mucinous BAC - 1268732

rjiliffe
Posts:25

I have mucinous BAC in my lower lobe, and was wondering if it was possible( or indeed wise) to attempt to espress the mucos. At the moment i can feel it moving around, particularly when lying down, but my cough does not express it. Any advice would be most gratefully received,

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Reply # - March 5, 2015, 12:48 PM

catdander
Posts:

Hi Rjiliffe,

I'm so sorry you're having this problem. The official term is bronchorrhea, it's a real problem but doesn't have any good solutions. Some use inhalers and other meds for mucus problems. Some, certain spring comes to mind learned physiotherapy moves that were helpful. At least one person tried or discussed methods used for those with CF. People use lots of little tricks to help keep this less worse but unfortunately nothing new has come into play.

The first 2 links below are 2 of what I think are the best on the subject, the 3rd is the search result from Grace's search engine on bronchorrhea.

I hope they're a helpful,
Janine

http://cancergrace.org/lung/2008/10/10/bronchorrhea/
http://cancergrace.org/topic/any-updates-on-treatment-of-bronchorrhea?v…
http://cancergrace.org/search-results?q=bronchorrhea

Reply # - March 9, 2015, 11:47 AM

rjiliffe
Posts: 25

Many thanks for information, Janine - it has shed light on the condition & given me plenty to look into,

Kind regards

Reply # - March 18, 2015, 12:55 PM

kapleasants
Posts: 6

Hi - I've had mBAC for 6 years and am doing pretty well so hang in thereI I've recently have the effusive discharge again at night, though I know yours won't come up. It became very painful as fire - my doctor said it was pooling and causing irritation. She prescribed 10 mg oxycodone so I could get some sleep. At the same time I decided to stop eating a handful of ginger chips I loved every day, and the a hugh quantity of ice I was always craving.

I would not have believed the following if if didn't happen to me;

After a day of no ginger and a much a much smaller amount of ice and 10 mg of oxy, I slept like a baby for the first time in ages, and didn't have one bit of discharge that night or since (5 days now) I know your problem is different but perhaps 1 or two of these things may help may eliminate your problem. I truly hope so because I know haw miserable it can be. Good luck! Or...maybe more fluids or ice will make it come out easier.

Reply # - March 22, 2015, 05:12 AM

rjiliffe
Posts: 25

Thanks for your reply - its is encouraging to know that you are 6 years down the line with mBAC. I'll also give your suggestions a try

Reply # - November 3, 2015, 11:56 PM

rjiliffe
Posts: 25

I'm now approaching my third year of mBAC and am just finishing 2nd round of Palbociclib, which has had very little effect. I'm now looking at privately funding BMS Nivolumab treatment, as I appear to have run out of any other options. My biggest problem is breathing - although I have an oxygen concentrator, I find mobility extremely difficult due to extreme shortness of breath. Fatigue is also a big problem. I am wondering if this is a normal side effect of mBAC, or whether the treatment is the cause, and whether you can suggest anything which might help,

Reply # - November 4, 2015, 07:55 AM

JimC
Posts: 2753

Hi rjiliffe,

Did the extreme shortness of breath precede treatment with Palbociclib, or get worse after you started it? If it's become more problematic, it may be a reaction to the new drug and should be discussed with your doctor. Fatigue can be caused by any anti-cancer treatment, so if it's increased after starting the new therapy, that seems to be its likely cause. It would also be helpful to get a new scan to compare it with previous scans, as an increase in symptoms could also be the result of progression, which would certainly point to a change in treatment.

JimC
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Reply # - November 12, 2015, 10:59 AM

rjiliffe
Posts: 25

Many thanks for your reply, Jimc. We saw the consultant today & the disease has progressed. He thinks its progression, with the Palbociclib treatment not helping that is the cause,so we have discontinued it.
We have now decided to self fund Nivolumab treatment, and are considering adding low dose Ipilimumab & low dose Cyclophosphamide. I wondered if you knew of a precedent with this combination in advanced mBAC ?

Reply # - November 13, 2015, 12:59 PM

Dr West
Posts: 4735

There is no precedent for this in advanced mBAC. We have essentially no data on even single agent immunotherapy in BAC of any subtype. A combination like that would be well outside of the range that would be considered a standard treatment approach, so there's no way to offer an idea of what to expect. That isn't to say it couldn't work, but just that it's really a complete unknown.

Good luck.

Reply # - November 13, 2015, 12:59 PM

Dr West
Posts: 4735

There is no precedent for this in advanced mBAC. We have essentially no data on even single agent immunotherapy in BAC of any subtype. A combination like that would be well outside of the range that would be considered a standard treatment approach, so there's no way to offer an idea of what to expect. That isn't to say it couldn't work, but just that it's really a complete unknown.

Good luck.

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