Katum31 Posted September 25, 2019 Share Posted September 25, 2019 Hi everyone! It’s been a little while since I’ve posted about my mom but she hasn’t really been doing too well. She has been on chemotherapy (no immunotherapy) since March with no “progression” of the tumors in her lungs, but the brain Mets did increase so she recently underwent more targeted brain radiation to get rid of those. We have been trying to get her into a clinical trial, but so far she hasn’t qualified because the cancer in the lungs hasn’t significantly progressed. She has been having an absolute terrible time lately though with severe coughing and chest pain. She honestly can’t get through an entire sentence now without violently coughing up mucus/liquid/blood. We have tried everything for the coughing - she has had pleural effusion in the left lung in the past, has had it drained, then had a pleurodesis. She had pleural effusion in the right lung a few months ago and had it drained, but there wasn’t much there and that didn’t help. Her oncologist says he has no idea what’s causing the coughing and severe chest pain since chest x rays aren’t showing much fluid so basically she has just been trying to deal with it for the last few months. We have finally got an appointment at MD Anderson in 2 weeks to discuss the possibility of a clinical trial, so I’m really hoping she qualifies this time. I guess my question is, has anybody had terrible coughing and chest pain while on chemotherapy but have it go away or get better once starting a clinical trial? I’m getting extremely worried that maybe the chemo has damaged her lungs or airway and that’s whats causing her symptoms and she will have to live with this for the rest of her life even when she isnt taking chemo. She’s just so miserable right now and I can tell that she is starting to give up hope which isn’t good. She was so positive in the beginning and this has really taken a toll on her both physically and mentally. She’s just in so much pain and the pain medication her oncologist is giving her isn’t helping. We’re all holding out hope that she will qualify for a trial and her symptoms will begin to get better because I don’t think she will agree to do anymore chemo if she doesn’t qualify. I’m just really hoping someone might have some experience with this? Thank you all so much!! Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 25, 2019 Share Posted September 25, 2019 Hi Katum, I’m so sorry your Mom is going through all of this. I can certainly relate. When I was diagnosed the coughing spasms were terrible, coughing up a tissue box a day of gunk because there wasn’t enough fluid to drain. Then I had one round of the chemo/immunotherapy & the coughing got worse! I had even cracked a rib. When the biomarker testing came back I switched to targeted therapy. After one dose the coughing immediately stopped to everyone’s surprise. There is hope, MD Anderson is a great place with lots of lung cancer expertise. I hope your Mom gets some relief soon. Hang in there. Michelle Link to comment Share on other sites More sharing options...
Tom Galli Posted September 26, 2019 Share Posted September 26, 2019 Katum, Why is your mom coughing? First understand two things: I'm not a physician and I've had lung cancer treatments that caused a lot of coughing. Considering the pleural effusion symptoms and the coughing, I think lung or airway irritation may be the cause. It certainly was with me. I would recommend your mom consult with a pulmonologist ahead of her consultation with MD Anderson. During the long, hot Texas summer, I'm basically home bound because the sensitivity of my lung and airway to heat and pollutants. Houston and Dallas air quality are really bad this year because we had lots of spring and early summer rain; everything is growing on steroids! Here are the things I do to address my symptoms. First, stay indoors avoiding pollen and bad air quality. When I feel congested, I get in the shower, sit on a stool close to the floor and breathe in the steam. It loosens things up and makes it easier to cough. I try to avoid spasm coughing by softly clearing my throat to facilitate movement of "gunk" in the shower. If I have a particularly bad congestive period, I'll use my nebulizer with albuterol, then take a shower. I also have a prescribed inhaler that I use twice a day. My pulmonologist suggested these techniques and they help. My coughing now is a seasonal problem but I did a lot of coughing while in chemotherapy regardless of the season. Discuss these techniques with your mom's pulmonologist during her consult. I think (I hope) her coughing will wane when chemo is over. Chemo irritates the cancer tumors in her lungs and that irritation is what, I believe, is causing her coughing and pleural effusions. Stay the course. Tom Link to comment Share on other sites More sharing options...
