mets to lung
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nopkin2019, Hello. Yes I have a catheter that the surgeon inserted a month ago. I was just diagnosed Stage 4 to lungs/bones a month ago.
I had pneumonia and then they located the pleural effusion and drained about 1 1/2 liters in the hospital. After the second drainage about 5 days later, the surgeon inserted the cath. My husband drains the fluid every 3 days for me. The bottles are 1 liter bottles and that is all they recommend draining. I can tell you it's not a difficult process, but I sure can't do it myself with MS. The first thing I would recommend is making sure the roller is closed before your first attempt at draining. Then open the roller up so the fluid drains into the bottle, but do it slowly and increase the flow based on your comfort level. It gets painful under my shoulder if the roller is open too far. There's a good training video on youtube.
This draining at home sure beats going to the hospital or other facility. I did find the cath uncomfortable to painful at times. I reported this to the surgeon who said because I am so small, that the cath shifts under my diaphram. So I've learned to not lay flat on my back to sleep and not exert myself using my right arm too much. Like I said it's only been a month and I suspect I will have this long term as the fluid has not lessened.
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irishlove, great advice! Thanks so much. I'm having it drained next week & will see how much they take which will sway my decision. Good luck & I hope you see improvement.
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irishlove, I just had another thoracentesis.Moved to every 3 weeks schedule & they take 1.5L. The last couple have really hurt as the lung tries to expand. Would a catheter help this after drain pain since it can be done more often, taking less each time? It doesn't seem like my chemo is improving this problem.
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I just got scan results and many of the nodules are either smaller or gone. But the report said that there is a new spot of “ground glass opacity.” Does anyone know what that means? I don’t see my oncologist until next week.
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AJ, I am no expert, and have not been diagnosed with lung mets, but I get scans several times a year. In 2020, my ct scan mentioned “ground glass opacity” in the lungs. I’d had Covid a couple months prior to the scan (before the vaccine came out) with a horrible cough for weeks and was still dealing with a few after effects from it. I asked my onc if that could explain the ct results (a few nodules had also increased by a couple mm) and she said not enough was known about Covid at that time to say. She said it was simply something to be monitored for the time being and was not concerned about the nodules as they showed minimal increases in mm and not a big jump to centimeters.
So I started doing deep breathing exercises. I found several I liked on YouTube that were simple enough to do several times a day. And I bought a harmonica and taught myself to play it, which also help my lungs! Scans since that time have not shown any further issues and the glass opacity comment never reappeared, so it must have resolved itself. Whether my breathing exercises and the harmonica helped, I have no idea, but it made me feel I was at least doing something to try to make a difference.
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Harmonica definitely sounds like more fun than stacked breathing exercises
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Thanks. So maybe I won’t be so worried.
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AJ, Sorry for the intrusion here (terminal radiation induced pulmonary fibrosis, under nodule surveillance but not diagnosed with mets yet.) Ground glass opacity is lung infiltrate that doesn't obscure the underlying bronchial structures while consolidation prevents them from being seen. Radiologists differentiate between them since they help pulmonologists diagnose and treat; both are signs of inflammation.
For anyone who wants to monitor/improve lung capacity a peak flow meter measures the ability to exhale while an incentive spirometer measures how deeply you inhale. Both can be purchased relatively cheaply and can give a good idea of everything measured on a pulmonary function test except DLCO. They have been useful to alert me to a need to contact my pulmonologist for a treatment boost before it develops into a full blown exacerbation. There are PF patients who play the harmonica or their old brass/woodwind band instruments which is helpful and more fun.
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Thanks Maggie!
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nopink2019, I find the catheter much easier to deal with and a lot less pain. Plus I drain every 3 days and so breathing is so much better. I started draining around 950 mil and now it's down to 450 mil. The GP checked my lung 5/4 and said it sounded clear. I am scheduled to drain 5/5 in the afternoon. It's so much easier being home to do this, too. The bottles were shipped to the house and my husband does this for me. If I didn't have MS, I could probably do this myself. Check out the video on line about Pleurex catheter.
I'm hoping to get down to less then 50 mil., as I believe that's the point you can request having it removed. No tub baths or swimming is allowed and I sure miss swimming. The cath stopped moving now so that's a great relief. Only time it bothers me is if I lay flat, so I make sure to have two good supportive pillows under my head. It take a bit, but I can now sleep on my side once again. I highly recommend this as the risk of lung collapse is extremely low compared to other alternatives.
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irishlove, thanks for your detailed report. I'm still waiting to hear from MO, but hope to get this done soon.
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Hi folks. Wondering if anyone may know when it's time to remove lung catheter. I'm down to 150 mil. of fluid after 4 1/2 days. It's slightly tinged in color, but not a great deal. Someone had said at 50 mil., but I haven't actually found that information in print.
It sounds like Ibrance has kicked in quickly, as I'm just about to finish week 3 for the first cycle.
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I never had a drain but I had 3 thoracentisis. My first 2 were 1300 ml. My 3 which was 2 weeks after starting letrozole was 400. Have not needed to have one since. I would check with your Dr. It does sond like it is time.
