Nsclc exon 21- need advise

Fri, 10/28/2022 - 17:18
patneo2
Posts:2

Wife 50 years old , diagnosed with lung cancer in May 2022 – adenocarcinoma ,L858R, exon 21, T790M not detected.
Tumour right lung lower 2.5 x 1.8 and met on left lung and 8th ribs .
On Tagrisso – 2 days once and on 3 Oct – CT scan show tumour side 1.7 x.16 and left lung clear and bone met numbers lower.
She feel good, test result are good. until 10th Oct to 13th Oct – she feel breathless and went to see our Onc. X ray show right lungs got pleural effusion and drain out at 2.2 litre. ( colour is pink plus yellow ). Culture test is negative . 40cc fluid contain NSC – carcinoma compatible with adenocarcinoma. Went home and rest for the next 10 day .Went back to see the Onc on Tue, x-ray shows again PE. and had to went in to drain again at 1.7 litre. Remain less than 1 litre in the body. Ward doc said no need as no benefit but post risk is draw. Onc put her on daily Tagrisso starting 3 days ago.
She is feeling slight breathless ( Hospital Ward put her on oxygen ) when walk. Sit and eat has no issue

I am lost as it was fine with Tagrisso 80mg for 3 months ( technically on 1.5 months as 2 days once ) and sudden change of wind. I have confusion questions that hope the team can share some direction.

Is her condition consider early in treatment ?
Is Tagrisso causing the PE ? side effect ?
After PE drawn – it is common to feel breathless – getting down bed and walk a bit. ?
What will be the next steps ? in an medical view . Continue Tagrisso and monitor ?
Does she require chemo ? can share what is the chemo recommend ?
Please help share some LIVE or medical experience to me ?

JanineT Forum …
Posts: 461
Forum Moderator and former caregiver

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

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

patneo2
Posts: 2

Will doing an ct pet scan to look blood clot in lungs plus onc will be issuing an light dosage of Pemetrexed and carboplatin for a course and after that an 3 weeks once drip.
What do it mean by light dosage?
So I need to seek another opinions?
Is there other medicine? No chemotherapy ?

JanineT Forum …
Posts: 461
Forum Moderator and former caregiver

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

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

patneo2
Posts: 2

Thanks for the advise
Onc insisted to carry on the Tagrisso. We will doing that.
His suspicion that she might have 2 set of different cells which one is showing effect on Tagrisso and the another is not. He will be doing an biosys from the fluid to determine cell type. The main reason of the chemotherapy.
Questions - in may - when she did her biosys. Report only show 1 type of cell. Is there an possible of an developed change ?

JanineT Forum …
Posts: 461
Forum Moderator and former caregiver

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 joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

JanineT Forum …
Posts: 461
Forum Moderator and former caregiver

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.

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.