anybody with lung fluid experience?

[Arkait]

MBC lung fluid

I was given a permanen t drainage catheter in my right lung, two days ago, but the insertion hurt

terribly, and still hurts 48 hours later. I am taking just starting Letrozol) for Her negative, ER posibive MBC. Has Letrozol reduced or eliminated lung fluid for anybody here? Has anybody here had a permanent drainage catheter

and did it help, hurt?

[blms]

I wish I had more info for you and knew of someone that had drains, etc. but I do not and have not needed any of this to date. I am so sorry you are having discomfort. None of this stuff is easy!!! Such daily challenges! Plese keep me updated on your journey.

[Arkait in reply to blms]

Thanks, Blms. I am about to throw in the towel on this idea (catheter lung drain).

[Barbteeth]

Hi there

I had a pleural effusion when first diagnosed and I was very breathless

Been on letrazole since April and Ibrance since June..the effusion has gone and I can breathe normally and have more energy

I never needed a drainage catheter..sounds very uncomfortable..I would check with your doctor about pain with it..that doesn’t sound right to me

I wish you well with your letrazole and hope it gets rid of your lung fluid

Barb xx

[Arkait in reply to Barbteeth]

Dear Barb, VEry encouraging to hear that your pleural effusion "has gone" I can only hope for the same,

as I hate having the pleurex catheter in my back/lung. Thanks for sharing.

Mary in Maine

[fine1 in reply to Barbteeth]

My mother has same issue .she has started taking letrozole and ibrance for last 2 momths.she has breathing problems.before the diagnostic they removed the liquid.now onc has asked for xray after she finished her seocnd dose.

[Gemgardens]

I’ve had a pleural effusion in my right lung since 2014. During one thoracentis (lung drain) my lung collapsed and I was hoping that would stop the constant lung draining but it didn’t. I just asked my oncologist I’d I should get a permanent drain. He said if it really helped my breathing he’d consider it and I could have it if I wanted it. He believes the least amount of surgeries the better. It doesn’t seem to effect my breathing as much as it’s painful as I have mets in rib bones and now liver. I started on faslodex a few months ago but numbers kept going up. So I added Ibrance a month ago and had to stop on the 16th day because I couldn’t breathe. I see my doc Monday for blood test results & what to do with Ibrance. I had to jump through hoops to get the Ibrance and very disappointed that I can’t seem to tolerate it. Did your drain ever feel better?

[Arkait in reply to Gemgardens]

HI GEMGARDENS, Thanks for taking the time to share your experience. I have made complaints

about discomfort of permanent pleurex drain catheter in my right lung, but general opinion is

that it will gradually become less obnoxious (it keeps me from moving freely, robs me of sleep due to discomfort

lying on either side (have to lie on my left shoulder blade (catheter is in right lung, near right shoulder blade);

hurts quite a bit by late day..... HOWEVER, the alternate days' bleeding off of excess lung fluid has definitely

improved my breathing---a big plus, as I was very breathless just swallowing a glass of liquid ! Not to say I

am 100% better.

I am only starting Letrozol, under 3 weeks. No idea if it will help eradicate my pleural effusion,

I also taking Carnivora (an immune system booster, supposedly, from alternative care channels--

who knows if anything will help.) I am just starting out. Expect to live about 1 or 2 years, with luck. Trying

to get my affairs in order (self publish my poems, and my memoir, lol). Get my business so that my

only child can either manage it, or sell it. Very depressed, as I had planned to live to at least 89 like my

biological parents. Feel blind sighted. Didn't expect cancer back, for some delusional reason...(Stage III breast in 2013) Now stage IV lung..

[Gemgardens in reply to Arkait]

Hang in there Arkait, I got 4 years out of letrozole alone. I tried all the cancer pills at the time and letrozole seemed to have the least amount of painful side effects. I have since changed oncologists because I didn’t know we were trying to stop progression. I wasn’t sure what was going on & I didn’t know what to tell mu loved ones. Now I know what’s going on and I feel more empowered to help decide how to live.

This Mets is scary & Im grateful to have found this site. It gives me hope to realize rhat progression might actually stop for awhile. It’s good not to feel alone with the pleural effusions as well and to actually learn that it sometimes goes away! Peace be to you and let’s hope we learn more about facing the deep abyss together!

[Arkait in reply to Gemgardens]

Hey, Gemgardens, Nice to hear from you. I am feeling a little better past couple of days

(the discomfort from my pleurex drain marginally better) The nurse took out 300cc

of fluid from my right lung this morning, Breathing better, but still feeling handicapped

by the catheter. Nobody has a clue how long I might have to keep it in! Could be a year,

a nurse told me today (I had my stitches removed today, from around the catheter().

I still don't sleep well, lying down is the most uncomfortable position to be in, alas.

How are you today?

Warm best wishes, Mary in Maine