Katum31

Thank you so much for your response!  It’s just so amazing and terrifying how healthy a person can appear, but we have no idea what’s going on inside the body. 
The last month has been filled with so much fear, anxiety, anger, etc. but I love the survivor stories because they give me so much hope. 
Mom is a fighter, so I’m trying to remain as optimistic as possible 

Thank you @Tom Galli and @Curt for the responses and encouraging words.  I really appreciate them!
The CT scan showed moderate pleural effusion in the left lung (which we knew) and now small effusion in the right lung - which is new. There were no issues with the right lung at the start of treatment, which now has me worried that the cancer may have spread to her right lung.  She still has 2 more chemo treatments, and then they will do another scan at the end of July, so I guess we will sit tight until then.
I never thought of the experience being like a pendulum, but you are so right. It really is amazing how far it can swing.  She's getting the fluid drained from her left lung later on today, so at least she will be feeling better soon. Hopefully now the pendulum will swing towards the good side again.

Thank you @Tom Galli! I told my mom this and she feels a lot better about having the procedure! The oncologist has already put the order in for it, and I plan to call tomorrow to follow up on it. Hopefully she will have it done tomorrow! 

Thank you so much for your response!  It’s just so amazing and terrifying how healthy a person can appear, but we have no idea what’s going on inside the body. 
The last month has been filled with so much fear, anxiety, anger, etc. but I love the survivor stories because they give me so much hope. 
Mom is a fighter, so I’m trying to remain as optimistic as possible 

Thank you so much for your response!  It’s just so amazing and terrifying how healthy a person can appear, but we have no idea what’s going on inside the body. 
The last month has been filled with so much fear, anxiety, anger, etc. but I love the survivor stories because they give me so much hope. 
Mom is a fighter, so I’m trying to remain as optimistic as possible 

Thank you so much @Tom Galli! I told my mom to ask about a stent and she’s going to when she meets with the thoracic surgeon. She said she feels a little better right now, so maybe we will get lucky and it will just resolve on it’s own like the right lung did a couple weeks ago (wishful thinking probably). 
Either way, I’m just so thankful for how well she has been feeling overall. She’s had no chemo side effects so far and has continued with all of her normal activities. When she sees people she hasn’t seen in a while, they are amazed that she’s even sick. I’m keeping my fingers crossed and good vibes going that it continues on like this. She goes for a brain scan tomorrow to make sure the brain meta are all gone and no new ones have popped up. I know she’s really worried about it, so I’m praying for a clear scan to lift her spirits up even more. 

Katum,
I don't have any personal experience with a pleurodesis nor do I know anyone who does.  My friend who had extensive pleural effusions had a stent placed to drain the pleural cavity.  Suggest before you make a pleurodesis, you compare a stent procedure.  As I understand, the stent is temporary while the pleurodesis is irreversible.   
Stay the course.
Tom

Katum I can’t offer any personal input on your questions.  Others may be able to.  I can tell you that cancer is an up and down battle.   There will be times when things are going well and there will be others, like now, where it feels like everything is going wrong.  That pendulum can swing very far in each direction pretty quickly.  I don’t have any words of wisdom on how to manage that.  Just know that we all go through it with this disease.  I’m hoping things improve for your mom soon. 

Katum,
Unfortunately, multiple pleural effusions are a common occurrence in lung cancer. 
I corresponded with a guy who was drained about once a week. His chemo finally took hold and that stopped the effusions. The important take away is the pressure can be relieved and treatment can stop the effusions. 
Stay the course. 
Tom
 

Thank you @Tom Galli! I told my mom this and she feels a lot better about having the procedure! The oncologist has already put the order in for it, and I plan to call tomorrow to follow up on it. Hopefully she will have it done tomorrow! 

Thank you @Tom Galli! I told my mom this and she feels a lot better about having the procedure! The oncologist has already put the order in for it, and I plan to call tomorrow to follow up on it. Hopefully she will have it done tomorrow! 

Thank you @Tom Galli! I told my mom this and she feels a lot better about having the procedure! The oncologist has already put the order in for it, and I plan to call tomorrow to follow up on it. Hopefully she will have it done tomorrow! 

