Dear Cancer Grace Team,
Thank you for the amazing work you do to support families like us.
My mom (76 year old) was recently admitted to hospital with massive pleural efussion in her right lung.
They performed Thoracoscopy + Talc Pleurodesis and upon performing pleural biopsy they confirmed today it as Adenocarcinoma (IHC markers - TTF1 - nuclear positive and P40 - negative).
Immediately after biopsy (before report came out), Doctors recommended to start Gefitinib or Osimertinib depending on our finances.
Our family didnt act and took discharge and waited for the biopsy report (which came out today).
Our family has to take a collective decision now and would greatly appreciate if you could please provide inputs on whether Gefitinib or Osimertinib works well in her case and which medicine has less side effects?
Also is general chemo an option for us? should we focus on palliative care only (considering her age and diabetic/high BP condition)?
This is my first post and first cancer experience in our family and just started researching more on this subject (so please excuse me if this question has already been answered)
Best Regards,
Romi
Reply # - March 19, 2021, 01:52 PM
Hello Romi, Welcome to Grace.
Hello Romi,
Welcome to Grace. I'm so sorry your mother is going through this. It's true that when cancer cells are found in a pleural effusion it's normally considered treatable but not curable. The type of treatment best for this depends on whether or not there is a specific mutation (for which there are targeted drugs) or an abundance of specific proteins known as PD-1 and PD L1 (for which there are immunotherapies). Chemo with or without immunotherapy would also be an option if she has neither a driver mutation (mutation that drives the cancer and there's a drug that inhibits it) nor high levels of pd 1 or pd l1.
Since her doctor suggested Gefitinib or Osimertinib it would seem she has an EGFR mutation. If so, osimertinib would be the drug of choice. Both Gefitinib and osimertinib have efficacy in those with an EGFR mutation. Osimertinib is a later-generation drug that has several benefits over gefitinib, it has fewer/less severe side effects, it has efficacy in the brain which the other usually does not, and it keeps cancer in check for a longer period of time.
If you are in the US and have insurance the insurance co will cover for osimertinib. If there is a copay left that exceeds her ability to pay, the pharma co that makes the drug usually will help if you ask. If she is outside the US there's usually government-paid health care that provides the "standard of care" treatment. Osimertinib is considered the standard of care for people with advanced nsclc with an EGFR mutation in most countries.
There is some confusion over the difference between palliative care and hospice care. Hospice care provides comfort care for those who no longer use anticancer treatment like chemo and osimertinib and is considered a type of palliative care. Palliative care is comfort care for anyone whether or not they receive anticancer treatment. As long as the doctor and your mom want to use anticancer treatment there's no reason to move to hospice. Since hospice care can provide excellent help when anticancer treatment is no longer providing more help than harm, it's a good idea to have that difficult conversation with the oncology team prior to when it's needed.
Please let us know if we can be of more help. I hope your mom gets what she needs. She is already lucky, in that she has family searching for the best for her.
All the best to you and yours,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to Hello Romi, Welcome to Grace. by JanineT GRACE …
Reply # - March 21, 2021, 12:47 AM
Thank you
Hello Janine,
Thank you so much for your prompt and detailed response. Its very helpful to me.
I talked to my family members (I live in USA and my mom is in India) and they mentioned the doctors are currently assuming 40% chance for EGFR mutation and asked to start Gefitinib rightaway while waiting for other test results.
To confirm, they ordered two new tests - Molecular diagnostics - Next Generation Sequencing (NGS) and PDL-1 test. It will take 10 days for the results to come and based on the results, if its confirmed as EGFR they want to move us to Osimertinib or Immunotherapy if PDL1 > 50%. The recommended treatment matches with what you explained above and very assuring to know they are moving in the right direction. They also asked us to consider Guadrant360 test , but its costing out of pocket $5k and didnt made a decision yet.
I will keep you posted about the test results and will seek additional inputs/guidance based on the results.