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I had a thoracentesis yesterday after only 2 weeks. They took 1.2 L but said there was quite a bit remaining. I meet with an Interventional pulmonologist on Monday to discuss a catheter. This draining so often is really getting me down. I'm sure Enhertu is not working, but we'll find out for sure 2ndweek of June when I have CT. After each thoracentesis I'm barely able to do anything for a day or two. How long after draining the catheter at home have you been useless?
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Hi nopink2019,
I don’t post often these days so apologize for being slow to respond to your questions. In 2017 I was diagnosed as metastatic with a large pleural effusion in the right lung. I had some fluid drained when they did the biopsy but it quickly returned. They did a thoracentesis but same deal, no time at all and I couldn’t breathe. Then I had a PleurX Catheter inserted and it was a godsend. I’m in Canada so homecare nurses came twice a week to drain it for me. Instead of the 3-4 litres of fluid I had, it would get up to around 1 litre and they would reduce it to about 150 ml.
I found after draining there was discomfort and coughing for the rest of the day but by the next day I was fine. I did have to watch the nurses to make sure they didn’t over drain the lung as it could cause quite a bit of pain if they went too far. It took about six months and then suddenly it dried up and stopped producing. I do think it took longer due to the irritation from draining - I make fluid!
Since then I haven’t had any problems despite the fact there has always been some remaining pockets of fluid in the right lung. Now I’m progressing and there is some effusion in my left lung which may be causing shortness of breath but so far no cough.
Hope this is helpful.
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sadiesservant-yes, very helpful. I have experienced the excessive draining once and it took several days to recover from the pain. Thanks for sharing your experience with me and best wishes to you
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nopink, In the beginning of draining 1 liter, I was very uncomfortable with pain in the collarbone area. If we slowed down the drainage with the roller, it took longer but the pain subsided greatly. Now that it has been 2 months, my pain has completely subsided, even with the drain controller wide open. It now takes about 15 minutes and I'm happy to report I'm down to 100 mil. as of today.
The oncologist said he will order at ct scan without contrast to look at the lung. If all looks good, I can have the catheter removed. I'm thrilled but anxious as it takes a few weeks to get a scan and I would need an appt. with him afterwards. Then another wait for an appt. with the surgeon. But oh I'll be happy to get back in that pool and swim. He did caution me that catheters do carry increased risk of infection the longer they are in use. I miss baths and the pool but not the trip to the hospital for drainage before the implant. Good luck and remember to keep it clean, dry and watch for infection.
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Hope you can get the drain out Irishlove. I was just given the all clear to resume normal activity which includes strenuous activity. I never had a drain. I did have 3 thoracentisis. All my fluid is gone and he said my lungs for the last to months have sounded clear. I am at about 4 months. 2 months to stop the fluid.
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brutersmom, What good news that you are getting back to normal activities (those strenuous workouts sound like fun). Keep on doing good and it will be a good summer. I am at 2 months since diagnosis. I'm so looking forward to the pool but it'll still be another month or so. The lungs don't seem to be giving me a lot of problems at the moment. The bones, well that's a different subject.
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Hello everyone. I hope that everyone is doing as well as possible and thank you for your expertise (and loving support).
Any other night owls still up? Can't sleep so doing research and reading on this thread, going back many years. I have a large 6 cm tumor in the pleural lining of my lung. Susaninsf was the only poster I found with an actual tumor in the pleural. I'm trying to connect with other posters who have had this diagnosis. Wondering what ramification this may have, ie: poorer prognosis, less likelihood of systemic treatment reducing tumor size and of course the risk of another pleural effusion.
One thing I found interesting is that the lab did not find malignancy in my fluid from the pleural. I watched the lab tech take at least 6 tubes and label them for testing. I did read that 47 per cent of the time it is a false negative when it comes to lab results on the fluid.
Well we drained the lung catheter today and only got 25 mil. out, after 4 days. As I mentioned in an earlier post, the MO won't let me remove it until after ct scan and next appt., which isn't until June 22. Does anyone know if it's safe to drain just once a week? I do not want to risk getting infection and really don't know if I'm at higher risk if I change the schedule. It was very uncomfortable draining today after having zero discomfort for the last few weeks.
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Irishlove. I had a 2 cm tumor in my pleura. They tested it when I had it drained. Mine was positive but the oncologist warned me that many times they come back negative and then they have to biopsy. However if the fluid is responding to treatment that is a good sign. As for searching the web don't read anything older then 2022. So much has change. All the old articles say poor prognosis. I found only one article that said that if the lung pleura mets are part of the primary diagnosis with the new treatments prognosis is no different then any other soft tissue cancer. Most people seem to get lungs mets late in there disease when prognosis is poor. As for draining my third thoracentisis was more painful then the first to do to a smaller amount of fluid.
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brutersmom, Thank you for responding and helping me to understand this pleural tumor business. Looks like we have a lot in common with this and micropapillary. I just finished my first cycle of Ibrance and started the second one today.
