Hi....I have just had my third pleural effusion in 2 weeks. All in all they drained out about 5 ltrs of fluid. I know that pleural effusions often return, but I hadn´t imagined them to return that quickly. Has that ever happened to you before? What did your doctors recommend? I just don´t want to be in hospital every week to have the fluid drained out. I would really appreciate some advice.
Christine
Hi Christine. I got drained once and when pleural effusion returned my onc recommended waiting to see if the fluid would reduce while I still was on Ibrance. It did. I still have some PE, but my onc doesn't feel it warrants draining. I have very little problems breathing, maybe that's why.Are you short of breath a lot?
Do you use a Spyro meter?
Anja
Hi Anja,yes, I was really short of breath and I knew that the fluid had returned because I felt the pressure in my right lung when I tried to sleep on the right side. It is horrible. Next week I have to see the surgeons and I´ll see what they can do.
What worries me is the fact that the fluid returns that fast. It doesn´t give me the time to wait for my new treatment to work.
I understand. Being short of breath always makes it worse. It was my right side also. I slept with a pillow under the edge of my right side. Causes of PE could be heart related or a pulmonary embolism as well. Have they checked you for those? I had a subclavian deep vein thrombosis which also contributed to the fluid buildup. I will now be on oof thinners for life, but that's quite ok
*blood thinners
They`ve checked my heart today, everything seems fine. I have had Ct and several X-rays of my lungs in the past few weeks. Suppose they would have seen those things.
Yes, they would have seen it. I'm So very sorry you're going through this as i know how worrysome it is. So hard to treat Pleural effusion. Let's hope and pray chemo will help.
I relax my shoulder and then I slowly breath in through my nose for 5 seconds....hold my breath for 2 seconds. Then slowly breath out through your mouth for 8 seconds. Repeating this 7 times, or as many as i feel like :)You may have problems with the 5 and 8 seconds, but do as many seconds as you can. I do these now a few times a day and when I'm laying down to go to sleep.
Thanks so much!
Sorry to hear you have been in and out of hospital so much with this.It sounds like they are thinking of doing the procedure where they glue the outer membrane and the lung so the fluid can’t build up.
The only thing I am thinking is that they need to get to the bottom of why it keeps filling, but you said your treatment hasn’t had a chance to work yet.
The breathing exercises won’t help a pleural effusion as the fluid is outside of the lungs, but I always advocate breathing exercises just to keep the lungs pumped up, and it is good for relaxation. Another good one is take a long breath in and at the end do a sniff. Make sure you don’t breathe out before the sniff!! This will pop open any little air sacs that have collapsed.
Let us know how you get on
Clare
Thanks so much for your message. I´ll keep you updated.
That is what I was told when my pleural effusion was drained; that being on the outside of the my lung, there was nothing I could have done to make breathing any easier except get it drained. They, the radiologist/doctor, told me it could be the cancer treatments and not necessarily the cancer. I read that it was possibly a side effect of chemo which is when it happened to me. With cancer and so many medications in our systems who knows. I am sorry yours keeps coming back so often and quickly. I only had a liter but I could barely walk 10ft. Good luck and keep us posted.
My mother also suffering from this.but other than lung mbc,she had traces of T.B.qnd as per doc ,this is the reason.as she started ibrance,immunity got week and T.B got detected.please get it checked for this as well.tx
Before they were thinking of gluing the memebrance ,but now they are not doing it.
Hi Tinita. You do put things into perspective for me: I had one liter drained and I thought it was a lot.My effusion has got bigger again, and I am scheduled for another drainage this coming Wednesday.
I was surprised that it came back considering how well I am doing with H&P. So here is my understanding:
Cancer cells block the pores on the pleural membrane thus fluid accumulates. To my understanding, there's a chance for a scar tissue as a result, which means that even if your cancer shrinks away, pleural effusion may reoccur.
I intend to ask my doctor what possible preventive treatments they may have - aside from a permanent drain, which I personally wouldn't like to have, or a fix if and when the recurrence is not diminishing. If I'll have an interesting information, I shall place it on this portal.
Meanwhile, I wish you easy breathing and fast recovery, surprising how important breathing is, isn't it? 🤣
Thank you very much! Yes, you notice how important breathing gets when you gasp for air all the time. All the best for you!
Actually, I have been thinking about a permanent drain until my treatment hopefully starts to shrink the cancer. I am so tired of having to go to the hospital once a week to drain out the fluid. It weakens my body and my lungs need some days to recover.
Hello Tinita, promised you an update after my procedure: I am now with a permanent drainage. They don't agree to drain it every month or three or four . They have no time for that. So a few things to know:1. It not a horrible - but is unpleasant procedure
2. It will follow days of pain, maybe bedbound.
3. If both your lungs are fully expended, there's a procedure on gluing them together. It requires hospital time and is a painful procedure, I am told. However, it does solve pleural effusion issue.
