Katum31

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.

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!!

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.

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!!

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!

@Rower Michelle it was my understanding that the oncologist wanted to talk with the doctor who placed the port because he was uncertain if they should drain the fluid this soon after chemo as there’s an increased risk of bleeding due to the chemo. It honestly didn’t make much sense to me though. I had her contact the oncologist again because she’s having increased difficulty breathing along with increased discomfort and anxiety, and this time he apparently spoke with another oncologist who told him that if this were her patient, she would go ahead and drain the fluid, so he agreed to put in a thoracentesis order that will “hopefully be scheduled in the next few days”. I guess this is better than nothing but we are definitely pushing for the procedure to happen ASAP! Seriously, thank you so much for your responses!!

Thank you @Rower Michelle and @Tom Galli for the responses! Despite my efforts to convince her to tell her oncologist or chemo nurse prior to the treatment, she ended up deciding to go through with the chemo treatment and then contacting her oncologist (she was just really afraid it would prolong the treatment again). The chemo went well and there are no side effects so far, which is good! Unfortunately, the shortness of breath and coughing seems to be getting worse. She went to her oncologist yesterday who Did an X-ray that showed either fluid or consolidation but he wanted to contact the doctor who put in the chemo port to get his opinion, and then he will let us know the course of action. That was yesterday. Today we messaged him and he said the other doctor never responded, so he may be on vacation, and so he suggested we just wait until he gets back (whenever that will be?) before we decide on what to do. We’re hoping that they will get back with us sooner rather than later. I don’t know how fast fluid in the lungs can become very serious, so I’m hoping that just waiting a few days won’t ultimately set us back even farther.

Thank you everyone for your encouraging words and support!! Mom just finished 5 rounds of targeted radiation for the brain metastasis. She’s still feeling good and has so far had no negative effects from the radiation. They also did a radiation treatment on her hip to help with the pain. She starts her chemo treatment Monday. She isn’t doing the immunotherapy at the advice of the oncologist at MDA, and apparently this is so she won’t be excluded from potential clinical trials in the future. She’s doing well right now, although she’s now saying her leg is hurting below the knee and there’s a fullness in her left lung. I’m worried that the fullness is pleural effusion, and I suggested to contact her oncologist, but she’s worried this could potentially push back the chemo treatment Monday, so she wants to wait until after the first treatment. I’m not sure if this is the right decision or not, but she says it’s not really affected her breathing, so I guess we can just wait until after the treatment Monday. I really do thank you all for the support as well as the resources y’all have made available for us to try and get a grasp on everything.

@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 your reply and for sharing your experiences with the different treatments. I really appreciate it so very much! Your mom definitely sounds like a warrior! I’m glad that she was able to push through, and I hope that she is doing well now! The chemo regimen that they plan to put my mom on is carboplatin/pemetrexed/pembrolizumab. I was under the impression that we weren’t going to do immunotherapy, as the oncologist we got the second opinion from say it may interfere with clinical trials in the future... but it’s my understanding the the pembrolizumab is a type of immunotherapy treatment. This really is all so confusing and conflicting information definitely doesn’t help. Since this started I told my mom her only job through all of this was to get better and to leave everything else up to us. I’m making it my goal to learn every single thing I can about this, so I know that we are doing everything possible to get her better.

Thank y’all so much for the responses and support! This community really is awesome. @Rower Michelle I just ordered that book and had a copy sent to my mom as well! I can’t wait to read it! I will also check out the Facebook groups. Thank you so much for the information!! @Curt thank you so much for the response and information as well! I’m so happy yours was caught early on! Thank you for providing the link, and I will definitely check it out. Unfortunately, we just found out that we no longer qualify for the clinical trial to target the brain lesions because my mom has been on steroids. I guess at this point we will just be doing targeted radiation for the lesions and then chemotherapy for the lung cancer and go from there. It’s been a little more than a month since the diagnoses and we haven’t started any type of treatment yet which is the most frustrating part I think. Maybe once we begin, and we are able to feel like we are actually doing something proactive, things will feel a little bit better. I don’t know the success rate of regular chemotherapy on this type of mutation, but I’d imagine clinical trials will be in our future at some point. I’ll definitely be looking into them a lot over the next few weeks/months so we can be prepared if that’s the direction we will be needing to go. Again, thank you all for you support, knowledge, and encouragement. I really am so thankful to have found this community!

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

Hi everyone! I’m here because my mom was recently diagnosed with Stage IV non small cell adenocarcinoma that metastasized to her brain and hip bone. It all started when she went to the doctor because her hip had been hurting her. She thought maybe she had arthritis in her hip, but a scan showed that it, unfortunately, wasn’t arthritis. Multiple scans and biopsies later we find out it’s lung cancer with an EGFR gene mutation and an Exon 20 insertion. After we found out the diagnoses, we learned that she had one large brain metastasis and about 4 very small ones. The largest one was pushing on her occipital lobe and causing vision problems, so about 3 weeks ago (1 week after diagnoses) she had surgery to remove the big lesion. The surgery went extremely well. They were able to get all of the biggest mass without having to cut into the brain tissue too much. She recovered so well from that surgery. In terms of actual treatment, we haven’t started anything yet but that is coming in the near future. Her oncologist had first recommended Tagrisso due to the EGFR mutation, but then decided against it because of the Exon 20 insertion and ultimately decided on chemotherapy and immunotherapy for the lung, and then radiation for the brain lesions. We just had an appointment with a cancer center here where I live in Houston to get a second opinion and maybe see about clinical trials that were available, and unfortunately that appointment was a bit disappointing. They ultimately said that their clinical trials are currently full, and they recommend doing treatment with the original facility except they don’t recommend immunotherapy because it may interfere with clinical trials available to us down the road. There’s also a clinical trial currently going on for the brain lesions that she qualifies for at the original facility as well. So within the next couple of weeks we will be starting calcium injections to strengthen her hip bone, chemotherapy to target the lung cancer, and gamma knife radiation for the brain lesions. She’s still young (only 60) and she’s so healthy which is why this was such a shock. She’s had bloodwork done for her thyroid every 6 months for the last 20 years and nothing has ever been abnormal. She’s gotten all of her annual tests and screenings they recommend and everything has always come back perfectly normal. It’s just been such a shock. I love this site because the stories I read give me so much hope. If anyone is out there with some encouraging words or stories I would be so grateful to hear them. I know everybody is different and statistics don’t always mean anything, but it’s hard to not get caught up in them, and they can really bring you down