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Durvalumab - Imfinzi

Durvalumab - Imfinzi

Posted by WestCoastSailor on Jul 14, 2020 8:54 pm

Jmb‍ 

We have been having an interesting conversation about one of the latest approved immunotherapy for treatment of late stage lung cancer. I'll let her tell her story here but I wanted to mention that durvalumab has now become the standard of care in BC for Stage 3C non-resectable lung cancer. There are indications that it works well for certain patients. I wasn't one of them but then I was EGFR+ so am now on a targeted therapy.

I recently learned that as of a few months ago there were only 1200 patients in Canada that have received this drug. I'm curious about people's experience with it. I'm on synthryiod for the rest of my life as a result of one of the side effects but overall it was pretty amazing with its limited side effects.

In other news three month followup CT scans seem to be pretty normal fare. Is this the case for every lung cancer patient or are some of you only seeing it in a case of suspected metastasis?

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

Re: Durvalumab - Imfinzi

Posted by Jmb on Jul 15, 2020 8:08 am

My oncologist says for me it is either Durvalumab or monitor with CT scans for progression every three months ... door number 1 or door number 2? We will likely be discussing this next week and in the meantime my GP has requested a second opinion consult with a lung cancer specialist in Toronto. Fingers crossed that they will consider an out of towner consult  in these COVID-19 times in which we live.

Thoracic Oncology reported (2018) that immunotherapy is not best for everyone and may cause harm, especially for those with some EGFR mutations. As a non-resectable stage IIIB EGFR+ exon 21 PDL1 >50% kind of gal it would be reassuring to hear from a second source that Durvalumab is indeed the way to go as a best possible choice. Is there perhaps a door number 3? Would it be better to go straight to a targeted therapy from the chemo/radiation regimen I completed last month? Is targeted therapy even available to me as an option in Ontario or must I first progress to stage 4? 

When and for how long were you on the Durvalumab for Angus WestCoastSailor‍ ? Please feel comfortable to ignore if that is too invasive a question.
 
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Re: Durvalumab - Imfinzi

Posted by WestCoastSailor on Jul 15, 2020 10:40 am

Jmb‍ 

Not too invasive at all. There are some threads already on here where I talk about it pretty extensively. But to answer the question instead of making you search.

I was put on durvalumab in August of 2018 and discontinued on progression in March of 2019. Eight months. The progression was only caught on comparison back to the baseline scan. From 3 month scan to 3 month scan it was undetectable until the fourth scan.

You had asked about my EGFR+ mutation and indeed it is Exon 21. I'm currently on afatinib (a second generation TKI targeted therapy) and responding very well. Minimal side effects and "your lungs are as clear as I have seen them since I started looking at them two years ago." Not NED but as close as I am likely to get. There is a third generation drug available -- osimeritinb -- but because I am successful with my current drug I will only be offered it when the first stops working and if the T790M mutation has appeared.

I lost nothing by trying the durvalumab and I had everything to gain as it is potentially curative after the chemo/radiation.

That is a curious question about targeted therapy in Ontario and is definitely one I would ask my oncologist.  I can tell you that there is a lot of unevenness across the country in what is available as standard of care. One of the challenges in Ontario was that until recently oral chemo drugs (of which TKIs are) were not covered. I believe they are now.

Keep the questions coming. This is a new and rapidly evolving area of practice and sometimes because patients are the ones with their lives on the line they are more invested in getting information.

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

Re: Durvalumab - Imfinzi

Posted by Kuching on Jul 16, 2020 4:34 pm

Jmb‍ , I am also in Ontario but I’m stage 4.  I was on Gefitinib, then my oncologist (in Kingston) said there was a “window of opportunity” to switch to Tagrisso, so I did, but I don’t really know what the conditions were for qualifying.  I do know that for both drugs, it took her a week or so to get approval, so that I didn’t have to pay for them.  

I’ve  read a few things that indicate immunotherapy doesn’t work as well when you are EGFR+, so I would definitely ask about the targeted therapy drugs.  Also, there is a Facebook page called EGFR Resisters that you might be interested in joining.  People from all around the world, but they are all EGFR+, so lots of feedback on different treatments.

Good luck!

