pleural effusion experiences?

[Arkait]

I am still looking for company (another gal with metastatic her neg, ER positive

breast cancer(diagnosed 2013) that has moved to my lung causing pleural effusion which I

have to have drained every other day for past month---newly diagnosed in Dec.2018\

). I'm just starting Letrozole for

past 5 weeks, monthly bloodwork & x ray show not much change yet.

I have pleurex catheter in affected lung and it's uncomfortable sleeping on it. I am

told half the time the effusiondries up, and catheter can be removed,

But for past 3 or 4 weeks I have drained betwee 400 and 500ml

every two days. Anybody have this experience,?

[Red71]

I’m sorry to hear what you are going through. I’m not having any lung problems but I understand the feeling of not wanting to be the only person with this problem. Misery likes company as the saying goes. I hope you find someone else going through this. Elaine

[Arkait in reply to Red71]

Thanks, Elaine.

[Halfpint2]

I’m ER/PR+ Her-

I was diagnosed in 2005 and had chemo and mastectomy. All was well until I was diagnosed with metastatic bc to both lungs and pleura of both lungs. My scans lit up like a Christmas tree. I could only have chemo. No radiation or surgery since it was in pleura. I had massive amounts of chemotherapy (Gemzar, Taxol and finally Taxotere that nearly killed me) but everything shrunk considerably or even became so small that it doesn’t show up. I’m now on Ibrance and Letrozole and doing great. I’ve been stable for nearly two years. Please check into a supplement called Cell Stop (you can google it). It has great benefits. I’m sorry you’re going through so much difficulty. I did not have to drain any fluids which has been a surprise to my doctors. Hang in there, it does get better. Faith in God is my strength.

[Arkait in reply to Halfpint2]

Hi Halfpint2. Thanks for sharing your experience. will check into Cell Stop, thanks.

[blms]

Remissiyfir 20 years from stage 3b. Then MBC with disgnoyjust in pleural fluid below left lung only with nodes attached to lung linings. My initial diagnosis was from Testing that drained fluid. High Er, PR positive, HR beg, highly aggressive, lung collayeith drsin but did come back up. Fluid has been gone for almost a year. For that and all else I am eternally grateful . Do I can’t rekate to the tubing. My journey has been in every way to boost my immune system before all else. I do multiple things for that and so far my body has risen to the fight. Where do you live

[Stage4Gir]

Hi Arkait,

I too have pleural effusion on left lung. That's how my Stage 4 was discovered. Tomorrow I go for my 5 lung draining in 5 months. It keeps coming back and I have been considering the catheter but I'm a little scared of it. Also the last 2 times I had it drained were VERY painful....have you had that experience? The Dr's seem to act like they don't know why but I've read there can be some air that causes this. I've had BC since 1996, every 10 years it comes back and I've had a mastectomy, and 2 lumpectomies but this 4th time I was told it's stage 4. Last week cat scan showed more spread, 2 tumors, so I've started ibrance and was already on Letrozole. I too was trying to find someone else with the same problem, so I'm here raising my hand saying me too!

[Arkait in reply to Stage4Gir]

Stage4Gir, I am still draining one lung every other day, but amount of fluid is dropping slowly, from 400 to 500 ml now to 325 ml. It is only one lung

so far. I had a "permanent" catheter inserted and at first it was very uncomfortable (lying down only had one position I could comfortably sleep on).

Now, however, it doesn't bother me and i can lie on left or right side, or stomach, so long as I am not pressing directly on the square

plastic end of the tubing Draining is painless although the second I feel it pulling inside, I have the nurse stop the drain. (I get nursing

help, because the tube goes into my back, and I can't see it attend to it.) Without the permanent tube, it would be very painful to insert

tubing each time I need the lung drained, so I recommend having a catheter inserted that will stay for as long as needed (draining is

supposed to eventually dry up, no exact time, however. It did hurt to get it put in, so I recommend general anesthesia. But after a week or so,

it gets progressively less uncomfortable. At first I wanted it back out, but I remained patient and it has gotten a lot less of a problem.

It's certainly better than having a tube inserted each time, anew! With it, draining is quick and painless. Hope this reassures you.

[Stage4Gir]

Thanks Arkait! This is very helpful! So glad to hear your fluid is drying up too, that is my dream because apparently I have a very large effusion and they can only take 1.5 liter at a time out and I always have to go back. Maybe I will consider the catheter now.

[Arkait in reply to Stage4Gir]

1.5 liter is a lot. With a "permanent" catheter, you can get rid of fluid every other day, and the drawn amounts will be

much less, and will keep your lung free of excess fluid on a regular basis. Please keep me posted.

[Stage4Gir]

Thanks again Arkait. I just went for a draining today and had the same pain again...so bad they had to stop it at 950 ml. I'm hoping that was enough for improvement and now I'm home in bed resting as it usually takes at least 24 hours for the pain to subside.

[Onie54]

I was diagnosed with lung nodules in April 2018 and it was confirmed in May 2018 during lung surgery for a biopsy and a broncoscopy confirmed cancer cells in my pleural fluid as well. My surgeon wanted to perform a procedure called Pleurodesis during the surgery while I was under anesthesia but they were out of the talc. She got the talc the next day and tried the procedure while I was awake but I couldn’t take the pain. Although I couldn’t complete the procedure it was somewhat successful in that I have no more effusion for now.