Stay Safe and thank you once again for all your help.
Best Regards,
Romi
Reply # - March 22, 2021, 12:48 PM
Thanks for the update. I'm
Thanks for the update. I'm so glad she is getting good attention. If she has the mutation osimertinib is the best bet. Further testing isn't needed and as you pointed out very costly nor is there a reason to begin Gefitinib.
Keep us posted and best of luck. I know being so far away is difficult to say the least so I'm glad you can confirm she is getting what she needs.
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - March 29, 2021, 11:28 PM
Tagrisso/iressa combination
Hello Janine,
are you aware of stage 4 patients receiving Tagrisso and iressa in first line setting to increase PFS? Two patients at the "egfr resisters" facebook page mentioned it and they were going to speak to their doctors for more information. I was wondering if you knew whether clinics in the USA are trying this out already? I can only find the results of one study that supports this claim.
Best regards
Reply # - March 30, 2021, 10:59 AM
I have not heard of anyone
I have not heard of anyone using both. I seem to remember a mention of it in one of our videos (there's so much incidental info in those conversations I hate to miss any of them). I'll look around but that definitely not something that's being used in the US, not by the most experienced lung cancer specialists.
Hope you and yours are doing well,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - March 30, 2021, 01:24 PM
The most up-to-date info will
The most up-to-date info will be found ASCO 2020 and 2020 Targeted Therapies Forum. Many have transcripts so you could search transcripts for specific words or wording. Because of covid the 2020 targeted therapies forum wasn't held until this past fall virtually.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - March 30, 2021, 05:09 PM
Tagrisso in combination with Iressa
GRACE Community Outreach Team
Hi Rowan,
There is one active (but not currently recruiting) Phase I study testing the efficacy and safety of this combination: Osimertinib and Gefitinib in EGFR Inhibitor naïve Advanced EGFR Mutant Lung Cancer - Full Text View - ClinicalTrials.gov No results posted yet.
Jim C Forum Moderator
Reply # - May 2, 2021, 01:29 AM
Thanks
Thank you for the replies Jim and Janine.
My mother was NED as at feb 2021. Next pet scan due mid year. We want her to spend as much time on tagrisso as possible.
After speaking to a few patients starting on tagrisso, they are combing egfr tki therapy with metformin, statins and aspirin saying it is thought to increase pfs. How certain is the science on this? Is it worth trying out?
Btw- She is a cardiac patient also so she is already taking aspirin and a statin only missing out on the metformin.
kind regards
rowan
In reply to Thanks by Rowan
Reply # - May 2, 2021, 08:33 AM
Tagrisso and metformin
GRACE Community Outreach Team
Hi Rowan,
Wonderful that your mother was NED at the most recent scan. I hope she continues to have great results from Tagrisso.
As far as the addition of metformin to Tagrisso therapy, the only "evidence" comes from a study which added metformin to other EGFR TKIs. It was a relatively small study, which is discussed here: Addition of Metformin to TKI Therapy Delivers ‘Unusual’ Result in Lung Cancer (cancernetwork.com) . In that study the improvements in PFS and OS were remarkable, but as the article points out, a larger study is needed to confirm the results. In addition, the thought that metformin could improve response to Tagrisso is by analogy to the results with the other TKIs, and that remains to be seen.
I've checked clinicaltrials.gov and the only relevant study is the one discussed in the article. But it's certainly something worth discussing with her doctors.
Jim C
Forum moderator
Reply # - May 6, 2021, 05:28 AM
Update 05/05/21
Hello,
she just received the results from her "cancer track" liquid biopsy. She has been on tagrisso for 6 months now. EGFR mutation is not showing up, tp53 still present with new mutation called TYMS. Not sure what this is. We are meant to meet her oncologist next week. Circulating tumor cells were 7 per ml last year, now its 4. Should it be zero if tagrisso is working?
please let me know your thoughts.
kind regards
rowan