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Non small cell lung cancer

Non small cell lung cancer

Posted by Bird on Jun 23, 2020 4:05 pm

Hi there 
I have a question 
My mom just did 6.5 weeks everyday radiation and 5 treatments of chemo 
Her treatments ended May 8

she had her ct scan last week 
she got a call from the dr today and he said the spot on her lung got smaller great news but does not qualify for immunotherapy something about being egfr positive 
All along he had told us if all goes well that she would start immunotherapy once a mth for a year 
I don’t understand why she cannot have immunotherapy now 
he said she would be followed with scan every 3 months

we are relieved that it shrunk but confused about immunotherapy 

can someone explain or clarify this ?

thank you 
 

Re: Non small cell lung cancer

Posted by Kuching on Jun 24, 2020 7:58 am

Hello Bird‍ .  I’m sure there will be lots of people jumping in here who know a lot more about this than I do, but to get things started: if she is EGFR+, that’s good news, it means she can take a targeted therapy drug, like Tagrisso, just a pill a day.  To know this, the doctor would have had to do some kind of biopsy - did this happen?  And CAT scans every 3 months seem to be pretty standard for people on EGFR drugs.  EGFR+ patients don’t necessarily respond well to immunotherapy, which may be why that is off the table.  You need to clarify this with her doctor, and get her started on the pills - it may take a few days/weeks for them to get the funding approved, because they are expensive!  Wishing you all the best!

Re: Non small cell lung cancer

Posted by Bird on Jun 24, 2020 8:04 am

Yes she had a biopsy which showed us she is egfr positive 

thanks for responding much appreciated 

Re: Non small cell lung cancer

Posted by starshine1ca on Jun 25, 2020 10:13 am

Hi Bird,

I am so very sorry to hear about your Mom and she is very blessed to have you caring for her.  I too have the same, stage 3 non small cell lung cancer, just completed 6 weeks of radiation daily and chemo bi-weekly.  I completed mine on May 16th and will be starting immunotherapy on July 6th.
  I just got my cat scan done yesterday so I am pretty anxious to know how treatment worked so far but my understanding is that it may still be too inflamed to see the results.  They are checking to see if the cancer has travelled anywhere else in my body.   I will be on Imfinzi, the drug for immunotherapy for one year. I am not sure if I am EGFR+  or not.  Sending you positive energy and hope your Mom is doing well.  Did they not mention Imfinzi as an option? 

SIncerely, Anita 

Re: Non small cell lung cancer

Posted by WestCoastSailor on Jun 25, 2020 10:58 am

Bird‍ 

Kuching‍ did a good job. The standard of care for EGFR+ is targeted therapy. And don't get me started on the uneven application of the recommended drug - osimertinib not being available in the same way across Canada. I'm currently on afatinib and have been stable for a year which makes it two years since diagnosis. Pretty remarkable since I was told that 50% of patients diagnosed at my stage die before seventeen months.

starshine1ca‍ I was on durvalumab (Imfinzi) for 9 months but then saw progression. Not unusual as immunotherapy relies on PDL-1 mutation and that is usually absent in EGFR+ patients. It is not clear why I wasn't tested for this biomarker before treatment started. The panel of biomarkers and treatments for lung cancer patients is accelerating rapidly and changing the rate of mortality dramatically. I am unusual as it is an incredible treatment that has an astounding PFS (progression free survival) as well as OS (overall survival.) Acronyms I wish I didn't know.

Please stay in touch...

Angus
My story: http://journey.anguspratt.ca

Re: Non small cell lung cancer

Posted by Bird on Jun 25, 2020 11:46 am

Thank you for your message 

Re: Non small cell lung cancer

Posted by Bird on Jun 25, 2020 12:16 pm

I don’t think Imfinzi was mentioned because she was told immunotherapy is not an option for her because she is egfr +

Re: Non small cell lung cancer

Posted by Lianne_adminCCS on Jun 25, 2020 1:38 pm

Bird‍ 
I am so glad you have connected with KuchingWestCoastSailor‍ and starshine1ca‍ 

Does this help with your understanding somewhat of the decision? These responses will also help you form a list of questions to follow up with the oncologist with as to what treatments are applicable , which are not and the whys. Having those questions answered and documented for yourself and your mom will be helpful.

starshine1ca‍ - congratulations on completing radiation and chemo. Hoping you get some great news about your CT and let us know how the immunotherapy goes.

Lianne

Re: Non small cell lung cancer

Posted by WestCoastSailor on Jun 25, 2020 2:22 pm

Bird‍ 

Thanks for the prompt feedback. Durvalumab (Imfinzi) and pembrolizumab (Keytruda) are immunotherapies. And in an EGFR+ patient are generaly not used.

Here is a link to a recent webinar presented by Dr Noonan - one of the foremost lung cancer clinicians in Canada on the current state of treatment. https://cancerconnection.ca/discussions/viewtopic/48/64856?post_id=315121#p315121 Don't hesitate to pepper the oncologist with questions. They spend years training for this and hours keeping up with the best treatments for their patients. Engaged patients are the ones that respond best to the treatments.

Let us know what you think of the webinar.

Angus
My story: http://journey.anguspratt.ca

Re: Non small cell lung cancer

Posted by Bird on Jun 25, 2020 3:29 pm

You are so kind to  send me this 
i will share with my family 

thank you 

Re: Non small cell lung cancer

Posted by starshine1ca on Jun 26, 2020 10:57 am

Thank you so much Bird for sharing.  I am now going to ask my doctor about the test your Mom had for egfr .  And thank you Angus for sharing your successes with it.  You give me hope!  I should really question this egfr then.  And thank you so much, Lianne.  I can't wait to find out how the treatment went and I will be sure to share as soon as I find out.  :-) 

Re: Non small cell lung cancer

Posted by WestCoastSailor on Jun 29, 2020 9:22 pm

Actually starshine1ca‍  what you want is the genetic panel. There are a ton of mutations that are being used as targets for TKI's. EGFR was the first and is the most common but there are a whole raft of them (ALK, MET, ROS1) to name a few.

Angus
My story: http://journey.anguspratt.ca