Katum31 Posted September 26, 2019 Author Share Posted September 26, 2019 @Rower Michelleand @Tom Galli Thank you both so much for the replies and the hope! It just killed me thinking that the coughing and pain might be permanent because I know that It’s getting harder for her to deal with. I was able to go with her to her last oncologist appointment and asked him about a pulmonologist referral, and he brushed me off saying he didn’t think it will help. Then she was still having issues so I messaged him again and asked, and again he said he didn’t think it would do much good - even though he said that according the x rays, he doesn’t see much fluid that would be causing the coughing. We honestly haven’t been too pleased with her current oncologist, so I’m really hoping MD Anderson will accept her into a trial. I still worry that she won’t have “progressed enough” to be accepted, and then I also worry that her brain Mets have progressed too much for her to be accepted. Since her brain Mets increased last month, she had to have radiation, and there’s a 1 month waiting period between radiation and a clinical trial - so basically you have to be “sicker” to be accepted into a trial but “not too sick”. I understand why there’s criteria but at the same time It’s definitely frustrating. I’m just keeping my fingers crossed she will be accepted, and she will find relief. Thank you both again for the encouragement though!! I really appreciate it! Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 26, 2019 Share Posted September 26, 2019 Most welcome Katum! Sounds like your Mom might wang to consider another oncologist-a curious one. Tom’s right about the pulmonologist, it’s definitely worth a shot. I forgot I had a few doses of Albuterol in the beginning too. I never had allergies but now the KC summer is just nuts with all the pollen so I’ve got Flonase on board- it’s been helpful. One of the nurses at my clinic put together an essential oil diffuser cocktail for me with Frankincense, lavender & orange. That helps to ease the congestion at night too. Patience and persistence pays off in the long run. Please let us know how it goes! Link to comment Share on other sites More sharing options...
BridgetO Posted September 27, 2019 Share Posted September 27, 2019 I would either push the onc for a referral to a pulmonologist, or, as Michelle suggest, get a new onc. Also, your mom might be a good candidate for palliative care. Some people think, incorrectly , that this is the same as hospice, but it isn't. A palliative care doc focuses on symptoms or side effects that interfere with a person's quality of life. Your mom's quality of life is certainly impaired by her symptoms. Best wishes to both of you. Link to comment Share on other sites More sharing options...
Katum31 Posted October 12, 2019 Author Share Posted October 12, 2019 Thank you for the replies and sorry it’s taken so long for me to reply, it’s been a rough couple weeks. Mom had her appointment with MD Anderson today to try to get accepted into a clinical trial again. Unfortunately, things didn’t go as expected. The CT scan today showed more masses in her lungs (including spread to the right lung), right pleural effusion (she had a pleurodesis on the left side a while back and no fluid on that side thankfully), and now fluid around her heart. There are also now spots on her liver that they believe to be cancerous lesions (although on her last CT scan at the other hospital they mentioned spots on the liver but didn’t think they were cancerous, so maybe there’s a chance they aren’t actually cancerous). Her MRI showed the lesions in her brain have also increased in number. We are honestly just So caught off guard by how quickly this has spread over the course of 1 month. So obviously at this point she doesn’t qualify for a clinical trial. The oncologist admitted her to the hospital to drain the fluid from her lungs and most likely from around her heart. The echocardiogram showed that the fluid around her heart wasn’t affecting the heart but she is having the toughest time breathing, has a terrible cough and is coughing up phlegm constantly, so even though the cardiologists say there’s not enough to drain, the oncologist said he wants to have it done - so I believe that will be done on Monday hopefully. Once the fluid is drained, we will get targeted radiation for the brain lesions, then they want to start her on a different chemotherapy agent (although I forgot the name). Apparently this one is extremely hard on the liver so she will have to have her liver closely monitored. After everything that has happened today, remaining optimistic has become increasingly hard. I honestly can’t imagine how a person can bounce back from this, but it happens so we remain hopeful. Hearing the oncologist say “I’m not going to lie to you, this is very very bad” was hard. I just pray that she eventually becomes stable enough to qualify for a clinical trial. I don’t know if that’s naive at this point. I know whatever happens, it’s going to be a long road but we are going to remain positive because giving up just isn’t an option Thanks again for being much needed support! I really do appreciate it! Link to comment Share on other sites More sharing options...
