Hi People,
Have had previously few posts about my mothers, NSCLC adenocarcinoma treated by now as it follows:
1. Tarceva in a study for 11 months until progression has been registered
2. Alimta + Cisplatin for 9 months until progression
3. Navelbine (Vinorelbinum) - first pretty hard to tolerate the pills, while further on getting it through injections. The Navelbine cure is running since one year already and with the last CT occasion it has been registered a small progression, but doctor decided to continue Navelbine for now.
What worries us, though is the fact the doctor seems to be puzzled of what is going to happen if Navelbine will prove ineffective after a while and she claimed she left out of other options.
It was a discussion about one study with a new medicine, but that study doesn't seem to become available in Romania, where we are based, pretty soon.
Could you please pinpoint some of alternative in case Navelbine cure fails at some point based on some other patient patterns (if that is to call a pattern)?
Thanks in advance!
Best regards,
Adrian
Reply # - August 6, 2015, 03:51 PM
Hi Adrian,
Hi Adrian,
There certainly are additional treatments available, including Taxotere (Docetaxel) another proven drug in the second and later line context, as well as clinical trials of new EGFR inhibitors and immunotherapies. You can search for open trials in Romania at clinicaltrials.gov Although it is a service of the U.S. National Institutes of Health, it provides listings for clinical trials around the world.
In the meantime, best wishes for continued success with Navelbine.
JimC
Forum moderator
Reply # - August 6, 2015, 09:37 PM
Hi Jim
Hi Jim
First of al congrats for your hard work with Grace! I find it very useful.
Thanks for the answers you provided me already.However I would have few more questions:
Could you please name some of the new thyrosine kinase inhibitors that are on trials now? It would help me to nail down my search.
Also can you please point me to some immunotherapies and where to look for such treatments?
Thanks so much in advance
Adrian
Reply # - August 7, 2015, 07:51 AM
Hi Adrian,
Hi Adrian,
Thank you for your kind comments. Each of us who contribute to the GRACE effort are committed to patient education, and many of us personally have seen the benefit such assistance can provide.
Among the most prominent TKIs being tested are C01686 and AZD9291, which Dr. West discussed here. The links at the end of his post should prove helpful as well.
As far as immunotherapies, Dr. West discusses these, including two of the leading candidates, Opdivo (nivolumab) and Keytruda (pembrolizumab), and some others in this post.
Dr. West also wrote these two posts, which serve as a primer on immunotherapy:
http://cancergrace.org/cancer-treatments/2014/12/30/what-is-immunothera…
http://cancergrace.org/cancer-treatments/2014/12/30/how-is-immunotherap…
There is also a series of videos from the GRACE patient forum on immunotherapy, which you can find here.
This is just the tip of the iceberg as far as the information available here. If you search for "third generation egfr" or "immunotherapy" you will find plenty of links with good information.
JimC
Forum moderator
Reply # - August 9, 2015, 08:34 AM
Hi Jim,
Hi Jim,
Very much appreciated your reply.
Just one more piece of information I would request you, please to provide regarding the clinical trials recruiting patients:
How a patient can get in touch with someone who is the trial leader of one such trial? I have tried few times to contact someone being the contact person, but without luck.
Would the request should come from the actual oncologist?
I would really be grateful for any useful pointers on this regard.
Thank you very much indeed!
BR,
Adrian
Reply # - August 9, 2015, 10:02 AM
Hi Adrian,
Hi Adrian,
At the bottom of each listing on clinicaltrials.gov there is a contact person listed, usually with both a phone number and email address. If you've tried to call such a phone number without success, I would try email. If you see a local cancer center listed as one of the trial locations, you could also try calling that cancer center directly to inquire about the trial. If you're still having trouble, then perhaps your oncologist could make the contact for you.
JimC
Forum moderator
Reply # - August 13, 2015, 09:16 PM
Hi Adrian,
Hi Adrian,
My mother is in quite the same situation, in the same country.
Unfortunately there are no trials for third generation TKI's running in Romania which apply to your mom. In US, there is a program for compassionate use of AZD9291, however there is no such thing in Europe.
ClinicalTrials.gov usually contains contact information for US. For Nivolumab, I'm not sure that the study still recruits participants.
https://clinicaltrials.gov/ct2/show/NCT01673867?term=nivolumab+lung&cnt…
If you want to contact BMS, best is to write an email to an address you find on their global site.
All the best for you and your mother!
Reply # - August 18, 2015, 10:38 PM
Hi
Hi
Thanks all for the information provided.
