Bronchorrhea and Surgical Biopsies - 1254339

ejb58
Posts:10

Hello GRACE Team,

Could you please read my entry and question dated Jan. 26 2013 at 5:04 PST posted under Dr. West's article entitled "The Troubling Symptom of Bronchorrhea in BAC", and advise me where I should re-post in order to get possible responses? I am not asking about bronchoscopy, needle or EBUS biopsies, as they are all less invasive and do not worry me, but rather the more invasive surgical lung biopsy or V.A.T. biopsy. I would like to hear from either doctors, patients or anyone with knowledge or experience regarding how a person who must expel bronchorrhea fluids in the range of 8 ounces a day for minimum 4 to 5 hours per day as I must do, can handle such an invasive procedure? I doubt pain meds could help enough after being surgically cut open with the need to cough up fluids so much or feel like one is drowning; but I would greatly appreciate know if anyone has experience with this? (It is only being considered as a last resort. So a far less invasive bronchoscopy was inconclusive and they do not see on CT scans a visible area to target)

Thank you,
ejb58

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Reply # - March 1, 2013, 12:14 PM

catdander
Posts:

ejb58, this is the place to ask questions. Welcome. I'm sorry your comment was not seen before by a doctor. Those older posts can get overlooked. However as is quite usual certain spring was able to direct you in the right direction. I tried to copy your question but was not able to so here is a link to it. http://cancergrace.org/lung/2008/10/10/bronchorrhea/

Before I contact a doctor for comment would you explain a little more about what you mean by not being able to see on CT scans a visible area to target? From that comment I'm not sure what a surgeon would target.

Thanks,
Janine
forum moderator

Reply # - March 1, 2013, 01:56 PM

ejb58
Posts: 10

Janine,
Thank you for the reply. (Note I think the info posted on your reply above starting with "husband "was an inadvertent mistake, as it does not relate to my case).
My situation is: the doctors can see on the CTs over 4 years my interstitial lung disease clearly.However bad bronchorrhea started Feb 2012 and has continued every day. They study the scans and can't see cancer but that may not be conclusive. Meanwhile we have exhausted every possibly non- cancer drug mentioned for bronchorrhea use such as steroids, anti-cholinergenics and inhaled lidocaine,etc... We tried to get inhaled indomethacin but it seems it is used in Japan but not the US, so my doctor could not get it nor have a lab powder it to try. Nothing helps; my fine top doctors cannot state the bronchorrhea cause definitively. (We have also ruled out oral sources for the fluids such as reflux and LPR .)

So at present there can only be a "presumption of possible" BAC based upon my clear, watery, frothy bronchorrhea every day;at present is is a full 8 ounces a day, documented by bag collections,photos, and my daily logs. We want to avoid a surgical procedure. But if all else fails it may be the only way for a diagnosis of the cause of my bronchorrhea and any potential treatment... if determined that possible benefits of a surgical procedure exceed the risks. Because bronchorrhea like mine is so RARE, (and it is horrible and rules my days), no one can give me much of an answer about the actual experience of going through a surgical biopsy when one must expel fluids for 4-5 hours every day. (Even one cough can be difficult after surgery, let alone 4-5 hours a day .) Therefore I hoped this G.R.A.C.E site could connect me to persons who might have experience, so I could be better informed about a surgical biopsy, with bronchorrhea. I know of no other place to go to contact others with bronchorrhea experience other than at G.R.A.C.E. That is why I so need your help! Thanks again,
ejb58

Reply # - March 1, 2013, 05:07 PM

Dr West
Posts: 4735

ejb58,

I'm afraid that my answer may not provide much comfort or insight. Bronchorrhea is a maddeningly difficult symptom for everyone because we just don't have very good treatments, though it seems that you've gotten everything that has made sense for the symptom itself (I've also not been able to pursue inhaled indomethicin). The main intervention that is effective is treatment of the underlying cancer (it's almost always in the setting of BAC), and sometimes that's been chemo, or a targeted therapy like Tarceva (erlotinib) or Iressa (gefitinib)...and occasionally we've resorted to surgery to remove one part of the lung if the disease all seems to be centered there. That's a rare setting in which we actually consider a "palliative lobectomy".

What puzzles me is where the conclusion of interstitial lung disease comes from, and why is that not possibly (or likely BAC)? If there was a biopsy that shows ILD and not BAC, I'll stand corrected, but if someone has diffuse patchy infiltrates and bronchorrhea, that's pretty classic for BAC, not ILD, and a biopsy, often done via bronchoscopy (but preferably a good core biopsy to get enough tissue to send for molecular testing) should demonstrate that.

