Update

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scohn
Update

Hi everyone.

I haven't been on in a while and just wanted to keep you all updated.

My wife is still on Enhertu and it has been great, continual decrease in size, until about 2 months ago when the results seemed to be mixed.  Everything was good (decreasing or stable) except for two lesions that seemed to be growing in her liver, but they were in a peripheral, accessable place, and so they did some microwave ablation on them.

Well, she just had her latest CT and again the results are mixed.  We first got the brain CT portion results back and we were elated - all of the brain lesions continue to decrease in size, many are negligible, and a few are now undetectable (at least at the CT level).  However, later in the day we got the liver results - many of the lesions are now beginning to increase in size.  A couple are decreasing, but those are the ones treated by the ablation.

So, we are once more in that place we have been before, where the results are mixed.  We will know more once we talk to the oncologist on Monday (and the restirctions are now lifted enough that I can actually go in with my wife!).  Once more into that anxiety whirlwind of wondering how long this Enhertu will last and if it stops, what will be next.  I am sure  given the great results on the brain lesions she will be able to stay on it for a while still (she is on the drug via expanded access/compassionate care), but I know the oncologist is really concerned with the liver.

But, at the very least, her liver is back to where it was about a year and a half ago, and likely several months away from any liver crises - even if the drug completely stops working, which does not seem to be the case yet.  Her next CT, whenever that is some weeks from now, along with any changes in the liver enzyme and chemistry blood tests over the next few weeks, will be the telling part of which way things are going.

And she is now fully vaccinated!  Who knows, perhpaps the vaccine interfered with the last chemo and all is still good.

Anyway - day by day - we still cherish each moment together.  And our days with our children and grandson.

 

JanineT Forum M...
Hi Scohn, Scans are like a

Hi Scohn, 

Scans are like a box of chocolates, you never know what you're going to get.  I hope that reference isn't too old...forest gump?  I wish the news was all good but there is a lot of good in them.  I think I'll hang my hopes on the vaccine being the culprit. 

Thank you for keeping us posted and I'm thankful you and she are living and loving life each day with each other and your daughter's little family.  And thank goodness for the vaccine!  I just got my husband an appointment last night at midnight, walmart opens the appointment window 7 days in advance every night.  It's almost hard to dislike walmart as much as I do. 

All the best,

Janine

scohn
Continuing Update

Well, still in a kind of limbo.  The meeting with the radiologist confirmed the lesions that were treated did decrease, but most of the others have increased.  SHe is looking into a trial at U of CHicago, but the liquid biopsy testing for one form of genetic restance was negative, so she is not eleigible for the one trial.  She is going through a Foundation physical biopsy this Friday to see if there is any information on other mutations which might be relevant.  So - not sure what next step is at this point. We should know in the next week or two.  Luckily, other than some fatigue my wife is feeling pretty good! 

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6/15 6x Carbo/Alimta; effective. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial; ineffective. 10/18 Abraxane; effective. 7/19 Kadcyla; effective. 10/19 Carbo/Alimta/Keytruda followed by Alimta; ineffective. 4/20-Poziotinib; effective. 7/20-4/21 - Enhertu. 4/21-?? ZW49 trial.

JanineT Forum M...
Hi scohn, I'm sorry there is

Hi scohn, I'm sorry there is progression and so glad there is no progression in the treated spots and she feel pretty good.  I hate she has to have a biopsy but hopeful they'll find something that can be targeted.  I'll keep my fingers crossed. 

Sencerely,

Janine

scohn
On to something new!

Turns out the ISH staining showed HER2+ overexpression, so she qualified for the ZW49 trial.  So, once more onward to a new drug! (It's similar to Kadcyla -directed directly to HER2).

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6/15 6x Carbo/Alimta; effective. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial; ineffective. 10/18 Abraxane; effective. 7/19 Kadcyla; effective. 10/19 Carbo/Alimta/Keytruda followed by Alimta; ineffective. 4/20-Poziotinib; effective. 7/20-4/21 - Enhertu. 4/21-?? ZW49 trial.

JanineT Forum M...
My fingers are crossed SCohn

My fingers are crossed SCohn that this drug is easy on her system and works well at killing some cancer.   Big hugs all around.

scohn
Alas....

So my wife went to the first round of screening tests this last Tuesday and they said her bilirubin level is too high to be accepted for the trial.  The checked to see if a liver stent was possible to increase flow and function, but that was also a no.

So, we should know soon the next path to take, but it will likely be abraxane/ramucerimab.  As we also work to get Tarlox available under expanded access.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6/15 6x Carbo/Alimta; effective. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial; ineffective. 10/18 Abraxane; effective. 7/19 Kadcyla; effective. 10/19 Carbo/Alimta/Keytruda followed by Alimta; ineffective. 4/20-Poziotinib; effective. 7/20-4/21 - Enhertu. 4/21-?? ZW49 trial.

JanineT Forum M...
I hate to hear that she isn't

I hate to hear that she isn't able to join the trial and hope she can save the chemo for later.  I'll have to look up tarlox I'm not familiar but you've already introduced me to several new drugs these past...couple? of years.  How much do you dislike hearing, hang in there?  Because I want to say it but won't, kinda.