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  3. I've survived two effusions. Both occurred after my pneumonectomy. I told my chemo nurse about difficulty breathing and that led to an immediate x-ray and the effusions were drained off at my cancer clinic. So, in my experience, they can happen quickly but relief was near immediate after drainage. They are caused by irritation in the space between the outer lung tissue and interior chest wall. This space is called the pleura, thus the name. I was already at stage IV with progression after surgery and receiving chemo. My oncologist felt (hoped) the chemo would kill cells in the effusion,
  4. Yeah, one thing that helps me is to remember that radiologists' jobs are mainly to identify and "flag" any abnormalities. They are NOT cancer experts. They can say stuff like "X change in the scan indicates probable metastasis" but they are going on statistical probabilities. Your oncologist knows your history, your treatment, and all the other factors that go into figuring out what's actually happening with you and your cancer. Hoping you get some good news soon!
  5. Hi Deb and welcome. I'm sorry to hear about your husband's diagnoses. I see why you call this a whirlwind. I've never been in a situation like yours. The nearest iwas when my mom was having ongoing chemo every 3 weeks for metastatic breast cancer. She had neuropathy that was causing her tobcome disablee and she could no longer walk and she was beginning to lose the use of her hands. I lived hundreds of miles away, so was not her caregiver, though I was her health care power of attorney. She didn't have dementia prior to treatment, but after months of this chemo, she was getting increasingly me
  6. Thank you Lisa for the kind words. I am not worried about the catheter down the line, we are willing to do whatever it takes to see her more comfortable. I am praying the treatment can keep her stable for a long long time and I hope she is one of those people that can have it as a chronic disease or even NED ❤️
  7. I will male sure next time my onc appointment comes after the report is released. That should be the right sequence. Thank you for the kind words.
  8. Hi, Thank you for letting me join this group. My husband was diagnosed with Stage IV Adenocarcinoma in October. This has really been a whirlwind! He has fluid on his lung and I drain it at home. He had mild dementia before he began treatments, but it seems to be getting worse. I am wondering if anyone else has had the same experience as we are. His oncologist seems to be ready to stop treatments and put him on hospice due to the dementia. I had always heard that oncologists always have another plan...they always have another treatment. He has not re scanned my husband to see if the Keyt
  9. Hi Gary, The shrinkage is good news for sure! I understand your frustration with the radiologist report coming before the oncologist appointment. My experience has been that the radiologist releases the report through the portal and it all seems so much more serious to me and difficult to interpret! I become frustrated because I'd much rather hear my oncologist's interpretation before it gets released to me. But, the system isn't set up that way. Best, Deb
  10. I can’t really complain. When I had him paged at 6:30am three weeks ago, he called me back in 5 minutes. And when we drove over after my stroke and the fiasco at our local ER, he managed to get me admitted when they didn’t have any beds available —and had practically every specialty visit me. They left no stone unturned. This was just so last minute and came at (as usual) the worst possible time.
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  12. I personally have not had any pleural effusions, but have heard of many LC patients who do and many do have a catheter placed so that they can have the fluids removed in an at home setting (with assistance). I also believe, that like all forms of metastatic Lung Cancer, that patients can survive for long term, as long as they are being treated and I hope very much as long as they an continue to address the fluid, that will be the case for your Mom. Best wishes to you both...
  13. Lisa Haines