Good luck.

-Dr. West

Reply # - March 1, 2013, 09:00 PM

ejb58
Posts: 10

Thank you for the reply, Dr. West. I have learned so much from your incredible GRACE site about bronchorrhea and BAC that I could not learn elsewhere. My first bronchoscopy biopsy was done in 2009 and that confirmed interstitial lung disease (from hypersensitivity pneumonitis developed after I lived with 4 pet birds in my small condo for 30 years.) Then, bronchorrhea started suddenly Feb 2012 ( during a very bad cold but they cultured and lavaged and ruled out bacterial, virus or fungus issues).
My second bronchoscopy biopsy was done June 2012 of the only suspicious area that my very fine top pulmonologist could see; he suspected BAC, and was surprised when it turned out to be non-malignant and just one of my fibroids due to the fibrotic changes from the ILD.
Two top pulmonologists and a multi-disciplinay panel reviewed all scans and concluded they did not see cancer in the scans, just progressive ILD. At present all doctors are perplexed and do not know how to help me. I will relay your thoughts and ask them to verify again if they are sure the ILD is not BAC --and discuss if perhaps we should just just try another bronchial biopsy.

But again I would like to pose the procedural question: Do you or does anyone know someone with bronchorrhea and has undergone a SURGICAL biopsy? (My question does not concernbronchial or needle or EBUS, no problem with them as they are less invasive). I would love insights as that may need to be considered if a bronchial biopsy is inconclusive again.I have found no answers on this question because bronchorrhea is so rare.

Thank you in any case for this world class site you created Dr. West!

ejb58

FYI I determined a good way to collect and measure a daily amount of bronchorrhea by coughing into a Ziploc quartz bag and after 24 hours pour into a measuring cup and labeling properly and sending photos to the doctor.If you would ever like to see a photo let me know .I understand my situation is rare; it is shocking.

Reply # - March 2, 2013, 07:18 AM

Dr West
Posts: 4735

I've heard of cases in which people produce volumes up to 500-750 cc of fluid every day, just draining for a big chunk of time in the morning.

I haven't personally heard of a surgical biopsy being done to make the diagnosis specifically for bronchorrhea, but it's not that rare to recommend a video-assisted thoracoscopic surgery (VATS) to get a good piece of lung tissue and direct look at what's happening when the diagnosis of some lung process has been very evasive.

I'm sorry you're forced to deal with this. Thanks for your very kind comments -- it's very gratifying to know that GRACE is helping people so much, as I had hoped to do when I started what became GRACE about 6 years ago.

-Dr. West

Reply # - March 2, 2013, 07:57 AM

craig
Posts: 330

ejb58,

It sounds like you are asking specifically about the risks of getting a surgically-obtained biopsy when one's lung capacity is already impaired by the production of copious amounts of fluid, which you assume would continue during the surgical procedure & maybe complicate it or make it dangerous. Is that correct?

I.e., you are wondering if drowning is possible during the surgical procedure and post-op recovery due to not being awake to cough it out, is that the question?

Best hopes,

Craig

Reply # - March 2, 2013, 09:39 AM

ejb58
Posts: 10

Thanks Dr. West,

If I understand correctl , you do not know of specific example of a person with large bronchorrhea production -requiring 4 - 5 hours a day of physical coughing to expel the daily fluids undergoing a surgical biopsy or VATs. I am told generically by my doctors that they suction during the procedure and give pain meds after (but admit they have not had to do it on a person with my quantities of bronchorrhea so they can't say more. ) And, I understand why they do not know, because I learned how rare bronchorrhea is from your GRACE site.

So, I will just leave this question sitting out there.., in the hope anyone else in the country has had this RARE experience or knows of someone with such experience, and can share it!.

ejb58

Craig, thank you, too,for responding,
Yes, my focus is: After a surgical or VATs procedure , how I could heavily cough for 4-5 hours a day as needed to expel enough daily fluids as I must, when in fact it hurts to cough just once in once
a while after a surgical chest procedure; while I must do it 4-5 hours per day to get the 8 ounces of clear watery frothy sputum out.

ejb58

Reply # - March 2, 2013, 12:40 PM

cards7up
Posts: 635

I think I'd ask this question of the surgeon or pulmonary doctor. I understand that you're saying your afraid of having to cough so much after having had surgery, knowing how painful it can be. Would keeping a drain in after surgery help with your condition? Wishing you the best. Take care, Judy

