Multi-focal nodules

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stepanl
Multi-focal nodules

Hi, my sister (47 YO, Seattle, WA) was diagnosed with lung cancer (non small cell adenocarcinoma) spring 2019. She had symptoms for a year before that, but her doctor at the time failed to do additional tests, she had ground glass on her scans and was being treated for pneumonia. She is now being treated at Virginia Mason in Seattle. June 2019 her lower and middle lobes of the right lung were removed with negative margins, 22 lymph nodes were removed and were all negative for cancer. The stage was determined as 3A. Her blood biopsy showed mutation EGFR T790M. She then had four treatments with adjuvant chemo:Premetrexed and cisplatin. Because of seemingly localized cancer, she was not qualified to receive targeted meds. Her scan after chemo was on Nov 1, 2019. Clear. Next scan was 7 months later (due to COVID 19). It showed innumerable small semi-solid nodules in both lungs. Doctor suggested to wait 6 weeks to see if they would resolve themselves. 6 weeks later there were unchanged. One is bigger than others at 7-8 mm, the rest are 4 mm or smaller. Biopsy was performed last week on Aug 11 and showed adenocarcinoma consistent with the previous occurance. We are waiting for the molecular test results, as we were told the mutation might be different this time. As a family of scientists we are education ourselves what is out there and what are possible treatments, new medicines, etc. Of course, we were told numerous times that the most recommended specialist Dr. West left Seattle right before the diagnosis. My sister was never a smoker, not sure if it's a helpful piece of information. We plan on making an appointment with Dr. West, as we would like to know his opinion on the course of treatments, options, etc. What would you recommend? As a side note, we love our team of doctors, but with so much different research out there, we think it's important to have an opinion of Dr. West. thanks so much!

 

JanineT Forum M...
Hi stepanl, I'm sorry to hear

Hi stepanl,

 

I'm sorry to hear about your sister.  What a shame to have Dr. West move just as you need him.  As far as I know, he still does tele and/or web based appointments.  I'd certainly have one with him if BAC were a issue.  I imagine tagrisso is number one on the list of treatments available for her recurrance.  We have an abundance of literature on BAC that you will find helpful.  Since we are somewhere around 13 years old you must understand that the treatment drugs may have changed (mostly the tki's and immunotherapies) but in general all else remains relevant. 

 

The best way to access our BAC articles is to use google search site:cancergrace.org BAC.  This goes for any site that doesn't have google type search on their site.  Note that the results with 7 digit numbers are forum posts, not articles or videos generated by Dr. West.  They may still be quite relevant, just an FYI.

 

I hope your sister does well for a long long time.  Many people have been able to knock out periodic episodes of BAC and go on to live an otherwise normal life. 

All the best,

Janine

stepanl
Thanks so much Janine! Yes,

Thanks so much Janine! Yes, my sister was just prescribed Tagrisso, but all our search resulted in finding that it works (if it works) for 10 months and then stops working. I think we will call and make an appointment with Dr. West. Your site provides such wealth of information! I am going to be in the seminar about targeted therapies on the 12h. I really appreciate your help!

 

JanineT Forum M...
So glad you're attending the

So glad you're attending the patient forum.  I think you're be surprised at how much you'll learn.  Today research oncologists and specialists want their patients to be part of the decision-making process.  They can talk to lay people directly without talking down.  And when they get together with an audience of eager lay learners the discussions are more informative than any article can convey...and you can't get more up to date info.  I'm glad it's just at the perfect time for you and your sister.

 

As for the 10 months on tagrisso, I think the median pfs is more like 19 months for tagrisso but 10 months for 1st and 2nd gen egfr tki.  19 months PFS (progression free survival) is the median time to progression for a group of 1000s of selected people with egfr+ stage IV nsclc.  Like any bell curve, there are outliers in both directions with everyone else somewhere in between.  Given that type of info I found myself assuming the best outcomes for my husband, I suppose like a goal.  I was wrong a lot but I think it was a built-in 'hope' that kicked in.  He ended up quite the outlier in several aspects of his cancer journey.  His progression was assumed by several oncologists...twice but never a diagnosable biopsy for progression.  8 years ago he took a treatment break and didn't progress, the very best of best outcomes, I know.  While don's outlier position is unlikely to be matched very often it's a dreamy example of why hope shouldn't be discounted.

There is so much going on in targeted therapy treatment development that it's hard not to be hopeful. 

stepanl
headaches

Hello Janine, I hope you can help me find some answers in how to deal with some side effects on Tagrisso. My sister started it last Friday (Sep 18)  and since then has been experiencing debilitating headaches. Over the counter pain killers don't help, and the constant pain is causing high blood pressure, for which she can't take any meds yet. Her blood pressure went berserk after adjuvant chemo last fall, and never went back to normal. Are there any effective headache treatments for the Tagrisso takers?

JanineT Forum M...
I'm sorry your sister is

I'm sorry your sister is getting such bad headaches. 

 

And as always, keep her onc team up to date of new or worsening symptoms, including those you just can't take much more of.  The staff at cancer centers are filled with people who know countless tips and tricks of the trade.  Get to know them and let them know they are on your radar for getting info.  It's usually pretty easy to do.

 

Different over the counter painkillers work on different types of pain.  If you and she haven't figured this out, with cancer and cancer treatments you can't count on the same anything being the same as it was including otc drugs...try different types of otc pain meds. 

Her high blood pressure could be the cause of the headaches.  Does she know which came first?  Bringing down the blood presure may help with the headaches.

If your sister has diarrhea she may be dehydrated which causes headaches.  Drink more water/liquids.

 

If your sister was recently on steroids and stopped too quickly the headaches may be withdrawal symptoms.  People have a wide spectrum of how quickly they can taper off plus slower tapering is needed for longer treatment duration.

This is just a thought but triptans are a class of drug used to treat migrains. 

 

Headaches are listed as common side effects for tagrisso.  Her onc may want to try a lower dose even if it's just for a short term (remember that drug doses are found in early stages of clinical trials by finding the highest amount of the drug people can take before side effects are too bad.  For cancer treatments the bar is set pretty high on how much a person will take).  So, very often a person can get just as much efficacy from a drug when taken at lower doses. 

With lots of these drugs side effects can subside after the body gets used to it. 

 

I hope your sister can find relief and gets years out of tragrisso.

All the best,

Janine