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Katum31

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  1. 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!
  2. 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.
  3. 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!
  4. @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!
  5. 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!!
  6. Thanks for the response and advice @Tom Galli! Im going with her to meet with her oncologist on the 16th - she has her second CT scan scheduled for that day, and we will determine at that time if we will be starting a second line treatment and/or clinical trial - we will also speak to her oncologist about a pulmonologist referral. In the meantime, she will start taking Mucinex to see if that provides some relief. Is there a specific type of Mucinex that you find to be the most helpful for you? Thanks again!
  7. Hi all! My mom, who was diagnosed with Stage IV NSCLC in Feb, has had a VERY persistent wet, productive cough that sometimes turns into a dry cough for a couple of months now. No matter what she does, she can't seem to shake it, and sometimes it gets so bad that she can't even get an entire sentence out without going into a coughing fit. She's gone through 5 rounds of chemo so far, has had fluid drained from her lung 4 times, as well as underwent a pleuradosis a couple of months ago. Her latest scan last month showed no fluid build up in her lungs, so the coughing isn't from that. She has asked her oncologist a couple of times, but he never gives her an answer as to what is causing it if there is no fluid present. No matter what she takes though, it doesnt help. Does anyone have any experience with this? Maybe have some remedies or medications that has helped for you that we could ask her oncologist about? She's absolutely miserable with the coughing, and I just wish we could figure out why it's there and how we can help it. Any insight would be great!
  8. 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.
  9. 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!!
  10. 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.
  11. 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!!
  12. 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!
  13. @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!!
  14. 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.
  15. 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.
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