members can be affected.

 

Myriam Armant       3:21 PM

Why continue Osimertinib when resistance develops?

Is Osimertinib blocks proliferation of tumor cells, how do they stil acquire new mutations?

 

Dr. Mark Awad       3:35 PM

Sometimes many sites of cancer are under excellent control with osimertinib, but only one small spot starts regrowing or developing resistance. In that circumstance, we might continue osimertinib and treat that growing spot with radiation, for example. Another example where we might continue osimertinib: Some patients have brain metastases at diagnosis, which can respond really well to osimertinib since it has excellent penetration into the central nervous system (brain). If resistance develops in the body but there is still ongoing cancer control in the brain, we might continue osimertinib to maintain control in the brain but add on chemotherapy to help treat the cancer in the body.

 

For the 2nd question, we know that osimertinib can kill the vast majority of cancer cells in the body. However, a small fraction of cancer cells lay dormant without completing dying; these are sometimes referred to as "persister" cells, and these can mutate or regrow in the future. This is an intense area of study @ Dana-Farber.

 

Lily Mirbel (You)       3:24 PM

Would the use of Tagrisso as adjuvant after complete resection cause resistance in the future just like it does for metastatic therapy? If so, why use it as adjuvant rather as treatment if recurrence happens?

 

Dr. Mark Awad       3:40 PM

This is an important question we are hoping to learn from long-term follow up on the adjuvant "ADAURA" clinical trial. Ideally, adjuvant osimertinib (Tagrisso) kills off any stray cancer cells left behind after surgery so that recurrence never recurs. But some cancers do regrow while on adjuvant Tagrisso which means they are resistant to treatment. This is a big question for our lung cancer research community.

 

mary sease       3:36 PM

What is the recommended time frame, ideal timeframe to re-biopsy?  Annually?  Bi-Annually?

 

Dr. Jia Luo       3:43 PM

Thank you Mary for this question. The right time to rebiopsy should be discussed with your medical oncologist. In general, if someone is not on a clinical trial, the time to get a tumor rebiopsy is when there is a growing spot suspicious for cancer. This helps your oncologist decide the right next treatment strategy.

 

Anonymous Attendee       3:38 PM

what the longest known case/s of patients taking Osimertinib and having no disease progression?

 

Dr. Mark Awad       3:43 PM

Every patient is different. There are some patients who have been on osimertinib for many years who have not developed disease progression. In other cases, resistance can develop sooner. Because it is hard for us to predict how long osimertinib will keep cancer under control, we typically keep getting scans at regular intervals to try to detect resistance as early as possible.

 

Anonymous Attendee       3:38 PM

How accurate for lung cancer is a liver biopsy, after resistance to Tagrisso (12mo after), for finding the best treatment to target EGFR Metastatic lung cancer and also with a new liquid biopsy? At beginning of stage 4 EGFR Exon 21 L858R - Tissue biopsy was not recommended due to age of patienct.

 

Dr. Mark Awad       3:46 PM

To determine mechanisms of resistance to osimertinib, a blood-based "liquid" biopsy to look for circulating tumor DNA (ctDNA) is a safe, less-invasive alternative to need biopsies, so that can be a good option when a tissue biopsy is felt to be unsafe. There are some risks to biopsies (e.g. pain, bleeding, etc), so it needs to be considered carefully in discussion with your oncologist.

 

Laura Book       3:43 PM

Are any MRD tests available ...like from Signatera?

 

Dr. Jia Luo       3:47 PM

Thank you for this question Laura. As discussed, detecting circulating tumor DNA within all of the DNA in the blood (cell free DNA) is like a needle in a haystack. This is an area of active research to develop even better state of the art tests to push our boundaries what can be detected. There is no “minimal residual disease” circulating tumor DNA test that we currently recommend routinely in the clinic. We are hopeful through research we will be able to develop actionable “minimal residual disease circulating tumor DNA” tests!

 

Anonymous Attendee       3:43 PM

When will the complete results of the adjuvant ADAURA trial come out?

 

Dr. Mark Awad       3:50 PM

I am not sure of when the final analysis from ADAURA will be presented/published. Interim analyses so far seem to indicate that use of osimertinib after surgery helps patients live longer, but additional follow up on this trial will be needed.

 

Anonymous Attendee       3:45 PM

Can it be environmental toxins that influence the efficacy of Tagrisso like target drugs?  Everyone's bodies are not created equal, or react the same to enviornmental toxins etc.

 

Dr. Mark Awad       3:58 PM

We currently do not have a clear understanding of why there is variability in the duration of response to drugs like osimertinib (Tagrisso). We are trying to understand this variation through some of our research at Dana-Farber.

 

Anonymous Attendee       3:47 PM

In the case of stage IV that is in remission for a couple years, how frequently should PET scans be done for monitoring? Could ctDNA be used instead of PET or CT scans?