    It's official

    Oh no! I hope very much your son will do well and will soon be on his way to recovery! It certainly seem the the younger folks are getting though Covid without too many problems. Hope you are safe and he's better very soon....
  14. Has anyone heard of someone or know of someone that has survived malignant pleural effusion beyond the 3-12 month general prognosis?
  15. Hi Lil, I was nice (although bittersweet) to meet you on our Friday night Zoom. Your story about not having insurance is really so upsetting to me and I truly find that you will find a way to get the care you need now to begin treatment. I was happy to hear you've been approved for coverage through the ACA effective In January, but truly would have HOPED they had some type of emergency plan for someone in your situation. I know I mentioned a bit about SSDI and SSI - and you may want to contact your local Social Security OFFICE asap to find out IF there is anything they c
  16. Ditto to what Lou has indicated: at this point about half the people in my church have tested positive, so far so good for the congregation. The youngsters have breezed through in a few days, while some of the adults took a little while longer. Hang in there! Michelle
  17. Thanks Tom: That's already in motion. What makes it even more difficult is that the oncologist makes the final decision on the infusion and that happens the same day he looks at the CT scan. Now that my cancer is a lot smaller, I must see the results in the right sequence. Thanks again.
  18. Gary, I firmly suggest you realign your oncology consultations to occur after the radiologist report on your scan is complete. You'll need a medical authority to explain the results. Stay the course. Tom
  19. Patrick, I'm one of those folks who had a complete pneumonectomy of my right lung. That was in 2004 and I'm doing quite well. Glad to learn you are out of the ICU. Do follow the instructions of the respiratory therapist in using the spirometer and cooperate with physician therapy and lap the ward in earnest. Stay the course. Tom
  20. Hi everyone, thank you for the replies. I’m not so concerned with the eventual need of the catheter as I am concerned about the prognosis I am reading when it comes to malignant pleural effusion. They are sending the liquid to test it but the lung specialist said it does look malignant.
  21. Dang. You know that aside from the fact that Doctors are saving my life, I don't particularly like them. Peace Tom
  22. Thanks, Lou. As it turns out, I did not have any additional episodes yesterday or (so far) today. Coughing is also very limited. However, now my ankles are swelling just like they did in the beginning, which is when I had a large pleural effusion. Suspect that is the case now, as well. That's discouraging, as we had to delay my 4th infusion for two weeks already due to immune-mediated colitis (side effect from Keytruda) and high dose prednisone (which interferes with immunotherapy), so I'm afraid we've lost ground. Scans on Tuesday will tell the tale, but I'm not feeling good about it.
  23. Gary, It sounds to me like things are headed in the right direction, nodules are shrinking, air movement improving and a remaining mass is likely to be scar tissue. The thyroid enlargement might be of concern, but if we've learned anything with this darned disease it is to wait until we have confirmation of something. I pray that you'll keep seeing improvements with each scan, that is what we all hope for. Stay strong, you are doing a great job. Lou
  24. LouT

    It's official

    Tom, Good news is that about 99%+ are now recovering from this disease so hang in there. Let us know how he progresses, but as I said in another post on this topic; once my son got the proper medical care he was up and around in about 4 days. He needed about another week to ten days at home to feel normal again, but has had no other side effects. And...I told him that if I get this and he doesn't donate antibodies to me that he is out of the will. Lou
  25. Patrick, Yes, that was unexpected. But, there are people here who have also had a full lung removal (pneumonectomy) and are doing well. You'll be hearing from them soon. It's a good sign to hear that you got out of ICU earlier than expected. I'm praying for good things for you. Please keep us updated as events unfold. Lou
  26. This was my first scan without Carboplatin. Oncologist findings: Shows internal improvement in right sided tumor. He also pointed to quite few white holes in the affected are and explained that the air is now flowing through the blockage which is a good sign. He also pointed to an area and called it probably scar tissue. I thought I was too old to live with probabilities and wanted a confirmation. He said we know from experience that it is likely scar tissue and a biopsy requires an open surgery. We will wait on next scans to see if there are changes. Radiologist: Two
  27. Sabacat, I have never experienced this but the advice on keeping track and seeking medical intervention (ER) sooner rather than later sounds right to me. Lou
  28. Zuma, Welcome to the forum. You'll find answers to many of your questions here from people who have experienced the disease and a diverse form of treatments. I would recommend that you inform your medical team of any supplements that your Mom is taking as they might have an effect on the efficacy of whatever protocol they decide would serve her best. Let us know how we can continue to be of help. Lou
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