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 26 replies, has 4 voices, and was last updated by  mikelauwy 9 months, 1 week 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

October 10, 2017 at 3:57 pm  #1293293    


Hi Mike.

It’s been a busy moth, so I didn’t see this post until now. I will post the results of our latest CT scan (my wife took one today) as soon as I know it, but I just wanted to mention a couple of things.

When my wife was removed from the trial study for the PTK7-targeted drug, both the trial oncologist and our regular oncologist said that in general they had not been seeing very great results with the afatanib, and had a lot of side effects with it, so it is still a possibility, but we are holding off on it until later.

I also saw the ASCO results for T-DM1 against HER2, and will likely ask our oncologist about it sometime to see if it could be one of our future choices.

The Gemzar has seemed to be very mild in side effects, EXCEPT phlebitis. My wife’s arms are now both sore from the Gemzar treatments, one arm several days ago and the other arm about 10 days ago. She puts warm compresses on both arms each night for a while which seems to help, but it has seemed to help with the hip pain, so we hope it is working.

As for lines of treatment – my wife is currently on her 4th (or 5th) line of treatment (depending on if you consider the Alimta maintenance a separate line or not) and we know of at least two approved drugs and one trial drug that are available in the future if this line doesn’t work. I agree with Jim and Janine, as long as reasonable treatments are available, and your mother wants to do it, I would hope they would support her.

But most of all I wanted to send my hugs, and thoughts, and prayers for your Mom and your entire family.

All the best, scohn

Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 Gemzar- tumor reduction, then stable.

October 12, 2017 at 8:20 am  #1293310    


Hi Scohn

Many thanks for your input. And it’s good to have virtual hugs from patients and care takers sharing the same sub-type of cancer. My mom was always asking different doctors and oncologists if she was the only one having this HER2 mutation NSCLC in the whole city/state. I’ll let her know you as it counts knowing there are others in same situation striving to survive.

It’s be a while and my mom’s CT scan done in mid-Sep has confirmed disease progression, which is what we expected given her worsening cough and reduced appetite. We agreed with the doctors at private sector to put her on Afatinib, and she started on 5 Oct, with 30mg per day as starting point and switch to 40mg at end Oct if the side effects are tolerable. She is having diarrhea starting from the 4th day, and mild rash since today, which both are tolerable and can be treated with medicine. But what affected her most was the inflammation in the mouth and tongue since yesterday, which further affected her appetite. We need to find soft/liquid food for her.

But disease-wise she herself feels having more energy, and we feel her cough has sightly reduced. We are not exactly sure if it’s the Afatinib taking effect. I have also found this report for a previous trial on Afatinib and the first case in the report match the exact same HER2 mutation subtype of my mom. Perhaps it’s really helping despite a worse side effects portfolio. This was what our doctor at private sector were suggesting, that if a drug in theory can target a specific mutation, it’s worth having a try if your body can affort. I believe Afatinib may also help your wife.


October 12, 2017 at 8:32 am  #1293311    



Talking about Gemzar, before we start on afatinib, the oncologists at public sector has suggested Gemzar as their only available option, but they were asking if we decided to continue treatment and it seems they don’t have much confidence that Gemzar can really help. But it’s relieving that for your wife it’s well tolerated and seem to help with the disease (hip pain).

May I thank you for your support again and also I would like to share my thoughts and prayer to your wife and your family as well, hoping the current medication could be effective for both of us.

Best wishes,

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