Nsclc exon 21- need advise

Hi patneo and welcome to Grace.  I'm so sorry your wife is going through this.  It isn't possible or even legal to give advice to someone online unless it's in a proper virtual consultation done through an oncologist's clinical practice and that's not something Grace does.  We are here to offer information on topics related to cancer so you can make the best decisions with your oncology team.

Tagrisso hasn't been shown to cause MPE (malignant pleural effusion).  MPE is an unfortunate symptom for many people with lung cancer and is treated separately.  If tagrisso is working, which according to your post it is, and not causing unmanageable side effects it would be continued. 

There are several options for managing MPE.  When pleural effusions have cancer cells they usually recur/continue to cause build-up of fluid in the pleural space after it's been drained.  If that happens an indwelling catheter can be placed and managed at home so you don't have repeated trips to the hospital (there are tips for making this process sanitary and gentler so don't hesitate to make sure the process is as painless as possible).  Sometimes MPEs create pockets of fluid that a catheter can't reach and there are options for that as well that can be tried. 

It's great that the tagrisso works so well and that's heavily in your wife's favor. 

Here are links to videos on managing MPE (the first 4 apply to your questions).  

It's not possible for anyone to know where your wife is in this journey.  MPE is a problem but tagrisso is working well and probably not causing many issues.  If you have to guess, guess for the best outcomes. 

I hope this answers some of your questions.  Keep us posted and let us know if you have further questions.

Janine

Hi patneo,

I'm sorry but your wife's situation sounds too complicated to make judgments about possible best practices. I think our language barrier may be complicating our communication as well...because if tagrisso is working then there wouldn't be a reason to discontinue it (it wouldn't be thought to cause pleural effusion or blood clots). If the onc is worried that she has blood clots then a CT or x-ray or ultrasound would see it. PET scans aren't used to identify blood clots and they are very expensive to use (sometimes they are even used unnecessarily to help pay for them). To our knowledge, carboplatin can cause blood clots.

There is a standard dose that is common to use for drugs, it's usually the dose at which they were tested.  Often oncologists will use less of the drug if the patient isn't fit enough to take the whole dose.  That may be what is meant by light dose but you would need to talk directly with her onc for more input. 

I'm a big fan of 2nd opinions, especially when you don't understand the current oncs decisions.  This article will help you understand the reasons why one would get a 2nd opinion. 

Your wife is lucky to have you working so hard to get what is best for her.  All the best for you and her,

Janine

Staying on tagrisso will continue to work on cancer that still has the EGFR mutation.  Yes, cancer with the EGFR mutation tends to mutate to resist tagrisso and other targeted drugs.  If a tumor grows but others don't it is typical to stay on tagrisso (to control EGFR mutated cancer) and add chemo if the progressing cancer cannot be radiated or surgically removed like a malignant pleural effusion.  So it sounds like you're wife is on the right track.  This video series may be helpful and will certainly explain better than I can. 

I hope all goes according to plans.  Best of luck,

Janine

I don't know what your first language is and just in case...

We have many Spanish language videos. This one is of our 2022 Spanish language Targeted Therapies Patient Forum. We also have a Mandarin language video collection.