Now, regarding the immunotherapy, this is something new for me and will have to assess the information.
As for the compasionate program for AZD9291 does that run through Astra Zeneca staff or 3rd parties?
@Costica:based on the history of your mother's disease, it looks like she is still on Tarceva?
Could you please get in contact to tell me how did she get it?
In our case, apparently Tarceva is no longer an option as we are already close to the 4th line of treatment.
An option would be a trial to prove it effective after an initial line of treatment with Tarceva after progression has been recorded and subsequent chemotherapy.
Another trial I was hoping for is TIGER 3 for Rociletinib, but mailing Prof Edgar Smit who runs in Netherlands, he replied mom would only be in the inclusion criteria if it was under Tarceva and recorded progression.
So Professor's recommendation was to try Tarceva again in case Vinorelbinum fails at some point as it proved effective on more than 50% of the patients. Thereafter if progression to contact Professor for TIGER 3 inclusion.
If you came across any trial for Tarceva as a second attempt after initial failure I would appreciate sharing the information.
Thanks in advance
Adrian
Reply # - August 19, 2015, 06:26 AM
You don't say if your mother
You don't say if your mother was tested for EGFR, and that is a crucial information.
Reply # - August 19, 2015, 07:07 AM
Hi,
Hi,
Yes, as a matter of fact, we have had to do the genetical EGFR mutation test before my mother was put on Tarceva as a 1st line (in 2012).
That revealed that she's got the mutation which proved later Tarceva was effective in the first line.
Now, as said, we are assessing the possibility to access one of the newer generation TKIs (either Rociletinib or AZD9291) and for that we were having a new genetical test to see if she acquired T790M mutation.
As far as I understood, if she's got that mutation, new generation TKIs won't prove effective. Is my understanding correct?
Thanks
Adrian
Reply # - August 19, 2015, 07:48 AM
My mom receives Tarceva
My mom receives Tarceva through the system. Her doctor had to complete some forms, and a central authority (national health state insurance) approves it every 6 months (based on CT reports). She has received Tarceva since january 2013.
The third generation TKI's apparently work great in patients with acquired T790M mutation. That means a new biopsy. It doesn't make (too much) sense to obtain a new biopsy (which may be hard, depending on location) if you are not enrolled in the trials you mention. And those trials are not in Romania.
As far as I know, the compassionate program for AZD9291 is only in US. So, why do you care how it is run? Can your mother go to US?
Reply # - August 26, 2015, 12:09 PM
Hi Costica
Hi Costica
Would like to clarify few points:
1. I am still not clear if 3rd generation TKIs work if patient acquired T790M mutation or the other way around?! I am asking because we are waiting for the result of the genetical tests for the EGFR mutation (post Tarceva).
2. As for the 1st generation TKI rehearsal, I could only found Irene, which is a trial running in Holland and the answer from the doctor running the trial was that preferably patient should be from the Netherlands and suggested we better look for an option of having again Tarceva (erlotinib).
As for the US compasionate, it is indeed hard to travel for so long,but as I understand the 3rd generation TKIs are provided as pills (as Tarceva is) and it would require monthly doctor visit.
Anyhow, Costica,would you please share with me the name of your mother's doctor either here or on private (adrianm21@yahoo.com).
Looking forward to your feedback
Thanks
Adrian
Reply # - August 27, 2015, 09:19 AM
Third generation TKI's are
Third generation TKI's are recommended in the case of acquired T790M mutation. That is approximately 60% of the patients who progress after a TKI like Tarceva.
See this article. There are many more resources here, I did not have time to find all.
http://cancergrace.org/lung/2014/03/09/new-agents-for-acquired-resistan…
Reply # - November 9, 2015, 12:06 PM
Hi everyone
Hi everyone
Just a piece of update: last CT my mother did on October showed progression and her doctor decided to eventually stop the treatment. As a follow-up she agreed to apply for getting Tarceva from governmental program.
As far as I understood from this forum and not only there are unanimous opinions about the benefits of having Tarceva or any other 1st generation TKI after an initial treatment and progression and chemotherapy in between.
Looking forward to your feedback
Thanks
Adrian
Reply # - November 11, 2015, 04:05 PM
Hi Adrian,
Hi Adrian,
If the T790M mutation has developed, the preferred choice would be a third-generation EGFR TKI, but if it's impossible to obtain it, there is some limited evidence that after a good response to Tarceva followed by chemo, there may be some benefit to revisiting Tarceva. It's not likely to be as effective as it was the first time, but it may help bridge the gap until a third-generation TKI becomes available to you.
JimC
Forum moderator