Katum,
A thoracentesis procedure is a common remedy to remove fluid.  There is minimal pain in installing the temporary drain and relief from breathing discomfort is almost immediate.  
Stay the course.
Tom

Hi Katum
Hope & wait are not words I’m generally not a fan of.  It’s too easy to get lost in the shuffle.  You might want to press again for a clearer answer.  Something doesn’t make sense to me. Typically the MD who inserts the port is an Intervention Radiologist- not a pulmonologist or internal medicine specialist.  They usually don’t follow patients after the procedure. I’d consider making another call to the oncologist if your Mom is not comfortable or the symptoms are worsening.   Keep advocating! 
Let us know how it goes. 
Michelle

Hi Katum-
Thanks for the update!  Just a word of caution on the waiting.  Learning to be a patient requires patience on the mindset shift to live with this stuff.  A simple phone call can make the difference between peace of mind or a visit to the ER.  So often times we think we can tough it out when in reality with LC it’s better to be proactive.  LC is sneaky & we must not ever let our guard down.  
I had an issue with fevers after my first dose & landed in the ER.  The docs were very aggressive wanting to rule out a pulmonary embolism. A stat CT scan was ordered up & I had a fountain of blood draws.   Turned out to be a virus 🦠.   I was so glad to be “over treated”!
Keep us posted! 
Michelle

Katum,
I would definitely disclose the pleural effusion (fullness in left lung) symptoms to the chemo nurse before starting treatment.  Let the nurse and doctor make the call on administering chem given this symptom.
Stay the course.
Tom

Katum31 welcome and I don’t have anything to add other than I love your attitude and drive for answers. 
 I’m like Lexi I want control but my kids have been my backup. They’re just has involved in all steps of my treatment and health. 
Continue to let her know how strong she is. 
Take Care
Paula

Hi, Katum31,
Welcome to LCSC. My name is Lauren and I'm the Digital Community Manager for LUNGevity Foundation.
I'm glad to see that you've already connected with a few of our members. This community is a great place to find information and support. Please feel free to explore the message boards and blogs, ask questions, and join the ongoing conversations.
In addition to these forums, LUNGevity also has a robust Lung Cancer 101 website, free patient educational materials, a Survivor and Caregiver Resource Center, peer-to-peer support programs,  a toll-free Lung Cancer Helpline, survivorship conferences, and lunch and learn events. You can explore more here: https://lungevity.org/for-patients-caregivers
Please let me know if you'd like any additional information about LUNGevity's Support & Survivorship Programs.
We are here for you!
With gratitude,
Lauren
--
Lauren Humphries
Digital Community Manager
LUNGevity Foundation

@Steff thank you so much for sharing your knowledge, as well as your experiences and your mom’s story. I look forward to reading it, and I appreciate you sharing so much detail to help inform others. Knowing other people’s personal stories/side effects makes understanding a little easier. 
@LexieCat thank you so much for your response and I promise I don’t take any offense to it! I completely understand what you mean, and I would never want my mom to feel like she can’t make her own decisions. She’s extremely proactive in her diagnoses/treatment plan right now, and I would honestly be worried if she weren’t (I get my need to be in control of things from her lol). She actually might know more about her diagnoses than I do right now, and I actually expect she will eventually stumble upon this community haha. I just never want to her feel overwhelmed or stressed with which options are out there, what to do, etc. Stress won’t help, so whatever I have to do to take any burden off of her, that’s my job, and I will gladly do it. I told her that we’re all on the same team, it’s just she has unfortunately been chosen to be the star player; but, the rest of us will be making a lot of assists along the way. 
@Susan CornettI’m actually from Louisiana (which is where mom lives), but I’ve lived in downtown Houston for the last few years. I just never thought about lung cancer being found accidentally until all of this started. You always think it starts with a cough/breathing issues. I’m definitely trying to ignore the statistics. None of the MDs have given her a “prognosis” and honestly we aren’t really interested in hearing it. She says she wants to be someone that helps in increasing the current statistics, and I believe she will!