Re: Durvalumab - Imfinzi

Posted by Jmb on Jul 16, 2020 8:14 pm

Thank you very much for your response Kuching. I did join the EGFR Resisters and find it very supportive and informative. Are you also EGFR+? Were you diagnosed at stage 4 or did you progress? Please feel comfortable to ignore if this is too personal a question? I just started on this site this month and am not entirely sure of the etiquette. :)
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Re: Durvalumab - Imfinzi

Posted by Kuching on Jul 17, 2020 7:47 am

No worries Jmb‍ , ask away.  Yes I’m EGFR+, and was diagnosed stage 4 at the start - it had already spread to lymph nodes and a hip bone.  3 months on Gefitinib pretty much cleared everything up except the original lung tumour, and since then I’ve been stable.  CAT scan every 3 months, which seems to be the norm.  And I feel fine - no symptoms, I walk 2 hours every morning and go kayaking one day a week.  So stage 4 isn’t as bad as it sounds!

Re: Durvalumab - Imfinzi

Posted by User1987 on Jul 30, 2020 1:07 pm

My mom has stage 4 adenocarcinoma and we talked to the medical oncologist today. She is EGFR and ALK negative with a PDL1 > 50%. I was expecting the doctor to say she would be starting immunotherapy with Keytruda today, but he just said they had to do further testing to see if she was ROS1 + and if she was in that case, she would start targeted therapy. Her biopsy was taken on July 6th and I guess I’m a little frustrated that they didn’t order this ROS1+ test from the beginning and do a full mutation marker panel since then. So therapy is yet again delayed. 

From my understanding, immunotherapy does not work as well if someone is EGFR positive. But does this also apply when someone is ROS1 Positive as well?

Re: Durvalumab - Imfinzi

Posted by Jmb on Jul 30, 2020 5:03 pm

My understanding is also that immunotherapy was generally not successful with EGFR mutations and yet it seems to be the best choice for me at present time. I met with an oncologist at Princess Margaret Hospital in Toronto on Monday for a second opinion and she agreed with my doctor that Durvalumab is the way for me to go. It is “the standard of care”. She said that there seems to be a co-relation between EGFR PDL-1 >50% patients who previously smoked and better outcomes. I haven’t read anything about that anywhere but I did smoke over 30 years ago and my PDL-1 is >50% so I would love to help them prove that theory. @Kuching I have read that 2 weeks is the optimal time to start immunotherapy after chemo/radiation and I have been told that 2 months is the optimal time to start and I have also been told that a few days or weeks won’t make a big difference. 

On another note I was diagnosed IIIB adenocarcinoma in February but the staging criteria has been recently updated so it seems I am a stage IIIC instead. @westcoastsailor that puts me about where you were a little over 2 years ago. Did you also smoke when you were younger? 

 
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Re: Durvalumab - Imfinzi

Posted by WestCoastSailor on Jul 31, 2020 9:33 pm

Jmb‍ 

Nope Non-smoker here. Though I have two boys I would like to take out behind the wood shed and help them understand where their smoking is going to land them.

<rant>
I'm one of the random 5% that gets sideswiped by the smoking stigma. Less money on research, poor early diagnosis, and fewer effective treatments.
</rant>

I'm part of soon-to-be-launched campaign from Lung Cancer Canada around the stigma of lung cancer and smokers. I also like the slogan "If you have lungs you can get lung cancer."

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

Re: Durvalumab - Imfinzi

Posted by WestCoastSailor on Aug 8, 2020 8:56 pm

User1987‍ 

These incremental marker panels are a pain. More and more provinces are moving to the complete panel as SOP but we aren't there yet. I can assure you that once treatment starts it will move fast. And underlying it all you do know that you have pembrolizamab (Keytruda.)

Do you have the ROS1 results back yet?

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

Re: Durvalumab - Imfinzi

Posted by User1987 on Aug 8, 2020 10:18 pm

WestCoastSailor‍ 

Thank you Angus. We were under the impression that we would get the results for the ROS1 on Monday and start treatment then as well since we would have all the information we need. However,   we got a call from the nurse yesterday explaining that treatment wouldn’t be able to start on Monday as they do not have the results back yet and it will be changed to an over-the-phone doctors appointment instead. Navigating covid during these times also makes it extremely tough.

Thanks for checking in Angus. It is nice to know that once treatment starts, things move faster. My mom is just ready to fight and her pain seems to be increasing as time passes, so we are just very anxious to get things rolling.