Hoping everyone is having a good response to their treatments.
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Irishlove do you know if you are her2 negative which is or her2 low? My her2 number is 1.4
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brutersmom, I am Her2-. That said the onco had only said when we talked about starting treatment, that I did not have to take chemo, unless that status came back positive. Frankly I didn't ask alot of questions as I was happy with the NO CHEMO route. I took chemo for 2 years for MS! It was Mitoxantrone and it really helped me a great deal. It also left me with low heart ejection rate prior to life time dosage, so we had to pull the plug (so to speak). I do have a small hole in my heart, although it may well have been there since birth. I am asymptomatic with heart issues. I take LDN, low dose naltroxone for MS.
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My chart says her2 negative. The after that is says 1.4. I did ask the Dr if that meant low and he said yes. I need to know the details. When I was first diagnosed in 2015. My oncologist wasn't that good. People either ll loved him or disliked him. He didn't seem comfortable answering my questions. I ended up requesting a copy of all my medical records so I could understand and make sure I was doing the right things. Went for a second opinion and he seemed bothered. My new oncologist loves to answer my questions.
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Hi Irishlove,
Sorry, I didn't see your post until now.
I have had multiple pleural lesions over the years - essentially since my first metastatic recurrence in 2010. I've never had lung mets, always just in the pleura (later liver and pericardium). I didn't develop my first pleural effusion until 2014 - it resolved on its own with change of treatment. I just needed one-off thoracenteses (2015, 2017) until last year. Last year I had a Pleurx catheter installed in February and removed in August.
To answer another part of your question, I went one month without any draining before the removal. We still changed the dressing 1x a week. My respirologist wanted to make sure the fluid amount was stable. He removed the Pleurx even though I still was "carrying" fluid because the fluid wasn't bothering me as much as the catheter and draining. The decisions were based on Xrays. Fortunately, removal worked out okay and the last of the effusion disappeared with my next treatment line.
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brutersmom, I understand the need to have information available to you to make good decisions. I asked 7 questions at my second MO appt. The MO was wonderful and supportive of asking questions. I'm still working on understanding my Pet Scan. It's just taking me some time to ask the right questions and be ready for the blunt answers. I've decided I do not want to know a guess at my expiration date. My beloved aunt use to say "You are not a loaf of bread with an expiration date on it". Some people want to know, some don't and I don't want to know. It's only been 2 months and I'm still adjusting to meds and the interaction between MS and BC meds.
newgardner, Ah thank you so much for responding. It really helps as yesterday I drained and it was awfully painful. So I'll just leave draining alone for at least a week and see. It truly felt like I was sucking the wall of my lung as the pain under in my shoulder was a 9 out of 10. I only have 19 days till cat scan and hopeful it will reveal all is clear. A surgeon had inserted my cath I assume he will be the one to remove it ??? Was your removal done under anesthesia or just a local???
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Irishlove. I get it. I was told by the ER doc when I was first diagnosed I didn't have long to live and I needed to get my affairs in order. My hospital attending gave me 30 days for readmission. All the oncologist that stoped in were very positive. I am curious as to prognosis but I am leaving that question for another time probably when one or two treatments fail. I feel like it is to soon to ask the question. I did ask him what the next step would be if Ibrance and letrozole failed. He told me there was seval options but he wouldn't say which one until he saw where it returned and whether he could do a biopsy. I see him on Tuesday and except for my first visit when I was too overwhelmed I don't have a list if questions. 🙂 He will probably be relieved.
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Hi Irishlove - my removal was done by the radiologist's Fellow just in the clinic and with some freezing. It was very quick and I was so relieved to be free of it. Good luck.
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Hi all. Hope everyone is having as good a day as possible with family and friends.
brutersmom, Geez don't you love how they throw your towel in with a MBC diagnosis by ER doc? Mine didn't tell me to get my affairs in order, but he sure did hit me with the news in a horrible way. I went to the hospital for what I thought was a bowel blockage (MS related) and he bought the CT scan paperwork to me in the hallway. The hospital was packed full and my cot (along with many others) was in the hallway. He didn't even make eye contact or ask if I had a loved one with me, before dumping the news on me. The whole lot of folks in the hallway heard it. My husband was in the ER waiting room. I noticed for the next 10 days of hospitalization, (I had severe pneumonia and very low O2 levels, plus pleural effusion that needed draining) some of the visiting docs and nurses did not make eye contact with me. One did give me the talk. Finally the pulmonoligist told me the biopsy of the tumor in the pleural of the lung was positive. First visit to my GP's office after release and the NP (who was on duty that day) gave me the talk. I asked for pallative care. She sent hospice to the house. There is no pallative care in this area, I've come to find out from the MO, but I certainly wasn't ready for Hospice. I hope to stick my tongue out at at a few of them in 2 years.
newgardener, Thanks for that info. I noticed the skin is becoming a bit discolored under that second skin bandage. I guess it's time to air the area out for an extended period of time.
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