Six months to a year (malignant pleural effusion)

Sarah. I don't have any experience either but we are here for you. Vent, rant, scream. I'm sorry for you and your mom. It must be agony to not be able to fix it.

Comes a time when you have to face the fact that enough is enough. Would she want all this extra procedures, drugs , false hopes. I pray that she either wrote down or told the family her wishes as end of life approaches .Making her comfortable w/Hospice should be a part of conversation w/her and her oncologists. Most doctors cannot guve an exact length of life in these situations. I am praying for her and pray your family discuss w/her and oncologist the best way to consider her wishes.

I am also dealing with malignant pleural effusion as a result of breast cancer metatesis. I have had three thoracentesis to remove fluid but it rapidly builds back up. I am on falsodex shots and tamoxifen in the hopes of reducing cancer. But coping with being unable to breath is difficult. Any suggestion? Anyone know the progression and / or prognosis

Another option to periodic lung draining (thoracentesis) would be to have an indwelliong catheter, such as Pleurx or Aspira.  It can be drained periodically at home and can be very effective along with systemic therapy.  Once the fluid dries up, it can be removed.

The other roption is a talc prrocedure whereby talc is inserted to help dry things up.  It requires a hospital stay and can be very painful.

Hopeing things work out well!

I was diagnosed with a pleural effusion in right lung in Feb 2014. Had it drained twice and had plueridisis (talc) procedure done. This wasn't too successful and ended up with pockets of fluid that couldn't be drained. I had also developed effusion in left lung. Also had that drained once and had plueridisis done under general aneasthetic. This was more successful. I had 6 weeks of taxol which didn't workk and then went onto letrozole. I was pretty ill for six months, very breathless, coughing, very week. I responded well to letrozole and have been been well this pwast nine months.

Bestbird, You are an amazing wealth of information on every thread i go on.

LindaF I had pleural effusions 3/2016 to the point that I had acute respiratory distress and Intensive Care. I had pleuraldesis with talc on both sides, with Ibrance-Femara-Xgeva, and lungs are stable with no effusions! I never saw the timing you mentioned and honestly am glad I didn't. Statistics are misleading and I try to avoid them.

I was both devastated and hopeful in discovering this
website.  Devastated because it was here
I learned that I could have malignant pleural effusion from early stage breast
cancer “cured” nearly 15 years ago.  And,
hopeful because it was here I learned that maybe this could be managed.

Initial symptoms (end of October):  coughing for a month after a cold and
increasing shortness of breath. Chest x-ray and CT confirmed large pleural
effusion and lower lung collapse.  Thoracentesis Nov. 7^th- 1 liter tap sent to
cytology:  Confirmed breast cancer
recurrence.  ER+ PR- (was PR+ positive 15
years ago) and Her-2 negative.   Thoracentesis Nov.16^th-  took 1 liter; small pneumothorax.  November 22-  FDG
PET-CT.  Mets to supraclavical/neck base,
hila and mediastinal nodes only.  

Consulted with local oncologist and oncologist
(researcher in ER+ BC)  in large metro
center.  Both feel that cancer is “wimpy”
and “indolent.”—except for the  impact on
lungs makes it more critical.  Recommendation: Arimidex (or Femara) and possibly Ibrance (since there is uncertainty
how receptor positive the cancer still is). 
Started Arimidex Dec. 15^th (what took 15 years ago for five
years without major side effects).  About
to get third thoracentesis (after 5 weeks) and will also test the pleural
effusion again for PR status.

QUESTIONS-CONCERNS

1. Has anyone had similar
   situation: MPE and regional node involvement?
2. ER+ but PR- and treated
   successfully only with an AI? 
   Ibrance also being recommended 
   as it could act faster and with more impact on lung area (and due
   to PR- negative status).  Have
   suggested Arimidex will not kick in for about a month. 
3. I have been told that should
   only have 3-4 taps due to possible loculation. 

Sarah and Linda E - for what it's worth I started stage 4 with a left pleural effusion, took Ibrance + faslodex + arimidex, and had it drained monthy 12 times at UCLA. My IR doc was not a fan of the talc procedure, so he just drained my left lung each month. On the last visit he said not enough to drain, and I never had to go back. Ibrance+fas lasted 18 rounds, I had 2 mos on Afinitor which did not work, and now starting month 6 on Abraxane which is working really well on bones and liver uptake - the pleural effusion never came back. Meaning I am over 2 years out with this and still working part time - giving you and others hope. Cyn - Ibrance can take 5-6 months to get rolling.