Pleurodesis is a procedure whereby a talc is inserted through a chest tube in the space between your lung and chest wall (the pleural space). It irritates both linings causing them to adhere together so that no fluid can build up. Since my procedure was only partially successful what I now feel is a tightness when I take a deep breath (right side only - procedure side).

It is worth asking about the procedure to see if it is option for your situation.

I have been on letrozole & Ibrance since May 2018.

[Stage4Gir in reply to Onie54]

Hi Onie54,

Can I ask what side effects you experience on letrozole and ibrance? You seem to have been on it long enough to have some experience with it. I am on those, but the ibrance only for 12 days now. Fatigue! ugh.

I do know about the pleurodesis, but I'm afraid to get it done. Scaredy cat here I'm hoping the ibrance clears it up in a few months?

Thanks in advance.

[Onie54 in reply to Stage4Gir]

Hi!

I’ve been on the Ibrance/letrozole combo for a year now. One month on 125mg and the balance of the year on 100mg. Just these past 2 months I’ve had to wait 2 weeks between cycles. That will be the way forward for me now as the neutrophils are not coming back up in a weeks time. Even at 2 weeks this past time I was at 1200 for neutrophils. So.....75mg may be in my future.

Side effects for me have been fatigue, shortness of breath (although my wedge resection and the pleurodesis may also be contributing to this), hair thinning and constipation. I also find that it takes longer to get over a cold or an infection (a recent sinus infection floored me).

What was unique with my diagnosis of cancer in my pleural space was that prior to my right side VATS wedge biopsy i had no pleural effusion (left or right side). It showed up after surgery on my right lung. It took anywhere from 5-6 months to clear up. Maybe the Ibrance helped it along?

As for the pleurodesis, you’ll have to decide if it’s an option at some point whether the quality of life it can provide is worth it. All procedures have their pros and cons, we just have to decide which ones make sense for each of us. As for getting it done I would ask for anesthesia so that you don’t feel the talc being put in.

Hope you do well with the meds. Keep us posted. 💕

Susie

[Stage4Gir]

Thanks so much Susie!

[Fighteragain18]

I had a pleural effusion to my right lung didn’t know I had it really apart from my hb was 126 a min and I got out of breath, I’m a fitness instructor so I knew something wasn’t right

Ct scan showed it and then I was told boom you’ve got secondary bc after 10 years

I had a full mastectomy n recon followed by chemo and 10 years on tamoxifen

Anyway I’ had my fluid drain and had it talced ( forgotten the procedure) 4 litre came off it

I’ve no catheter and my fluid hasn’t built back up infact oncologist said the remaining fluid has decreased

I’m on inbrance letrazole and postal

Keep me posted

Much love

Jo x

[Arkait]

Dear Jo, glad to hear no further fluid build up. I have been removing

fluid from my right lung since first discovered, (Feb 2019), but it is

decreasing, thank goodness and breathing (shortness of breath) much

improved. First amount removed was about a liter, so four litres sounds a

lot. I refused the talc procedure, so I still get fluid, but, at least, as I say, it

is going down a lot (half what it was). Currently averaging 75 ml per day.

Im still on just Letrozole since Feb 2019 (but I also take Carnivora, Graviola,

laetril (raw apricot pits, 6 a day); turkey tail mushroom supplements, and

some days, green tea. I plan on adding more supplements. GOOD LUCK TO

US BOTH Mary In Maine

[Gingerann1]

I don’t have the drain but in the same situation otherwise. I hope the targeted therapy works to the point that you won’t have to have the drain. I was diagnosed in Dec last year with pleural effusion, left lung. Had thoracentesis to drain and take Ibrance and Faslodex shots which seems to have stabilized everything. Happy to be an ear if you need to talk about, etc.

All the best as you navigate this journey we share.

[Crystal34]

I also have fluid build up on my right lung due to BC Mets in lungs. I’ve had it drained 3 times now. I have to get it done about every 2 weeks. My doctor has recommended getting the catheter but it makes me nervous. I’m taking letrozole and Ibrance and worry about the site getting infected when my white blood cells are low from Ibrance. I’ve read that some women get infections from broken skin while taking it due to a weakened immune system This is my 2nd week of my first cycle. I started the letrozole about a month ago. I was hoping the meds would stop the fluid buildup. It has slowed but not stopped. Has anyone gotten an infection while taking Ibrance and using the pluerex catheter?

[FHgirl]

HiI was in hospital in June for pleural effusion in my right lung. They drained 2 litres of fluid. I went back a few weeks later when they drained the left lung (1 litre I think) and talked about the options if it came back - the talc or the catheter. Because we were going on holiday, I asked for another review of the right lung to make sure if it needed to be drained before holiday, we would have the reassurance. Went back to clinic (im in the UK) and the consultant said there was nothing to drain!

I was so relieved as so far I'm on my 4th line of chemo and the mets in my lungs haven't responded with the previous 3 chemos although mets elsewhere are stabilising. I'm now on Trodelvy and will have a ct scan when I get back from holiday. Fingers crossed.

Good luck to all.