@Steff thank you so much for sharing your knowledge, as well as your experiences and your mom’s story. I look forward to reading it, and I appreciate you sharing so much detail to help inform others. Knowing other people’s personal stories/side effects makes understanding a little easier. 
@LexieCat thank you so much for your response and I promise I don’t take any offense to it! I completely understand what you mean, and I would never want my mom to feel like she can’t make her own decisions. She’s extremely proactive in her diagnoses/treatment plan right now, and I would honestly be worried if she weren’t (I get my need to be in control of things from her lol). She actually might know more about her diagnoses than I do right now, and I actually expect she will eventually stumble upon this community haha. I just never want to her feel overwhelmed or stressed with which options are out there, what to do, etc. Stress won’t help, so whatever I have to do to take any burden off of her, that’s my job, and I will gladly do it. I told her that we’re all on the same team, it’s just she has unfortunately been chosen to be the star player; but, the rest of us will be making a lot of assists along the way. 
@Susan CornettI’m actually from Louisiana (which is where mom lives), but I’ve lived in downtown Houston for the last few years. I just never thought about lung cancer being found accidentally until all of this started. You always think it starts with a cough/breathing issues. I’m definitely trying to ignore the statistics. None of the MDs have given her a “prognosis” and honestly we aren’t really interested in hearing it. She says she wants to be someone that helps in increasing the current statistics, and I believe she will!

@Steff thank you so much for sharing your knowledge, as well as your experiences and your mom’s story. I look forward to reading it, and I appreciate you sharing so much detail to help inform others. Knowing other people’s personal stories/side effects makes understanding a little easier. 
@LexieCat thank you so much for your response and I promise I don’t take any offense to it! I completely understand what you mean, and I would never want my mom to feel like she can’t make her own decisions. She’s extremely proactive in her diagnoses/treatment plan right now, and I would honestly be worried if she weren’t (I get my need to be in control of things from her lol). She actually might know more about her diagnoses than I do right now, and I actually expect she will eventually stumble upon this community haha. I just never want to her feel overwhelmed or stressed with which options are out there, what to do, etc. Stress won’t help, so whatever I have to do to take any burden off of her, that’s my job, and I will gladly do it. I told her that we’re all on the same team, it’s just she has unfortunately been chosen to be the star player; but, the rest of us will be making a lot of assists along the way. 
@Susan CornettI’m actually from Louisiana (which is where mom lives), but I’ve lived in downtown Houston for the last few years. I just never thought about lung cancer being found accidentally until all of this started. You always think it starts with a cough/breathing issues. I’m definitely trying to ignore the statistics. None of the MDs have given her a “prognosis” and honestly we aren’t really interested in hearing it. She says she wants to be someone that helps in increasing the current statistics, and I believe she will!

@Steff thank you so much for sharing your knowledge, as well as your experiences and your mom’s story. I look forward to reading it, and I appreciate you sharing so much detail to help inform others. Knowing other people’s personal stories/side effects makes understanding a little easier. 
@LexieCat thank you so much for your response and I promise I don’t take any offense to it! I completely understand what you mean, and I would never want my mom to feel like she can’t make her own decisions. She’s extremely proactive in her diagnoses/treatment plan right now, and I would honestly be worried if she weren’t (I get my need to be in control of things from her lol). She actually might know more about her diagnoses than I do right now, and I actually expect she will eventually stumble upon this community haha. I just never want to her feel overwhelmed or stressed with which options are out there, what to do, etc. Stress won’t help, so whatever I have to do to take any burden off of her, that’s my job, and I will gladly do it. I told her that we’re all on the same team, it’s just she has unfortunately been chosen to be the star player; but, the rest of us will be making a lot of assists along the way. 
@Susan CornettI’m actually from Louisiana (which is where mom lives), but I’ve lived in downtown Houston for the last few years. I just never thought about lung cancer being found accidentally until all of this started. You always think it starts with a cough/breathing issues. I’m definitely trying to ignore the statistics. None of the MDs have given her a “prognosis” and honestly we aren’t really interested in hearing it. She says she wants to be someone that helps in increasing the current statistics, and I believe she will!

