Hi Grace community,
Thank you for the extensive information and great support on your website.
It seems that after 9,5 years I have developed resistance to Alimta, which has been the main reason why I have survived so long with stage IV BAC Adenocarcinoma. Now I am at a crossroads thinking what next. Cancer has progressed in my lungs, but I'm still doing quite well.
According to my doctor Tarceva and Iressa are not recommended for Exon20, and Giotrif (Afatinib) might be harmful for my type of mutation (S768-D770 duplicate). Instead of targeted therapy my doctor would prefer immunotherapy. In my case only Tecentriq (Atezolizumab) could be used, because I have not been tested for PD-L1.
Judging by the panel discussion regarding immunotherapy for patients with EGFR I am not willing to choose Tecentriq at this point, but I am also worried if Giotrif would only make my disease progress faster.
I can't participate in the clinical trial of Poziotinib for EGFR Exon20, because I live in Europe.
Perhaps I have not used all my chemo options yet. So far I have had 4 rounds of Cisplatin-Alimta, 4 rounds of Carboplatin-Taxol, and 59 times maintenance Alimta.
I would appreciate hearing any ideas or experiences about my type of lung cancer.
Thank you in advance,
Sun, 09/23/2018 - 10:20
I'm so sorry you have to look for a new drug. I get the impression you've read and listened to a lot of what Dr. West has to say about BAC. Just in case you haven't you might want to search "BAC" and read up on what he has to say on the subject. For the most part treat only when necessary, BAC can be extremely slow growing so when progression is slow moving you may not need to treat right away. Watching the slow progression I know is difficult but may lead to longer use of beneficial anti cancer meds, however that should be judged by an oncologist who has first hand knowledge of your situation. A 2nd opinion may be an option if your onc isn't a lung cancer specialist. Other chemo drugs often have efficacy after another has stopped working, especially for someone who has done well on another chemo (responders respond). Immunotherapy is another option. A combo of immunotherapy and chemo has been shown to be efficacious but it does tend to cause more symptoms than single agent.
With BAC, when it's slow growing it's possible to use a treatment to beat back growth then break until needed again. This way you don't become resistant to the treatment as quickly. Too there are some people for which immunotherapy continues to work long after treatment has stopped. We don't understand who or why yet but that may make stopping after a good response easier. Even if an immuno/chemo combo isn't approved where you are most chemo are now cheap especially compared to other anti cancer drugs so you may be able to get it approved even though it may not be approved.
The link below is the newest of Dr. West's posts on BAC. (You may need to highlight the link, right click and choose 'go to' to open until we get that fixed)
I hope you do very well,
In reply to Hi Paulina, by JanineT Forum …
Mon, 09/24/2018 - 21:37
Thank you so much for your kind words and all the information. I have read and listened with great interest to everything that Dr West has published about BAC. I'm very grateful for the information he has provided us with, since other doctors don't even call this lung cancer BAC any more. Naturally EGFR Exon20 S768-D770 duplication is a more accurate definition, but my disease has all the typical features of BAC. It has been slow growing, it spreads within the lungs, it produces phleghm. Due to exponential growth of cancer cells my lungs are getting filled with tumors. I was able to have long breaks from treatments, but now I would need something or it will be too late. My pulmonologist is a lung cancer specialist, but the problem is that all novelty therapies are not accessible for patients in my country, e.g. Tagrisso. There are no clinical trials for Exon20 in Europe. I'm quite desperate, because my symptoms are worsening day by day. SOB, coughing up mucus all the time. It is discouraging to know that immunotherapy is not recommended for patients with EGFR, which does not leave other options than chemo. I understand that also an immuno/chemo combo would be risky for EGFR patients. I wonder if other chemotherapy drugs, such as Taxotere, could work after there is resistance for Alimta.
Thank you once again for your caring and kind assistance,
Tue, 09/25/2018 - 07:58
Hi Paulina, Although targeted therapies and immunotherapy are the newer treatments which get much of the publicity, many patients still get excellent benefit from traditional chemotherapy, as you have from Alimta. And it's typically stated that "responders respond", meaning that patients who get a good response from one line of chemotherapy will tend to respond to a subsequent therapy. Having used both Taxol and Alimta, Taxotere (docetaxel) would likely be the leading candidate as far as chemotherapy, since it has been studied in this context more thoroughly than any of the other options, and even though it is a taxane like Taxol, the evidence shows that it can be effective even after using Taxol. Having said that, it's also true that patients can derive benefit in this context from other chemo agents such as gemcitabene (Gemzar) and vinorelbine (Navelbine). In addition, compared to immunotherapy, chemotherapy can be effective much more quickly, an advantage if your symptoms are worsening relatively rapidly. Good luck with your next line of tretment. Jim C Forum moderator
Tue, 09/25/2018 - 08:11
Paulina, Although perhaps the latest options for Exon 20 patients are not available in your country, that may happen in the future, so if you'd like to keep up with developments, there is a patient group here: http://www.exon20group.org/ And some further links and presentations from last year's patient forum here: https://cancergrace.org/post/targeted-therapies-lung-cancer-patient-for… It wouldn't be a bad idea to periodically check clinicaltrials.gov to see if there are any new trials in your location. Jim C Forum Moderator
In reply to Targeted therapy for Exon20 by Jim C Forum Mo…
Wed, 09/26/2018 - 11:18
Thank you Jim for the very informative responses. I agree with you on the importance of chemotherapy, which may be more effective and less risky than the new therapies.
