My husband was first diagnosed in 2014 with NSCLC . Stage1b with possible invasion of pleural lining. Rt upper lobe lobectomy 2014 with 3month of Chemo - Cisplatin and vinorelbin. He did a 1 year clinical trial of an immunotherapy PDL1 inhibitor. In 2018 he had a segmentectomy of Rt lower lobe for a growing nodule. A new primary cancer with an EGRF mutation. Lymphs were negative. After surgery, again on a clinical trial of the use of anticoagulant after lung surgery, a clot was discovered. In a CT to see if the clot was resolved 3 months later, the radiologist reported 2 new nodules in the right lung and 1 in the left lung along with enlarged lymph node, likely metastatic disease. EBUS revealed 1 positive node and MRI showed a 1.5mm possible brain met. The lung nodules are too small to biopsy. My husband feels totally well, no symptoms and if it was not for that clinical trial we would be none the wiser. Our oncologist has started him on AFAtinib and radiation oncologist is waiting 6-8 weeks to see what effect the drug has on this ?brain met. First week of AFAtinib was rough but he is now tolerating the drug well
I just watched DrWest's video on the use of AFAtinib in combo with chemotherapy and it seems to give a pronounced improvement in the initial Progression Free time. 11mons vs 20mons with the combo.
Should I bring this study to the attention of the oncologist, who we like and trust? My husband is just in the first month of treatment and tolerated chemo well the first time. I don't know if this combo approach has been tried here in Canada and we have yet to get government approval for the cost of AFAtinib, but that is only a matter of paper work. The new third generation of the drug has not yet been approved and I understand it has better brain penetration.
My husband is not as aware as I am about what he prognosis maybe and he has not made any attempt to ask, so that puts me in an awkward position if discussing # of mons.
Any suggestions?
AFAtinib as first line treatment - 1294926
lablady
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Reply # - July 24, 2018, 03:55 PM
Hi Lablady,
Hi Lablady,
Welcome to GRACE. I also saw the video by Dr. West here: http://www.oncologytube.com/video/is-chemo-the-key-to-the-best-combinat…
and am also in Canada, stage Ib and did the cisplatin/vinorelbine adjuvant too.
I would ask your oncologist about the study's result and if he or she could give concurrent chemo with afatinib at this point in your husband's treatment. I would bring it up with my oncologist if I were in a similar position.
There is also the possibility down the line to get third generation Tagrisso by making a request to the manufacturer to pay for it. I think a person can get this after previous TKI treatment if they end up with the T790M mutation in Canada. Tagrisso has been approved by Health Canada for lung cancer but none of the provinces currently fund treatment with it. I have, however, read on inspire about lung cancer people receiving Tagrisso this way in Canada.
Reply # - July 24, 2018, 07:16 PM
Onthemark,
Onthemark,
Thanks for the quick reply. The one thing about Grace, it lets you know you are not alone!
Thanks also for some tips on how to talk to our oncologist. Our next visit is in two weeks. I will bring up the study to her in general term and try not to be specific about prognosis as I don't think my husband wants details because clinical he feels totally well. That puts me in an awkward spot. I want the best chance for him but do not want to raise doubts about his treatment plan if it is his best option.
We don't know what specific EGFR mutation he has, but I will try to get that info at the next visit.
I had not heard about Tagrisso. So that is something I will look into if he has the T790M mutation.
If I understand the study NEJ 009 , it was done using gefitinib , which is a first generation drug. AFATINIB is a second generation drug. Osimertinib is the third generation, which is used in USA , but not yet approved in Canada. I checked on the net, but could not find anywhere in Canada where the combo therapy was being done.
We are located in Hamilton, Ontario and are very lucky to have an excellent Cancer center right here in the city. That makes treatment a lot easier.
Reply # - July 25, 2018, 09:01 AM
Hi LabLady,
Hi LabLady,
That's a delicate situation with your husband. You know him best and no one on the internet can really give you advise.
Just to clarify Osimertinib and Tagrisso are the same third generation drug and was approved by Health Canada in 2018 for lung cancer.
"AstraZeneca Canada announces that Health Canada has granted full approval (Notice of Compliance) for Tagrisso® (osimertinib) for the treatment of patients with locally advanced or metastatic epidermal growth factor receptor (EGFR) T790M mutation-positive non-small cell lung cancer (NSCLC) whose disease has progressed on or after EGFR tyrosine kinase inhibitor (TKI) therapy. "
https://www.newswire.ca/news-releases/tagrisso-osimertinib-receives-ful…
None of the provinces will pay for it yet though, but it is possible to get in case of progression on Afatinib, so you do have another TKI backup down the line (in case the resistance mechanism that develops is T790M) rather than just chemotherapy.
Reply # - July 25, 2018, 09:21 AM
Hi LabLady,
Hi LabLady,
As onthemark stated, you know your husband well and are in the best position to judge how he might react to such a discussion. From my own experience with my late wife's lung cancer, there was just one discussion with her oncologist in which he mentioned that a certain regimen had provided a significant improvement in overall survival, three months. Her reaction to the concept of three months being something to get excited about was immediate and obvious to both me and her oncologist, and we never spoke of time frames again.
So perhaps you can bring the study results to the attention of your husband's doctor by providing him/her with a link to Dr. West's video and referring to better results without including references to time frames.
JimC
Forum moderator
Reply # - August 17, 2018, 08:53 AM
Thanks to all the suggestions
Thanks to all the suggestions from Grace I was able to approach our oncologist with regards to the NEJ 009 study and she was happy to discuss it with me and handled it very discreetly so that my husband came away from the appointment feeling very good with his decision to start the AFATINIB.
She explained to us that Asian people who have EGFR lung cancer do significantly better on chemotherapy than North American and European populations anyways, therefore combining an EGRF inhibitor with chemo as a first line treatment would not necessarily produce the same positive advantage that the NEJ 009 study did. She said no one in Canada is using that method and her recommendation remains the same.
We also received approval from the Ontario government to have the cost of the drug 100% covered by the Provencial Health Plan. At $3000/ month , we are very thankful.
One of my big concerns about starting AFATINIB now was that my husband had no symptoms at all . He is a very young and fit 78 year old. The eight pages of side effects was very scary .However, after a rough first week, the side effect have been minimal and very easy to manage. Blood work has remained very good.
We have a CT scan Sept 4 and a brain MRI Sept21. So we will know then just what the AFATINIB is doing after 2 months of treatment
Thank you Grace for the support and the information you provide to the lung cancer community. It is the very best resource that I have found and I found it by accident while checking out our Oncologist who had made a video / pod cast for the web site.
Reply # - August 17, 2018, 02:19 PM
Hi lablady,
Hi lablady,
That's great news that your husband was able to start Afatinib and is tolerating it well now. I hope you see terrific results on your upcoming CT and brain MRI next month!
It's also super that your oncologist participates in GRACE. What a way to find out about the site.
Reply # - August 17, 2018, 08:12 PM
Hi lablady,
Hi lablady,
It's good to hear that the discussion with your husband's oncologist went well, and even better that the side effects from Afatinib have been so manageable.
We will look forward to your report on great scan results next month!
By the way, my wife's oncologist has also contributed his expertise to the GRACE site. He knew Dr. West, and I think our reports of the good work he was doing helped influence his decision to help. We've met a number of the GRACE faculty, and they truly are incredibly dedicated, caring people.
JimC
Forum moderator