Anyone here had a pleurodesis...?

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AnnieLNZ
AnnieLNZ Member Posts: 23

Hi

First I want to say thank you - I was diagnosed with MBC in Feb 2019 after 11 and a bit years from first diagnosis. After the initial shock - I meant hello did any of us expect this! I got busy and found this awesome forum which has made me feel far less alone and frightened :)

I've got liver, lung and bone mets. Started Letrozole (Femara) six weeks ago. Bloods including liver tests are now normal, tumour markers have been trending down. Today's CT scan showed tumours stable, but fluid still building in pleural cavity (I've had two thoracentesis prior to CT scan). MO suggested as fluid is still building a lot that maybe we should look at pleurodesis... I'm due to see him tomorrow to discuss but thought I'd check and see if anyone here had had a pleurodesis...

Thanks :)

Annie

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2019

    Hi Annie, and welcome to Breastcancer.irg. Sorry you have to be here but we're so glad that you decided to join the community.

    Until you get replies to your topic, you may want to try using the Community Search Tool with the keyword "pleurodesis" (without the quotes) to find others who may have posted about this as well. Using this feature, you'll see every time the word has been mentioned in a post, and can then check out the thread. Let us know if you need help with that!

    Best wishes,

    From the Mods


  • AnnieLNZ
    AnnieLNZ Member Posts: 23
    edited April 2019
  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited April 2019

    Hi Annie,

    I was also rediagnosed with a large right pleural effusion. They did a thoracentesis but the fluid quickly returned. At that point they inserted a PleurX Catheter to allow the lung to be drained at home twice a week. You should ask your MO about this option. It took about six months but ultimately I experienced a spontaneous pleurodesis and the fluid dried up more or less. I still have pockets of loculated fluid but it doesn’t bother me much. It’s my understanding that the pleurodesis procedure is not always successful so this may be an option.

    It does require out patient surgery and it was a bit painful for a few days after but the relief to my breathing was fabulous. You would need to be careful in terms of possible infection but that is not difficult to overcome. But your MO may be hoping that you will get relief once the Letrozole kicks in. Hormone therapy generally ilicits a slower response but are great once things start to respond.

    Hope your meeting with your MO goes well and things with your lung improve quickly.

    Hugs.

  • AnnieLNZ
    AnnieLNZ Member Posts: 23
    edited April 2019

    Thanks Sadiesservant :)

    I've been speaking with my MO plus the Respiratory team today and am due to have a consult the day after tomorrow re whether I go with a catheter (apparently they use one called 'Rocket' here in NZ, but said it's the same as PleurX) or pleurodesis. If I choose the former I should be able to get it put in that afternoon!

    I'm reasonably relaxed about a temporary drain - I had one after my mastectomy and you just kinda get used to it. And like pretty much everyone on here you get used to various needles and whatnot being poked into you. Plus anything that helps with the breathlessness has to be a good thing!

    Thanks again for your response - I hope all is going well for you.

    Best

    Annie


  • Bestbird
    Bestbird Member Posts: 2,818
    edited April 2019

    Annie, I hope this information about the three options for draining pleural fluid from my book, "The Insider's Guide to Metastatic Breast Cancer" reaches you in time for your doctor visit.  T(he book is available on Amazon in paperback and eBook formats, or in .pdf format free of charge by emailing me at bestbird@hotmail.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 thatinvolves
    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.


  • AnnieLNZ
    AnnieLNZ Member Posts: 23
    edited April 2019

    Thanks Bestbird :)

    I've had three thoracentesis to date so now the two options being discussed are an indewelling catheter and pleurodesis. I'm due to see the respiratory specialist tomorrow morning NZ time and expect I'll go with the catheter.

    Best

    Annie

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