Goid luck with whatever you do.
I thought to provide a name for the procedure, it’s called PLEURODESIS. It is done through a chest tube and yes it is painful, not the tube but the talc that is injected between the chest wall and the lung (pleural space). I was awake for this procedure and I only lasted through half the talc injection. If possible I would suggest sedation.
The procedure I'm talking about is glueing both lungs together to avoid fluid accumulation. It is only possible if both lungs are fully expanded.
Onie54, I was told that it is done under sedation. Why is it so painful, and for how long? Does it work (worth the pain)?The procedure of placing the permanent drain is equal to having a regular drainage, but afterwards; boy oh boy! I was not prepared for that. I went in to feel better, and returned home in pieces. Big pain, will probably last a few days and hopefully is worth it. The purpose is to drain a little every few days, because I couldn't have it all drained at once. I am told that the average removal time is 60 days. By then then lungs remain fully expended.
Onie54, please give more information about PLEURODESIS: is it working (I'm told 70%) , how long did you suffer from the procedure , how long ago did it happen and how are you doing now please..
There's a clinical trial for a new procedure at my hospital. Once I gather the information, I shall share with you all. It's supposed to replace the PLEURODESIS; supposedly easier and less invesdive.
Good luck ladies.
Onie54, how long ago was that? Why weren't you sedated? Was the treatment complete? How are you now?
Hi EZSZ
The procedure was done in 2018, the day following my having a lung biopsy VATS . I was still in hospital with a chest tube, not really grappling with the whole diagnosis when my surgeon told me not only did I have the lung nodules but the pleural space also tested positive for cancer cells. She immediately went on to suggest that I consider this pleurodesis and that most people tolerate it well. She advised that it was preventative in nature as patients with cancer in the pleural space sometimes go on to develop pleural effusions.
I can tell you I did not tolerate it well and she had to stop. I did not reconsider the procedure after that. On later CT scans she mentioned that there was some adhesion with the amount of talc she injected.
My sister who is a nurse practitioner did not understand why they didn’t do the procedure while I was sedated in the OR the previous day. I like to get my files on the care I received and we were able to see a notation that the talc was not in supply that day but miraculously they had it the next day???
I did have a mild PE after surgery and it took several months for it to go away but it did and 3 years later still no PE.
I’m on ibrance 100mg and letrozole with Zometa every 12 weeks.
Sorry that was a long explanation.
Susie
Thank you Onie54 for the detailed reply. I've been going through he'll the last couple of days since a permanent drain was installed. Any insight in helpful. I take it that you are HER2 negative, I am TPBC.
You are correct, ER/PR +, HER2 -,
I wish you only the best in recovery, hopefully things settle down so you can be more at ease , sending 🤗 hugs
Grateful. Back at you. I'm on the watch for ErSO, the most promising solution in the making for Estrogen positive. Let's hope that clinical trials will advance fast, and we can all enjoy a better quality of life.
I have had ER/PR + BC and separately, Her2 + BC. One in each breast. It was the HER2 + Chemo that I was on when the pleural effusion developed and no cancer cells in the liquid drained. That cancer is cured (clean for 2 yrs anyway; terrified I could have 2 MBC's) but my original BC is PR/ER + which became MRC, 2 years after my original early stage treatment. So, after all that, I wanted to say I am very interested in the ErSO. Can you tell me more about it? I am on Ibrance/letrozole/Xgeva right now, about 5 years.
Glad to hear you've been around for 5 years and going strong. ErSO, for E+ BC, MBC, medicalnewstoday.com/articl...
Talked to the doctors today and they proposed pleurodesis next week. I´ll give it a try. Hopefully it will work and won`t be too painful.
Whole procedure will be under general anesthesia
Good luck Tinita. My doctor says the chances are 70%. Let's be optimistic. If it works, definitely worth it.When is your procedure gonna take place? Will think of you that day. Please do share your experience afterwards. Fingers crossed.
Thanks so much. The procedure is gonna take place on Tuesday and I´ll have to stay in hospital for a couple of nights. Yes, let´s be optimistic and hope it works! I´ll keep you updated! All the best for you!
Hi EZSZ, I had my pleurodesis about 5 weeks ago and it has helped a lot. The fluid has not come back so far, the breathing is a lot better now and I am not short of breath any more. The whole procedure was absolutely worth it. Wishing you all the best!
Christine
Thank you Christine for sharing your experience in the purpose of encouragement. I agree that the PleurX helps, however, it has been really hard on me living with it. I am looking forward to it's removal, hopefully on October 1st.
I would also like to add a note about my lack of participation: I am a highly emotional person, compassionate beyond my ability to control. Every sad story breaks my heart, and I instantly feel frustrated that I'm unable to save that person, as for some reason I feel that it's my responsibility. So I often choose to avoid reading if the title has a sad insinuation. Sorry.
