1st Line Treatment – MEDI4736 + tremelimumab or Chemo or Others??

Portal Forums Lung/Thoracic Cancer NSCLC Stage IV NSCLC 1st Line Treatment – MEDI4736 + tremelimumab or Chemo or Others??

This topic contains 23 replies, has 4 voices, and was last updated by JimC Forum Moderator JimC Forum Moderator 3 weeks, 2 days ago.

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September 1, 2017 at 12:53 am  #1291348    


Hi All

First of all, my mom has recently past her one year mark from the date of diagnosis, which was out of our thoughts at the early days. I would like to think Jim and others for their support (both in knowledge and mental relief) throughout the year.

My mom has finished her last (6th) round of [ Paclitaxel + Carbo ] in end of July, and from mid Aug, she started to have infrequent cough again and the latest CEA test suggested a rise from ~2900 to ~3900, which is again near the level at her initial diagnosis (~4500). Our doctors at public sector stay on their previous suggestion to rest and even if a future scan confirm disease progression, they seems reluctant to provide further chemo treatment (of any type) and may consider palliative care only.

However, we just got an update from our previous mutation test for uncommon mutations that my mom’s was indeed having HER2 exon 20 mutation. From my understanding, there are no approved therapy specifically for HER2 mutated NSCLC patients, and there is no clinical trials for HER2 NSCLC in my area. Our doctor at private sector suggested to pursuit off-label treatment by T-DM1 or Afatinib if disease progression is confirmed. The doctor prefers T-DM1 as the results for a trial announced in ASCO 2017 suggested a better response rate and less side effects than Afatinib, but it seems the figures for both medicine are not representative due to limited participants in the trials.

September 1, 2017 at 12:54 am  #1291349    



My mom is still having good performance status (e.g. she can go up/down stairs and perform household work) so I think it may not be the time to give up cancer controlling treatments like the pubic sector advised. And it may be difficult to pursuit off-label treatment in public sector so we may need financing to have them in private sector. Do you have any information on my odds in having the below treatments? Is it possible to try one first and switch to another?

1. T-DM1
2. Afatinib
3. Gemzar (I noticed forum member scohn’s wife, also HER2 mutant, is going to have it)

Or is it a sensible choice to have palliative care only as she already had 3 lines of treatment so the chance of disease control does not justify the potential side effects any more?

Thanks again for all your support.

– Mike

September 1, 2017 at 12:38 pm  #1291354    
catdander forum moderator
catdander forum moderator

Hi Mike,

It’s my understanding that in the rest of the world drug prices are a small fraction of what they are in the US and T-DM1 and afatinib are probably too expensive to pay out of pocket. A call to the drug company can help figure out if you have private pay options. Gemzar is an older and much much less expensive (read, not under patent) drug that you may be able to talk your mom’s public onc into providing. It’s unusual today to find an oncologist who refuses 2nd line treatment to a person who is functioning as well as you say your mom is. If your mom is still willing and able to take 2nd line treatment there is no reason not to. I’d be very clear with the onc about that.

The following links are to posts about 2nd line treatment and maintenance vs waiting until clear progression. Many onc prefer to wait, giving patients time to rest and heal from the platinum doublet These oncologists believe the data aren’t accounting for the many who progressed to a point where they were too sick to withstand treatment, preferring to scan every 12 weeks or so to catch the cancer in time.



I hope this is helpful.
All best,

September 2, 2017 at 8:54 am  #1291360    
JimC Forum Moderator
JimC Forum Moderator

Hi Mike,

I completely agree with Janine in that, if your mom feels well enough to seek additional treatment, then absent a very strong reason given by her oncologist to the contrary, her wishes should be respected. One such reason might be that if the previous regimen has depressed blood counts, a treatment break might be in order to allow those counts to rebound. But that’s completely different than just stopping anti-cancer treatment completely.

Forum moderator

Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

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