Jump to content

Mom newly diagnosed with Stage IV NSCLC


Recommended Posts

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! 

Link to comment
Share on other sites

  • 3 weeks later...

Hey everyone! My mom had the pleural effusion drained from her lungs on April 26th, and she immediately felt better! They biopsied the effusion and said that it was malignant (which is basically what we figured).  Things had been going great since then, she has completed 2 rounds of chemo (the second one was 2 days ago), and so far she felt fine. She said she felt a little tired for a few days after the treatments, but other than that she felt good! We were feeling very positive about everything until this morning when she suddenly felt like she couldn't breathe again. Turns out she probably has pleural effusion again. She did a CT scan this morning and meets with the oncologist tomorrow. They are going to put her on the schedule to have the fluid drained again, hopefully within the next few days.

After this, I'm beginning to become discouraged again.  Is that fact that the pleural effusion back again a really bad sign?  Can people have malignant pleural effusion and still end up coming out of this with NED?  I was just feeling so hopeful, but I'm starting to become really discouraged that she is continuing to have the effusion.  Is this very common?  Is it a really bad sign? Does this indicate that things are progressing and getting worse?

Any wise words or words of encouragement (or truth) would be appreciated! Thank you!!

Link to comment
Share on other sites

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

 

Link to comment
Share on other sites

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. 

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

  • 3 weeks later...

Hey everyone! Mom has been doing really well lately, she had the fluid drained from her left lung again, which made her feel immediately better.  She has still been doing great with chemo - no major side effects - she goes for her 3rd treatment today. 

This morning though, she felt pressure in her left lung again, so they did an x-ray, and sure enough, that fluid is beginning to fill up again. Her oncologist suggested she have a pleurodesis done to prevent future fluid build up.  Has anyone had this done before?  How did it go?  I've been trying to read up on it as much as I can, but I can't seem to find much in terms of the overall outcomes of patient's who have had this procedure done.  Any insight would be helpful!  Thank you all so much!!

Link to comment
Share on other sites

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

Link to comment
Share on other sites

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. 

Link to comment
Share on other sites

  • 8 months later...

Katum,

Sorry to hear about your Mom's lung cancer. She is a blessed abundantly to have you as her daughter, that is awesome! Everyone has already said the things that needed to be said to help you on this journey. I will repeat that I too am here for you. I pray that your Mom will recover, every day there are new treatments and it could happen to us that we will be cured!  Kate

Link to comment
Share on other sites

  • 2 years later...

Hi Katum! Your situation sounds very much like my mom’s situation. Her cancer diagnosis started with the malignant pleural effusion. It also looks like my mom has the EGFR exon 20 mutation. Can I ask if your mom has started any clinical trials and if she is still doing well? 

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.