Reply # - March 3, 2013, 08:32 PM

double trouble
Posts: 573

ejb58, HI. I suffered with 4 hour coughing spells, bringing up very thick sputum with blood for months. I finally went to a pulmonologist who put me on a long term macrolide and an inhaled steroid, which seems to have helped tremendously. I don't know if you have tried that approach. I have multifocal adeno with BAC features.
I have an ugly hilar node that likes to hog all of the attention, but then there are mysterious nodules that like to wax and wane and have a fairly low suv. They show up, grow, disappear, then re-appear somewhere else.My point is though, that I was bringing up a large volume of fluid too, and that seems to have improved greatly after a few months on a macrolide. Just thought I would bring it up as an option for you. Feeling like you're drowning is awful, and i hope someone works it out for you soon. keep us posted.
Debra

Reply # - September 14, 2013, 05:24 AM

ejb58
Posts: 10

A quick update for the record, in the event it helps any others in the future: possible/but probable chyloptysis (very rare- lymphatic fluids incorrectly going into my lungs) rather than bronchorrhea from BAC cancer may be the cause of my continuing ( now Day 571) condition of my lungs filling up with fluids ( clear/milky, frothy) every day, all day long, that I must continually routinely expel to stay alive. Testing is now underway. Thank you all. ejb58

Reply # - September 14, 2013, 09:43 AM

Dr West
Posts: 4735

Wow! I'm sorry to hear that, but I thank you for letting us know. I know of patients who have developed chylothorax, essentially a pleural effusion from chylous fluid, but I'd never heard of chyloptysis before you mentioned it. Good luck.

-Dr. West

Reply # - September 14, 2013, 10:42 AM

ejb58
Posts: 10

Thank you so much Dr. West, and as more is learned , due to the rarity of chyloptysis,(even though this is not cancer), as an FYI, if they confirm and then determine that surgery, such as a thoracic duct ligation, might help stop the fluids, I will keep you all posted... ! ejb58

Reply # - October 5, 2015, 07:36 AM

ejb58
Posts: 10

Oct 2015 update: today is day 1321 of daily bronchorrhea. In the past year it increased from 8.5 oz per day to 12.2 ounces per day. I expel into ziploc freezer bags and weigh on a digital scale every day to log and monitor.

Per my last entry 2 years ago, It is not Chyloptysis, after both lower lymphangiograms and a thoracic duct ligation in Nov. 2013 to check for chylous lymph and an upper lymphangiogram in Nov 2014 to check for non-chylous lymph. (Labs here had been unable to test the sputum to determine if it was lymph as it had viscous mucus mixed in that made most testing difficult or impossible)

Recently in 2015 we got high tech sputum rheology testing underway - still in progress- but it confirmed it was not lymph, but had suggestions of possible mucoepidermoid carcinoma of the lung. ( Tumors create a substance similar but not identical to saliva) . More testing being scheduled.

Anyone have info or experience relating bronchorrhea and mucoepidermoid carcinoma of the lung?
Thank you all-
Ejb58

Reply # - October 5, 2015, 10:55 AM

catdander
Posts:

Hi Ejb58,

I'm so sorry for your long on going terribly difficult symptoms, without understanding of why nor relief. I had what double trouble describe (without the blood and without cancer) for about 3 years and was just given a sample of a new drug that has helped dramatically. My problem is so small compared to yours but it has dictated so much of my life in that time the relief is immense.

We have so very little on the subject of mucoepidermoid carcinoma, 3 threads that can be found here, http://cancergrace.org/search-results?q=Mucoepidermoid%20carcinoma%20MEC

I'm so sorry but the take home is there's just too little known about it to specifically direct treatment. Note Dr. Goodgame's post on having a specialist "lung" specific pathologist to test the biopsy. I hope you get a diagnosis and some relief.

I hope to hear something hopeful soon.

Janine

Reply # - October 5, 2015, 10:34 PM

ejb58
Posts: 10

Thanks Janine for your kInd support.
All meds listed in these Grace sites have been tried through the years and are of no effect. If mucoepidermoid carcinoma (MEC) is the diagnosis I think removal of tumors is the only possible hope.

The significance is:
Since most articles about bronchorrhea relate to adeno ca in situ formerly BAC , if my bronchorrhea is determined to be caused instead by MEC , causing a saliva like fluid, then Dr. West and other lung cancer doctors may find this of interest. (My doctors here plan to publish an article if MEC is the cause).

So,many thanks again Janine, and I will keep you posted when we learn more about my bronchorrhea cause.
Ejb58

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