Eugenia Gregorio Posted February 12, 2019 Share Posted February 12, 2019 My mom was recently diagnosed with Stage 4 Lung Cancer that has spread to her bones. She has completed her second chemo/keytruda treatment and will start a new treatment in a week because she should be getting approved to take Tagrisso (gene drug) soon too. They first found the cancer because they thought she had a pneumonia due to fluid in her lungs, then found the mass after realizing that the antibiotics were not helping. That was about 2 months ago in early December and a month later they diagnosed it as NSCLC. Since her second chemo treatment, which was 2 weeks ago, she has been rushed to the ER (first for dehydration and then for trouble breathing) and both times they had to drain the fluid in her lungs. She is in the ER tonight and they plan to put a tube in to help keep it draining even after she goes home and they are also giving her antibiotics just in case she does have a pneumonia. She has been very tired since chemo treatment started, sleeps almost all day, refuses to get up and walk around, and when she does walk around she insists on using a walker so she is not getting stronger. Her motivation and confidence is very low. I'm at a loss and I live far away. Has any experienced this fluid build-up issue over and over again? The doctor said it is not ideal... Link to comment Share on other sites More sharing options...
Tom Galli Posted February 12, 2019 Share Posted February 12, 2019 Eugenia, Unfortunately fluid in the lungs (pneumonia) or fluid between the outer lung tissue and pleural tissue is rather a common symptom. Hopefully the drain will eliminate the discomfort and ER visits. Keep encouraging her to get up and around even if she uses the walker. Being up will also help reduce the fluid buildup and make her coughing more productive. Also encourage your mom to drink lots of fluid. Does your mom have additional health issues? Stay the course. Tom Link to comment Share on other sites More sharing options...
Steff Posted February 12, 2019 Share Posted February 12, 2019 Eugenia, My mom had several episodes of fluid buildup around her lungs while on chemo + immunotherapy. At her worst, she was in the hospital for nearly 2 weeks and they drained several liters of fluid off her lungs, she also had pneumonia. Other times she would have much smaller amounts of fluid removed via a day surgery - that probably happened 4-5 times from August - November. Once the cancer stabilized and then went away, the fluid stopped building up. Over a year later, she still has some fluid build up once in awhile, but it usually goes away on its own. It is not ideal, but as Tom said, it's pretty common. What my mom found helpful is moving around - my mom had to use a walker for a bit too due to being so weak. She also continues to sleep on an incline - she has an adjustable bed, but wedge pillows work the same. She also takes Mucinex as part of her daily regimen and probably will for the rest of her life - it helps her cough up the junk in her lungs. And finally, as Tom said, keeping hydrated. To me, this sounds counterproductive, but everything needs to stay hydrated to work properly. If your mom hates water like my mom does, try Gatorade or Pedialite. My mom also lived on Kerns juice that comes in a can. It's packed with sugar and isn't the most hydrating, but it provided her much needed calories. Take Care, Steff Link to comment Share on other sites More sharing options...
Robert Macaulay Posted February 12, 2019 Share Posted February 12, 2019 On the subject of staying hydrated which is very important, not great fan of drinking water, I found adding splash of Roses's Pure lime juice cordial to each large glass of water , I have four glasses daily makes it for me very pleasant to take. Bob Link to comment Share on other sites More sharing options...
Eugenia Gregorio Posted February 13, 2019 Author Share Posted February 13, 2019 Thank you, all! This group is awesome and so informative. The doctors are doing the tube tomorrow so we'll see how that goes. She was having home health visits for basic nurse check ups, PT, and shower help and now they will need to help dump the bag? I'm also trying to figure out how to get her more "hours" of home health aide at home and maybe this condition will help push that request along. My parents are retired and my mom used to do everything for my dad and he is now overwhelmed and burning out. He's trying hard but he was not born to be a caregiver, that's for sure. He also has an anxiety disorder and gets worked up really easily. Tom - Before cancer was discovered, she had no other health issues beyond maybe osteopenia, which runs in the family. I'm trying to encourage her but she has no motivation and is very down on the whole thing like she's ready to give up. She has only done two treatments! Steff - Yes, my mom hates water too. She started putting crystalite in her water to make it taste better. Do you think that's OK? She also drinks 2-3 boost or ensure drinks everyday to get some nutrients because she doesn't always eat full meals. It's hard to see her use a walker and I don't want her to feel like she has to rely on it because they she won't get stronger. She also hates exercise, always has, but she is very active and a healthy weight - just very weak. Some good news, I think? ...is that the doctor confirmed that she was approved for Tagrisso as a gene therapy pill starting next week and will not have to get chemo IV anymore. Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 13, 2019 Share Posted February 13, 2019 So your Mom is a lung cancer mutant- EGFR. She will probably feel so much better on the Tagrisso & fast. You might see a pretty nice improvement within a few days of starting the targeted therapy. I take a drug in the same drug class & my symptoms improved after the first dose. There is hope for your Mom! Michelle Link to comment Share on other sites More sharing options...
LaurenH Posted February 15, 2019 Share Posted February 15, 2019 Hi, Eugenia, We're glad that this group has been a good source of information and support for you! Please continue to keep us posted on how you and your mom are doing. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Eugenia Gregorio Posted April 19, 2019 Author Share Posted April 19, 2019 Hi Michelle! Which drug do you take? Tagrisso was working so fast but after 30 days she had a bad side effect with it and isn't allowed to go back on it so they want to switch her to Tarceva? Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 19, 2019 Share Posted April 19, 2019 Hi Eugenia- I’m an ALKie mutant taking Alectinib. In mutant land the EGFR is one of the best studied so I would have complete confidence in the doc’s recommendation for Tarceva. “Back in the day” (like last year) Tarceva was a first line EGFR therapy. It works well for most people over a long term. In ALK there’s a concept of when there is disease progression on Alectinib to try an older inhibitor as a second line. Not the same as side effects though but you get the idea. “Older” inhibitors do work well. One long term EGFR survivor is Diana Lindsay. She wrote the book “ Something More Than Hope”. It could easily be retitled to “The Mutant Survivors Guide”. In the book she speaks about her ride on Tarceva quite a bit. I’m also wondering if after Tarceva the Tagrisso might be tried again in the future. You might want to ask about that. You might want to contact the Bonnie J Addario Foundation for some advice. There are a number of EGFR survivors in the YouTube Living Room. Facebook also has a large EGFR community too. A second opinion might also be considered as well. Part of me wonders if the pneumonitis was really the Tagrisso or maybe the Keytruda?? I only had one hit of the triple combo. After about a week, the coughing fits were even worse (I also had pneumonitis) to the point I briefly considered no treatment. We thought the Keytruda was the culprit. Hold onto your hope- there’s about 900 clinical trials for EGFR with the innovative emerging quickly. Who knows at this rate in the next year Tagrisso can become “so last season” as there will soon be a next generation of inhibitors that will likely leapfrog it. How are your parents coping? Attitude is so critical in managing this disease. I really understand the stress your Dad is under- my hubby nearly collapsed when I was diagnosed. He didn’t really know how to cook anything other than pasta & scrambled eggs. He’s my sous chef now having taking a love to the instapot. As I felt better- so did he- even though he grumbles about doing the food shopping & cleaning bathrooms. 😋 Keep us posted - my prayers for your family. Hugs! Michelle Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.