Kadcyla Working!

Fri, 08/23/2019 - 11:59

My wife got her first CT scan back from the Kadcyla treatment.  Classified as stable overall!!  The lung remains the same - seems to be just small fragmented lesions at this point with nothing new or growing.  No new metasteses, and the liver is stable overall, everything looks about the same - one lesion decreased in size, one increrased a bit, but they think that might be due to the angle of the scan.

So, on with more Kadcyla treatments!!

JanineT Forum …

That's just great Scohn!  I hope stable last and lasts and your wife remains to feel good.  Your grandbaby is going to be a very lucky kiddo.


All the best,


Jim C Forum Mo…

Wonderful news, scohn! As Janine stated, I hope the response is long-lasting and side effects are minimal. 


Enjoy that grandbaby!


Jim C Forum Moderator 



Hi @scohn, so glad to hear that Kadcykla is working for your wife and the upcoming new addition to the family!  Being a grandparent is a new type of joy that is hard to describe!  

I am curious as to the treatment journey your wife has taken thus far that led her to Kadcyla.  I thought Kadcyla mainly targets HER2 and approved for breast cancer?  What was the context that led to Kadcyla?  


Hi Jim or Janine,

I am trying to understand using Kadcycla as a treatment for lung cancer.  From my quick research, it is used for breast cancer and focus on HER2.  Any insight would be great!


JanineT Forum …

Hi wadvocator,


I'm sorry I didn't respond sooner.  I thought scohn would have seen your post but he must be busy not needing us.  I very good thing!



EGFR exon 20 insertion have a HER2 component that is showing efficacy with HER2 targeted therapies developed for breast cancer.  Here is an article from uptodate that explains it in some detail.  A little less than 1/2 way down the article, "HER2 mutation — HER2 (ERBB2) is an EGFR family receptor tyrosine kinase. Mutations in HER2 have been detected using PCR or NGS in approximately 1 to 3 percent of NSCLC tumors [50-52]. They usually involve small in-frame insertions in exon 20, but point mutations in exon 20 have also been observed. These tumors are predominantly adenocarcinomas, are more prevalent among never-smokers, and a majority of these patients are women. For patients with a HER2 exon 20 insertion mutation who have progressed on chemotherapy, we suggest incorporation of HER2-targeted agents with next-line therapy, such as trastuzumab in combination with single-agent chemotherapy (vinorelbine or docetaxel) or ado-trastuzumab emtansine [53]. "


I hope you and your wife are doing alright.

All best,



Hi wadvocator.

Sorry for the delay in responding, but with my wife and I tag-teaming our flights to help out with the new grandbaby, we have been busy!

My wife has a HER2 Exon 20 mutation that appears to be the driver for the lung cancer.  It turns out that Kadcyla (formerly known as T-DM1) was a drug that showed some benefit for HER2 breast cancer patients, particularly with amplified (but not necessarily mutated) HER2.  I noticed about 2-3 years ago that a European Study looking at different treatments for HER2 mutation driven lung cancers showed some good benefit (much better than afatinib, herceptin alone, and some of the other targeted treatments).  So, when this last treatment began to stop working (my wife is on her seventh line of treatment) T-DM1 was on my list of things to ask the oncologist about.  But before I even mentioned it, he spoke about Kadcyla (which turns out to be the trade name of T-DM1).

My wife has been on several treatments that have been (at least for a while) effective: Carboplatin/Alimta, A trial drug targeting a surface protein Ptk7, Gemzar, Abraxane, and now Kadcyla.  Two treatments (Alimta alone, Opdivo) were not effective at all, and a trial drug TAK against Exon 20 mutations was only partially successful, with some severe side effects.

So, at least for the moment Kadcyla is working and other than the continuing neuropathy (from the Ptk7, Abraxane, and now Kadcyla) my wife is feeling good!

Feel free to let me know if there is any other information I can give you, or any other way I can be of help.

Best, scohn

In reply to by scohn


Hello scohn,

I was very interested in reading about your wife's dx and tx history. I have had a similar path, except I was diagnosed in 2018, and seem to have run through your wife's intitial treatments in just one year, I'm currently on Kadcyla (cycle 7 now), next scans are in January (fingers crossed). I too am a non-smoker, adeno NSCLC, HER2 Exon 20. I try to explain it as a breast cancer mutation in the lung (without being in the breast), very rare in lung cancers, but much more common in breast cancers. I have not yet met anyone with my actual diagnosis, I have met other women who are non-smokers with lung cancer but they don't have my actual mutation, and I'm only the fifth person with lung cancer to actually get this treatment at the cancer center. I've seen on other forums some patients have been on Kadcyla for three years. In spite of all the side effects, I hope to stay on it as long as I can, since all the other treatments were effective for only a few months before progression.


JanineT Forum …

Hi atothez,


Welcome to Grace.  I'm very sorry to hear about your diagnosis.  I know scohn will reply when he sees this.  I'll email if he doesn't respond today.  I don't think he checks very often. 


Will this be your first scan on Kadcyla?  I hope you get years out of it.  But there are also many ongoing clinical trials at which nsclc with her2 mutation are being studied. 


I'm curious Scohn, about what next options you and your wife are considering. 


Best of hopes,



So sorry to hear of your diagnosis.  Yes, HER2 is relatively rare mutation in lung cancer, I beleive about 1% overall, and about 4% of non-EGFR related NSCLCs.  As you might have seen from one of my other posts, Kadcyla kept most things stable, but the liver lesions began to increase after a few treatments so my wife is no longer on it.  My wife is currently on Keytruda, but currently on hiatus until some liver function enzymes go down.

We are not sure what is next, but we are keeping our eye out on Poziotinib, Pyrotinib, Tarloxotinib, and 8201A - mainly through clinical trials, but not all trials will allow for patients who progressed on TAK.  I am most interested in Tarlox, as it has the same targeted approach as TAK, but is designed to have far less side effects by selectively being activated in tumor cells.

I hope the Kadcyla works for you for a long time!  I know it can be nice to know there are others out there with the same mutation, and you are not alone, so please feel free to let me know if I can ever be of help in explaining any of our treatments.

All the best for holidays filled with warmth and light and laughter and love, scohn