Hi,

I'm also speaking on behalf of my mom who has metastatic breast cancer that has spread to her lungs and bone. I know what you mean when you say you need to vent. I'm going to repost something from another similar forum.

"My mom was diagnosed with metastatic breast cancer on October 2017. She has been having recurrent large pleural effusions on the right side. She was getting thoracentesis every 2 to 3 weeks for the past 3 months, but recently (3 weeks ago) opted to get a Pleurx catheter placed instead in hopes that her fluid will dry up soon. Just 2 weeks after the insertion, she started having fevers, chills, nausea, and vomiting. I took her to the ER and she was admitted. They found an infection in her pleural fluid and pneumonia. She's been getting treated for the infection but found that her pleura was becoming fibrous and we are unable to drain her completely. Certain solutions were injected into the catheter (tpA) and it broke up the fibrin but now she's getting bright red blood out of the catheter. After a couple more days, they decided to inject tpA again since she still had fibrous material blocking the drainage. She was drained again with more bloody output. The doctors were saying that if she continues to have blockage, the next option is surgery, but she is probably not a candidate for surgery. I'm scared they're going to suggest hospice care soon.

I'm just wondering if anyone else is having complications like my mom is with the pleural effusion and if so, what solution was there to fix the problem? She was doing decent before the pleurx insertion, essentially was asymptomatic even with large pleural effusions, able to go out and enjoy her life. Now, she has an infection and has been in the hospital for a week. She barely has enough energy to walk around now. I'm afraid the pleurx might have been a bad idea...

I would greatly appreciate anyone with any input. I am feeling so lost and helpless right now. Wish I can make my mom go back to how she was before all these complications occurred."

I have been feeling so anxious and on edge for the past week while my mom was in the hospital. Thank you for listening.

So sorry she has not had good results with the Pleurex. Wonder if they need to dc until infection is cleared. Those lines get a lot more fibrin when there is infection. Maybe then could replace. Please let us know how she does. Is she getting up into the chair? It will help with just that activity and good for her Lung

JS527,

I'm very sorry to hear that you mother is having so much trouble. Unfortunately, with catheters there is always the risk of infection, particularly with our often compromised immune systems. I do hope they can turn it around as a PleurX can be a godsend in terms of maintaining quality of life.

I was diagnosed with MBC in December 2016 after they found a large right pleural effusion. In my case, the fluid kept increasing to the point where I was really struggling with shortness of breath. I was also losing a lot of weight due to nausea and my body working extra hard to overcome the breathing issues. I had a litre of fluid taken off on December 28th (which was then biopsied) but within a couple of weeks my lung was completely full again. They took almost three litres off my right lung with a second thoracentesis. At that point it was decided that we would try a PleurX catheter.

I must admit that had a lot of pain after the surgery, possibly due to the fact that I am quite thin leaving little fat tissue to cushion the catheter. However, after a few days recovery I was fine and had no issues with the catheter. However, the home care nurse came twice a week to drain the catheter and I did find that I was very sensitive to the draining. If they drained too much I would end up with pain, a lot of coughing and irritation in my lung. I could tell when they were getting close to empty and would have them stop. If they went too far, I would have blood in the fluid.

I had my catheter for five months and the fluid levels did not seem to want to decrease. It started to wane but then the nurse irritated my lung by over draining and the fluid shot back up again. But then, all of a sudden, in July we stopped getting fluid. We thought perhaps the tube was clogged so the surgeon pushed saline through. Bad idea! I ended up with a lung infection. There was likely some bacteria in the tube that was pushed into my lung. It took us a while to diagnose it as I was getting spiking fevers and then would be fine for a few days but I felt horrible.

One round of antibiotics didn't take care of the infection so I was referred to a respirologist who took fluid for a culture. We never did find out what the bug was but a course of two different antibiotics cleared the infection. What was interesting, through the course of trying to figure out what was going on, they found that at that point I only had small pockets of loculated (trapped) fluid and a LOT of adhesions in my lung. So every time I had the pain from the lung being drained my body was responding to the irritation by laying down scar tissue. They removed the catheter as it was no longer doing any good.

At this point I am doing very well. I have no symptoms of pleural effusion and have not had the catheter since last July. My right lung will never be 100% - the lower part is still collapsed and there is what they refer to as consolidation - but I am able to live my life normally. In fact, there has been a big improvement in the last month now that I am on Faslodex.

I hope things start to improve for your mother. I know it can be challenging but the PleurX is a real game changer if she is having recurring fluid build up but sterile technique for the draining is critical to ensure the risk of infection is minimized. I hope she can keep and get back on track.

Feel free to PM me if you have additional questions.

Hugs. Pat