Also, I am triple positive, while most of you are at least Her2 negative judging from the treatments, so I have nothing to contribute.
I care about you all, each and every one.
Hi Christine, I was drained once for a pleural effusion. If it comes back again, my oncologist recommended me to a Dr. who can preform a Talc Pleurodesis. In this case they effectively blow talc into the region which causes the pleural lining to close up and prevent fluid build up. I attached a link that may help or you can google for other links. mesotheliomaguide.com/commu... strong and blessings !
Julia
I am sorry to hear you're dealing with pleural effusion. I had pleural effusion when I was diagnosed in 2011 with MBC.
Below from my book, "The Insider's Guide to Metastatic Breast Cancer," which is also available as a complimentary .pdf, is an excerpt about options for draining pleural effusion. For further information about contending with side effects, approved treatments by MBC subtype, and cutting edge research, visit https:insidersguidembc.com
For patients who have pleural effusion, there are three methods of draining the fluid to provide relief:
Indwelling (Pleurx or Aspira) Catheter: This is the surgical insertion, under general anesthesia, of a small tube placed temporarily into the pleural space that allows the patient or his/her family member to drain the fluid into a bottle as needed. Patients with an indwelling catheter are fully mobile and are not “attached” to the draining bottle except when draining the fluid. Once there is no more drainage at all, the catheter is removed either in the doctor’s office or an outpatient procedure. Overall, indwelling catheters seem to help prevent the fluid from building up again, provided that the patient’s systemic treatment is working. The Pleurx catheter works via suction, and the newer gentler model is the Aspira catheter, which is a bit less uncomfortable because uses gravity instead of suction for draining.
Pleurodesis (sometimes referred to as a “talc procedure”) is a process in which substances, such as talc, are used to try to get the edge of the lung to stick to the chest wall to decrease the chance of the fluid returning. Although this procedure seems to help prevent the fluid from building up again (provided that systemic treatment is working) it can be painful and usually requires a brief hospital stay. Some patients have reported discomfort months and even years after the procedure. In rare cases, the procedure may fail altogether, rendering it impossible to drain the fluid thereafter because it becomes trapped in a honeycomb of many small pockets (called “loculations”). Of all options for draining malignant pleural effusion, this appears to be the most risk-prone.
Thoracentesis (sometimes referred to as “tapping”) is an outpatient procedure that involves placing one needle per required side into the pleural space. Although local anesthesia is administered, this procedure can be uncomfortable and may cause scarring if repeated over time. The procedure also does not hinder fluid buildup again. These tips may make the procedure less uncomfortable: 1) Request a numbing agent before the needle is inserted to feel more comfortable after the procedure. 2) Request that the fluid to be withdrawn slowly in order to avoid low blood pressure or a “fainting” feeling afterwards. 3) Lean forward with a soft pillow supporting your head and upper torso while the draining is underway via your back.
Warning: If a patient is experiencing shortness of breath but the doctor cannot find anything in the lungs that is causing it, the patient should be checked carefully for blood clots as well as for cardiac issues. Either of these issues may cause symptoms that appear to be lung related problems, when in fact they are not. Additionally, a condition called “pneumonitis” (inflammation of the lung), can cause shortness of breath and coughing. Since pneumonitis can be caused by cancer treatments such as chemotherapy and radiation, MBC patients may be particularly susceptible.
I too have had trouble with fluid on my lungs, and had 4 thoracentesis (two of which required hospitalization just to get me in) before they installed a permanent catheter that I can drain myself a week ago. I was not eager to do it, but draining is relatively easy and gives almost instant relief—and I don’t have to go to the hospital! My husband has been wonderful about helping with it and dressing the site (after having been educated by the nurses). I am currently on O2 all the time, which is a challenge. Let me know if you have any questions!
Is there a reason why you chose a permanent catheter and not a pleurodesis? How long can the permanent catheter remain in your body? Are you feeling better at the moment?
I wasn’t given a choice of pleurodesis…this is the first I’ve heard of it! I think the “permanent catheter “ can stay in your body for months….not sure what the limit is. I DO feel better…the draining is a little uncomfortable and maybe a little gross but fun, and I feel better able to breathe immediately afterwards; it’s also nice not having to go to the hospital!
Hi Tinita, I am currently sitting in hospital with a drain in my lung awaiting surgery called a pleuralcedisis to stick the lining of my lung down so the fluid cannot accumulate anymore. Not sure if this suits your situation though. Stay well.
All the best to you. Please let me know if your treatment was successful!
Which treatments are you on
Take Doxycycline 100Mg X 2 daily for 2-4 weeks and swimming in the pool every day to keep the air in, will expand lungs.
Nightmare 3 weeks but recovering
Anyone have info about cardiac effusion with mbc?
Ibrance stopped working, lots of pain in back 
Third Faslodex injections
Abrazane and fluid around lungs