@Steff thank you so much for sharing your knowledge, as well as your experiences and your mom’s story. I look forward to reading it, and I appreciate you sharing so much detail to help inform others. Knowing other people’s personal stories/side effects makes understanding a little easier. 
@LexieCat thank you so much for your response and I promise I don’t take any offense to it! I completely understand what you mean, and I would never want my mom to feel like she can’t make her own decisions. She’s extremely proactive in her diagnoses/treatment plan right now, and I would honestly be worried if she weren’t (I get my need to be in control of things from her lol). She actually might know more about her diagnoses than I do right now, and I actually expect she will eventually stumble upon this community haha. I just never want to her feel overwhelmed or stressed with which options are out there, what to do, etc. Stress won’t help, so whatever I have to do to take any burden off of her, that’s my job, and I will gladly do it. I told her that we’re all on the same team, it’s just she has unfortunately been chosen to be the star player; but, the rest of us will be making a lot of assists along the way. 
@Susan CornettI’m actually from Louisiana (which is where mom lives), but I’ve lived in downtown Houston for the last few years. I just never thought about lung cancer being found accidentally until all of this started. You always think it starts with a cough/breathing issues. I’m definitely trying to ignore the statistics. None of the MDs have given her a “prognosis” and honestly we aren’t really interested in hearing it. She says she wants to be someone that helps in increasing the current statistics, and I believe she will!

Well then, knowing your mom's specific treatment plan helps me to share more of my mom's story with you as it will be relevant...
Pembrolizumab is another name for Keytruda - an immunotherapy.  Standard care for folks without mutations with NSCLC adenocarcinoma often includes chemo + Keytruda.  My mom did not have any mutations, but her PD-L1 expression is in the high 90%'s, so it made her a good fit for Keytruda.  So her treatment plan included 2 kinds of chemo (Carboplatin + Alimta) and Keytruda.  She did 6 sessions of chemo + Keytruda and then went on to Keytruda alone for about 6 months.  I imagine your mom's different chemo cocktail is due to her EGFR gene mutation and an Exon 20 insertion.  
My mom's lung cancer responded to the treatment with total obliteration.  She has had no evidence of active disease for quite some time and felt immediate relief from the treatment (her cancer was on the back of her trachea and she had to have a stent to keep her trachea open, the stent was removed within a few months of beginning treatment because the tumor had shrunken so much).  Chemo has it's side effects. As I said before, my mom didn't do that great with her 2nd round of chemo.  It was a tough 6 months, but she made it through.  Keytruda has much less severe side effects for most people.  If you want, you can check out my mom's journey through her 1st year of Keytruda.  I talk about the side effects and troubles she had throughout the treatment.  You can find it    here.   I hope it provides you hope, that's my intention.
I know that you are probably in a dark place right now, I get it.  When I reached out to these forums, I had never been so lost in my life.  These forums and the information from LUNGevity helped me find my way and helped me to advocate for my mom.  If you were to ask my mom what kind of cancer she has, she would tell you lung cancer.  She doesn't know non-small cell or adenocarcinoma.  When you ask what kind of treatment she has had, she will say a lobectomy, chemo, radiation, and Keytruda.  And that's enough information for her.  I love that your mom's only job is to get better. I have the same philosophy.  I'm an only child and my dad has dementia, so I am it when it comes to the "team" of advocates for my mom.  I hope you have more support as it's an exhausting journey.  Arm yourself with knowledge and know that you are going to second guess yourself a lot.  But that's okay.  There's no clear cut path, your mom is forging her own path as a warrior.  

It's great that you are doing so much research and are willing to advocate for your mom.  I don't know your mom, but I do know this about myself.  For me, even though I value the support and input of my family, I would not be comfortable turning over all the information and decision-making to them.  At least as long as I am capable of doing so, *I* want to be the person making fully-informed decisions about my own treatment.  So make sure you aren't shutting your mom out or making her feel like she doesn't need to know what's going on.  Some people (like Steff's mom, apparently) really don't want all the details.  But a lot of us do.  Everyone is different.  Just be careful that in the interest of doing what you can to help you don't discourage her from taking an active role in her own treatment.
I hope you don't take offense--none was intended.  It's great to have kids who care so much.