 

Dr. Jia Luo       3:51 PM

Thank you for this question. PET scans vs CT scans for monitoring should be discussed with your medical oncologist. These scans have different strengths and it depends on where your cancer is eg. bone. Great question whether ctDNA could be used in this setting! An area of personal research interest so I hope so in the future!

 

Laura Book       3:48 PM

Dr. Lovely is currently studying persister cells in EGFR + lung cancer as part of an EGFR Resisters research award. Is Dana-Farber working or communicating with her on this topic?

 

Pasi Jänne       3:57 PM

Hi - we certainly communicate our findings through meetings and publications.  I am awate of her work but we are not actively collaborating with Dr. Lovly.

 

Anonymous Attendee       3:49 PM

Are ctDNA blood tests useful during adjuvant chemo followed by adjuvant 3-year Tagrisso or are levels too small to detect in such cases? Is it a waste of money then?

 

Dr. Jia Luo       3:55 PM

Thank you for this question. This is an area of active research whether ctDNA tests help in this setting and the pros and cons of doing these tests should be discussed with your medical oncologist.

 

Bebe Lagrotteria McCarron       3:51 PM

How often do you have this forum or one like it for the patient and or caregiver to stay informed; as well as other resources for information do you recommend ?

 

Icandace Woods       3:59 PM

Our forums are held annually, but we forsee additional educational conferences coming soon in the future. If you would like to stay informed of future events, highlights, latest research  you can sign up for our electronic newsletter by emailing us at DFCIEGFRcenter@DFCI.Harvard.edu

 

Anonymous Attendee       3:53 PM

...thanks for your reply. What is the long-term radiation risks for constant CT scans (every 3 months for instance) to detect resistance for Osimertinib.

 

Dr. Jia Luo       3:57 PM

Great question - I am a fan of this chart: https://xkcd.com/radiation/ that that does a pretty good job of giving a sense of the risk of radiation from CT scans vs X-rays vs other things… like a cross country airplane flight!

 

Winston chen       3:57 PM

Thank you very much for the excellent presentations. Very informative.

 

Icandace Woods       3:59 PM

You're very welcome. Thank you for making today possible.

[Judy M2]

@LilyMir, I attended the same DF presentation. I pretty much consume all possible EGFR-related information. 

[LilyMir]

9 minutes ago, Judy M2 said:

@LilyMir, I attended the same DF presentation. I pretty much consume all possible EGFR-related information. 

Fantastic @Judy M2! I probably need to touch base with you sometime soon about your Tagrisso experience/knowledge. I am supposed to start 3 years on it this Sep! I aim so nervous of this marathon as it is kind of experimental for adjuvant use still!

[Judy M2]

Tagrisso has much easier for me than chemo or radiation. You may or may not get side effects. Mine are: splitting nails, frizzy hair, nasal allergies and an itchy rash/eczema that comes and goes. Everything is manageable. I'm on it for 28 months so far. 

I can recommend these private Facebook groups for support and info:

Tagrisso (osimertinib) Patients & Caregivers Group: https://www.facebook.com/groups/2098822473719352/?ref=share

LUNGevity Targeted Therapies Group: https://www.facebook.com/groups/targetedtherapylung/?ref=share

LUNGevity EGFR Group: https://www.facebook.com/groups/EGFRlung/?ref=share

EGFR Resisters Lung Cancer Patient Group: https://www.facebook.com/groups/EGFRResisters/?ref=share

Just know that all groups can be a double-edged sword, because people share both good and bad or sad news. 

[Minh]

Did they say anything about using Targrisso as adjuvant therapy for stage 1a lung cancer?
 

[Rower Michelle]

There is a clinical trial for early stages-

https://www.nejm.org/doi/full/10.1056/NEJMoa2027071
 

It’s starting to look like there’s a very high recurrence rate for early stage oncogene cancers, pretty soon the treatment guidelines will probably be revised.   If anything the monitoring for early stages will at a minimum be increased.  There are a lot of people looking at this trial…

[LilyMir]

I believe FDA approved adjuvant Tagrisso use for stages IB-IIIA. https://pubmed.ncbi.nlm.nih.gov/34301748/
 

I don’t recall what was said exactly during the Dana Farber symposium but you may be able to ask for recording from them.

[Minh]

Thanks for info.

I am stage 1a and my oncologist told me I can take Targrisso if I wish. But I am not sure whether or not I should take it. Is there any benefit or risk for me to take it?

[LilyMir]

Did your doctor tell you the balance of risk vs. benefit in your specific case? Tagrisso has risks, but recurrence also happens sometimes in early stages but not often. So Tagrisso is most beneficial the more advanced the stage. I am afraid your decision will be hard. For me the risk of recurrence is 50-70% so not a hard decision for me to make. I feel for you trying to balance uncertain risks. Good luck whatever you decide. Glad you are very early stage! Come to think of it, I don’t think stage 1a is approved by FDA since risk of Tagrisso may not be worth it? Maybe I am mistaken. Can you get a second opinion?