JCM Posted October 13, 2019 Share Posted October 13, 2019 Katum, I am inspired by your words. Especially that “giving up isn’t an option.” I feel terrible for your mom and what she is going through. I also think of my own daughter who is having to go through what you are experiencing by having a mom sick with lung cancer. I agree that symptomatic relief (palliative care) is most important. I take cough medicine with a codeine and that calms my coughing symptoms at night and allows me to rest. If I take it during the day it would make me sleepy but if I was suffering as much as your mom I would do it. I hope if I get to the point where I want to be out of pain and go peacefully that my family will support me and let me go. My worst fear about dying is leaving my daughter if I decide that enough is enough. Sending prayers to all of you, Jane (JCM) Link to comment Share on other sites More sharing options...
Steff Posted October 14, 2019 Share Posted October 14, 2019 Katum, I'm sorry to hear about your mom's situation. I agree, it's hard to stay optimistic sometimes. The good news is that your mom will probably feel much better after all of the fluid is drained. Don't be too surprised if it needs to be drained a few times. My mom had her pleural effusion drained probably 10 times over a year. She ended up being full of infection, which was the likely cause of the continuous pleural effusion. Although it was a pain to get it drained all of the time, she felt instantly better afterward - hopefully your mom will too. I am happy your mom has you for support during this journey. I know it's not an easy road to navigate, but you will get through this. We are here for you anytime you need. Take Care, Steff Link to comment Share on other sites More sharing options...
Katum31 Posted October 15, 2019 Author Share Posted October 15, 2019 Thank you for the encouragement! We found out yesterday that there are too many brain mets to do targeted brain radiation again, so they are having to do whole brain radiation this time (One treatment a day for 10 consecutive days). They also have not drained the fluid from around her heart yet (we believe this is planned for tomorrow), but they did drain most of the fluid from her right lung on Saturday, and she did feel a lot better. She just had her first WBRT today, and while she is doing relatively ok, she is feeling really down overall that so much is happening. Its just such a shock that she came to MDA on Friday thinking she might finally be stable enough to qualify for a clinical trial, only to find out the complete opposite. Im trying my best to raise her spirits - I put up pictures in her room to make it more comfortable. She really enjoys telling the nurses who everyone is in the pictures and all about her grand dogs lol. I just really hope that we begin to see improvements and things start turning around. WBRT really scares me, but I'm still feeling hopeful that her team at MDA will come through and find that winning treatment. Link to comment Share on other sites More sharing options...
Tom Galli Posted October 16, 2019 Share Posted October 16, 2019 Katum, WBRT is indeed scary but it can work. I'm sure the MDA team is top notch when it comes to treating cancer and related problems. I wish there were easy solutions. Stay the course. Tom Link to comment Share on other sites More sharing options...
Katum31 Posted October 21, 2019 Author Share Posted October 21, 2019 Thank you @Tom Galli! So far, WBRT is going well, though mom is definitely experiencing a lot of short term memory loss (although it could be a combination of WBRT, being in the hospital, stress of everything). They also successfully drained the fluid from around her heart. She has to have a drain in for 5 days to help drain the fluid they didn’t get out. Her cough is definitely a lot better. They also started her on antibiotics since her heart rate has been high and the mucus she is coughing up is thick, so they think she may also have an infection. She sounds and looks much better, so she is in good spirits again. I was reading the oncologists appointment note from last week and saw he mentioned that the brain lesions are “highly suggestive of leptomeningial disease”....which is incredibly scary. I’m really hoping that’s not the case. I’ve read that it’s possible that a high number of brain lesions can look like leptomeningial disease, so I’m still holding out hope that the WBRT does the trick, and mom can begin systemic treatment to fight the cancer. I spent the night in the hospital last night, and we had a great night doing face masks, playing scrabble, and watching the Astros play. She’s also increasing her food intake which is making me really happy. All we can continue to do is move forward and hope everything works out. Right now though, I’m very thankful for all the good moments and memories we’re still able to have! Link to comment Share on other sites More sharing options...
Tom Galli Posted October 21, 2019 Share Posted October 21, 2019 Katum, So very sorry that your mom’s symptoms have not eased, but glad she is eating and enjoying the Astros pennant run. I do hope the WBRT takes hold quickly. Short term memory loss is a typical side effect. Stay the course. Tom Link to comment Share on other sites More sharing options...
Steff Posted October 21, 2019 Share Posted October 21, 2019 Katum - I am happy to hear that you and your mom are making the most of your time together - even if it's in the hospital. Take care, Steff Link to comment Share on other sites More sharing options...
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