Paulina
![]()
Posts:20
Hello, nine years ago I was diagnosed with BAC/adenocarcinoma stage IV. After having 63 rounds of chemo over the years I'm still doing quite well.
At the moment I'm having increasing symptoms. My disease has progressed slowly since my last Alimta in Nov 2016. I have had a 14 months break from treatment.
My doctor prefers Alimta, but I doubt if it will work any more once I have had progression while using it last time.
I understand from Grace videos that immunotherapy is excluded and afatinib has not been a great success for patients with Exon 20 insertion. It would be interesting to hear the latest news.
I'm grateful for any information,
Paulina
Forums
Reply # - January 24, 2018, 01:55 PM
Hi Paulina,
Hi Paulina,
I'm glad to hear you've done so well and hope you continue to do so. It's good to see someone with such a slow moving lung cancer who treated it as little as possible. I wonder if you can comment on how easy or difficult it was for you to let it be and treat only when necessary. Congrats!
There are several trial drugs that have shown real promise. We have a member Scohn whose wife has been on one or 2 or these trials with success.
Poziotinib is a trial drug with very encouraging data. The asco article discusses recent data and the clinical trial post is the trial being conducted in several locations across the US.
http://www.ascopost.com/News/58167
https://clinicaltrials.gov/ct2/show/NCT03318939?cond=nsclc+egfr+exon+20…
The completed trial on AUY922 showed enough efficacy to warrant more investigation though it appears there are none yet. I'm pretty sure Scohn's wife was on this one. I'll see if we can contact him to comment. This info is found, http://www.cancertherapyadvisor.com/iaslc-2017/lung-cancer-nsclc-lumine…
Here is a full list of trials, https://clinicaltrials.gov/ct2/results?cond=nsclc+egfr+exon+20&term=&cn…
All best,
Janine
Reply # - January 24, 2018, 09:01 PM
Hi Paulina.
Hi Paulina.
Sorry to hear of your progression. I can tell you a few of the things I have learned from my wife's treatments. She has an Exon 20 mutation in HER2 (a protein similar to EGFR, which is the mutation I assume you have). However, from what I have seen in the literature, some of the drugs that work on one Exon 20 mutation (HER2 or EGFR) also seem to work on the other since the proteins are very similar.
My wife has been on one trial drug so far, PF-06647020 from Pfizer, which worked very well for a year and a half. This is actually not a drug designed for Exon 20, but rather a drug designed for adenocarcinomas in general. It was a targeted drug designed to attach to, and kill, cells that exhibit typical patterns of adenocarcinomas. The clinical trial number for this drug is NCT02222922, and as of January 17 they were still recruiting patients, but lung cancer patients must be pre-tested for a high level of the protein (PTK7) that the drug is designed to recognize.
Another trial, for which my wife has been generally approved, but that she is not currently on (because her current drug regimen of Gemzar is still working) is a new inhibitor designed specifically for Exon 20 mutations in EGFR and HER2. It is a drug designed by Ariad Pharmaceutical (bought out by Takeda) known as AP32788. This clinical trial number is NCT02716116 and they are also currently recruiting patients. I believe they have completed the Phase 1 trials, and are now expanding to several new cancer centers to get patients to try and test for effectiveness.
When my wife found out she had HER2 mutation, she was approved for afatanib, but both her trial drug oncologist and her regular oncologist said it had not been working well for HER2, which is why they went t Gemzar, which has worked for my wife.
If you need any other information about either of these trials, please let me know.
All the best to you - sending thoughts of hope and healing,
scohn
Reply # - January 25, 2018, 07:45 AM
Dear Janine,
Dear Janine,
Thank you so much for all the information. I’m so happy and hopeful to learn about all the clinical trials going on at the moment for Exon 20.
I forgot to say that I live in Finland, but one of my grandchildren lives in Philadelphia with his family. Therefore, the trial for Osimertinib in Philly in May-July sounds very interesting. I wonder if non-US citizens can be recruited in these trials. Access to a clinical trial would be a priority for me. It seems that most clinical trials take place in US.
You asked about feelings. I participated in the clinical trial for maintenance Alimta from 2009 until 2012, getting a dose of Alimta every three weeks. When the trial ended, I felt abandoned for a while. My scans remained stable for two years during the first break, so gradually I started feeling safe and enjoying “normal” life. I trust that my doctor knows when it is time to start getting treatment again. However, I can’t help feeling uneasy knowing that my cancer is progressing. Luckily it has been slow growing and stable for long periods after the chemo sessions so far.
Dear Scohn,
Thank you for telling me about your wife’s treatments. It is amazing how drugs that are not actually designed for Exon 20 can prove effective. That’s how the pharma companies will be able to find new user groups for targeted drugs.
It is great that Gemzar is still working, and she has options if needed. I will ask my doctor if my Exon 20 mutation is also in HER2, so Gemzar might be worth trying.
Thank you so much for encouragement. Wishing best of luck for your wife for many more months with Gemzar.
With heartfelt thanks,
Paulina
Reply # - January 25, 2018, 10:47 AM
Hi Paulina.
Hi Paulina.
I am glad the information has been useful for you.
I just wanted to be clear that the AP32788 trial is a drug designed to treat both EGFR and HER2 Exon 20 mutations. In fact, when my wife went to discuss getting on the trial, the trial doctor said that almost all of their initial trial patients had been EGFR Exon 20 patients. They specifically are looking for EGFR Exon 20 patients as part of their trial, so there is no need to worry about that if you are interested in that trial at all. In fact, mutations in EGFR or HER2 are usually in one or the other, but not both.
Also, Gemzar is a non-targeted drug (much like Carboplatin or Cisplatin) and so also does not need to show any HER2 (or any specific mutation) for its use. It has worked well for my wife so far, with much less side-effects than Carbo. From what I have read it often seems to work fairly well on many tumors for which Carbo also proved effective.
All the best, scohn