Mixed Results from Treatment

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sch1979
Mixed Results from Treatment

Has anyone had mixed results from chemo/immunotherapy?  My uncle was diagnosed with stage iv nsclc (exon 20 mutation).  It has spread to the bones, lymph nodes and adrenal glands.  He did 6 rounds of chemo with immunotherapy (alimta/keytruda/carbo) and then continued with keytruda/alimta.  We just received his first PET and brain MRI results since his initial diagnosis and while some of the cancer shrunk, some grew and there are new lesions not seen in April. The oncologist said not to be alarmed and wants to continue immunotherapy and re-test in three months.  Is that a typical response/course of treatment for mixed results from chemo? I'm very concerned about the new growth.  

 

JanineT Forum M...
Hi sch1979, Welcome to our

Hi sch1979, 

Welcome to our new site.  I'm sorry to hear about your uncle.  It's not unusual for there to be mixed results to treatment.  However, if it's been 8 months since his last scans at diagnoses it would be difficult to say what happened when.  It could be that there were already new mets on the horizon (already growing but not large enough to pick up on scans) when first diagnosed.  It's typical to follow someone's treatment with CT scans every 3 months or so which gives you a better idea of what's happening during what treatment.  Except in special situations PETs aren't really going to tell his onc anything a CT can't and the CT is much cheaper.  

If your uncle isn't suffering worsening symptoms then there would be no reason not to continue with keytruda however the overwhelming majority of people with an egfr mutation don't respond to immunotherapy alone which is why most would continue with a combo with alimta and immunotherapy (as long as the side effects are manageable).  There are many promising treatments in trials for those with a mutation in exon 20 all over the world.  Below is a link to a group specifically for connecting and sharing information about exon 20 both egfr and her2 (both of which often respond to the same treatments).  A Grace member, scohn is very much tuned into what's happening in this area for his wife has a mutation in exon20.  If he's available he is very knowledgeable and responsive so you can send him a message from your dashboard.  

http://www.exon20group.org/

I hope your uncle does well.

All best,

Janine

scohn
Some Thoughts

Hi sch1979.

I am so sorry to hear about your uncle's diagnosis.  As noted above, my wife has NSCLC with a HER2 mutation, which is very similar to the Exon 20 mutation in EGFR (in a different but related protein). I agree with Janine that we found the Exon 20 Group very helpful -  they have a lot of information about both current and developing treatments for Exon 20 mutations.  They may have some suggestions on things to talk about with your oncologist.

As for mixed results in chemo, we have definitely had that.  In two cases a line of treatment did great in the lung and nothing for the liver tumors.  In most cases, however, the line of treatment seemed effective or not on all the tumors, although with different degrees (some worked better on liver, some better on lung).  My wife has some cancer in her hip which seems to be a good indicator for her - for the treatments that work the pain goes away quickly, and if the pain there comes back usually the treatment is not working overall.  For my wife the carbo/alimta worked great, while the alimta alone, as well as Opdivo, not at all.  She has been in two clinical trials - one which worked for about 18 months, and one which had a mixed result.  The more standard chemotherapies, carbo, Gemzar, and Abraxane (a type of taxol) have been the ones that have actually worked the best overall.

Please let me know if there are any other questions I can answer for you, and I wish you and all your family a New Year full of peace and health!

 

-scohn

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 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. 10/18 start Abraxane.

JanineT Forum M...
I wonder if there's a

I wonder if there's a relationship between exon 20 and inefficacy of alimta. 

scohn
Interesting Question

Hi Janine.

 

I think this is exactly the type of question they will (hopefully) be able to answer as they correlate more clinical results with patients' genetic profiles.  For example I did find one study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869778/) that showed Alimta did not work as well for HER2 as it did for some other mutations.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 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. 10/18 start Abraxane.

Jim C Forum Mod...
Jim C Forum Moderator's picture
Interesting question

scohn,

I agree, and I think that when a larger number of patients receive broad-spectrum genetic testing we may really see rapid improvements in matching treatments to a particular patient's genetic profile. 

Jim C Forum Moderator