Thank you also for the links. During the (almost) ten years of my lung cancer journey the last few years have made a huge difference in the treatments and also in the attitudes towards lung cancer. We are worthy of new medications.
Advances in targeted therapies for genetic mutations are changing lung cancer into many rare diseases. I hope cross-border enrollment and international clinical trials will become more common in the recruitment of participants with uncommon mutations.
Thank you Jim and thank you Grace! You make a difference in the lives of cancer patients and their families.
Tue, 09/25/2018 - 08:27
Other chemo drugs used in nsclc are: Gemcitabine (Gemzar)
This is a partial list that includes drugs you've not mentioned you've used from https://www.cancer.org/cancer/non-small-cell-lung-cancer/treating/chemo…
With the exception of vinblastine (maybe my memory deficit) Dr. West has discussed these drugs as being used as a single agent in later lines of treatment with often good effects. They are less known to us and used less by oncs probably because they are of the older groups. But they work. Gemzar and navelbine are the ones I see most often on Grace (both used by my husband, navelbine with carbo and gemzar alone). I recall Dr. West talk about about camptosar usually used in sclc but a good option for later lines in nsclc as well. You may be able to use them to good effect and they should be available to you immediately.
Tue, 09/25/2018 - 10:17
Here's a link to last wk/end's IASLC conference's virtual library with abstracts now available (the search criteria was exon 20), https://library.iaslc.org/search?author=&category=&date=&session_type=&…
In reply to Here's a link to last wk/end by JanineT Forum …
Fri, 09/28/2018 - 12:27
Thank you Janine!
I had no idea that there are so many kinds of good old chemotherapies that I might still try, because all recent articles and studies are related to the new therapies. I also found useful information in the IASLC virtual library. Thank you for sending me the link with the latest studies about this type of lung cancer. You have been of great assistance and encouragement by bringing more options to choose from at the crossroads of various treatments. Forever grateful,
Sat, 09/29/2018 - 09:18
It's so good to hear we're still helping. :) It's very possible you can tamp down the cancer with chemo while trialists everywhere work out a workaround for exon 20. You are aware that exon 20 in both egfr and her2 are very similar and it seems that the same drugs are benefiting people with either? So keep a lookout on both.
All the very best,
Mon, 03/18/2019 - 19:16
Hi Paulina. I was wondering what treatment you decided to try. My uncle is also a EGFR Exon 20 patient. Carbo/Keytruda/Alimta is no longer working and today we were told poziotinib is not accepting patients who have had the carbo triplet, and TAK-788 is also not an option. The oncologist at NYU was pushing JNJ-372 (JNJ-61186372) (Phase 1) and we are also looking at the tarloxotinib trial in DC (Phase 2). It's hard to choose between these trials and the traditional chemo route. Can you share your experience?
Tue, 03/19/2019 - 11:13
sch1979, I think you meant Pauline? I haven't been a patient though my husband was diagnosed 10 years ago this year. I hope Pauline will respond. (I'll change that for you if you'd like).
This is the or a clinical trial that's testing JNJ-61186372 https://clinicaltrials.gov/ct2/show/NCT02609776
It appears there is some early data (first 35 patients tested) showing some efficacy in egfr mutation in the following abstract from JTO there isn't data specific to exon 20. https://www.jto.org/article/S1556-0864(18)31249-8/fulltext
There may be issues with getting to the location though especially since the researchers want to keep a close eye on their patients with multiple visits. Ask others such as the exon 20 group and the LCSM twitter group for tips on managing logistics of participating in a trial out of town. There has been quite a bit of patient/caregiver work done trying to overcome the complexities of being in a trial away from home.
Chemotherapies including gemzar, abraxane (and other taxanes), etoposide among others have been used with sometimes months of benefit.
In reply to sch1979, I think you meant by JanineT Forum …
Tue, 03/19/2019 - 18:16
I’m sorry, I meant Pauline. Thanks for the links Janine. JNJ-372 is close. We are in NJ and it’s at NYU. I’ll check out the Twitter account. I’ve spoken with Marcia and Exon 20 Group (she is amazing).