Help! Has anyone here had hemoptysis (coughing up blood)?

[Sabacat]

The latest twist in my journey is something I didn't expect (but, oh, yes, it DID start on a weekend/holiday as have all the others).   Last night, I coughed up a tiny bit of phlegm that was sort of hard and deep red.  Since that was on the list of things to call your team immediately about, I did so.  Unfortunately, I never heard back from my oncologist (and he has been perfect about responding to pages at all hours up till now) last night, but I sent him a MyChart message with a photo.  He replied this morning that he hadn't been able to get through via phone but that I should let them know if I had any pain, shortness of breath, or multiple episodes of the same today.  Well, I had one more at 11am, felt fine, no pain, no SoB, did my 2-mile walk at near normal speed (and always try to fully expand my lungs while doing it.  And then, after an hour or so (and eating some peanut butter on rice cakes), I had a second for the day.   Again, they were REALLY tiny - in fact, I put a penny in the photo so he could see just how small.  BUT when I called this afternoon, the NP called me back and really scared me.  She had me stop my aspirin (which is for stroke prevention) and said to go to ER in nearest major city (Jacksonville, right now) if either volume or frequency got worse.  I'm scheduled to go to where my doc is  (6.5 hours away) on Tuesday for scans Tuesday evening, labs/visit/treatment on Wednesday, but after reading what I found on Dr. Google, I'm going to be a nervous wreck all weekend/Monday.  Sounds like if it does increase, it is a VERY serious business.  Hope someone can tell me that they've experienced this and it did not go south in just three days! 

Susan 

[LexieCat]

Yeah, I'd find that scary, too. The stuff I read, though, seems to suggest that it's most often not very serious unless it gets to be a teaspoon or more--which sounds like a lot more than what you're seeing. 

It's always easier to tell someone else not to freak out than to convince oneself not to, though. 

Hang in there!

[Sabacat]

Thanks!  Currently, I’d estimate mine at less than 1/4 tsp per time, but the NP seemed to be suggesting that it could turn quickly and that they take it very seriously.  I’m trying to believe that 3 days is not a long time.  REALLY don’t want to spend any more time in an ER anytime soon!

[Rower Michelle]

Hi Susan,

I don’t want you to freak out- early in my diagnosis I had something very similar and the nurse practitioner sent me directly to the ER at a hospital with a high resolution CT machine (not the local community hospital).  She said they needed to rule out a pulmonary embolism.  It turned out to be plural effusion.  I would call the after hours service and speak to the oncologist on call- they often don’t have access to your chart but can help decide if you should wait.  My motto is never wait, act.  Early action and a false alarm is better than the alternative.  
 

Hang in there & keep us posted. 
Michelle

[Sabacat]

Thanks, Michelle.  They are concerned about PE except that I have no pain and no sob - able to walk fast and O2 is still 98.  They are more concerned that it will start to bleed more, which then becomes a serious emergency.  Not sure what it's like in KS now, but we have spent two weekends in packed ERs waiting to be seen.  With Covid increasing, it's likely to be even worse than it was in Sept/Oct.  Even at Duke, they had folks on stretchers lined up in the hallways.  When I had my stroke, my oncologist was able to get us admitted finally through a 'back door' but it is truly horrendous everywhere.  I won't go through that again unless I'm pretty sure I absolutely have to.  If so, we'll go to the big hospital in Jacksonville.  

So far, no more episodes in last 15 hours...🤞

[SamGirl50]

Sending you hugs and prayers! Stay strong!

[LouT]

Sabacat,

I have never experienced this but the advice on keeping track and seeking medical intervention (ER) sooner rather than later sounds right to me.

Lou

[Sabacat]

Thanks, Lou.  As it turns out, I did not have any additional episodes yesterday or (so far) today.  Coughing is also very limited.  However, now my ankles are swelling just like they did in the beginning, which is when I had a large pleural effusion.   Suspect that is the case now, as well.   That's discouraging, as we had to delay my 4th infusion for two weeks already due to immune-mediated colitis (side effect from Keytruda) and high dose prednisone (which interferes with immunotherapy), so I'm afraid we've lost ground.  Scans on Tuesday will tell the tale, but I'm not feeling good about it.   AND my oncologist is going to review my scans but I'll be seeing the NP because he's belatedly decided NOT to see patients on Wednesday as planned.  I'm supposed to have the next infusion on Wednesday; hoping there's no reason for further delay.  

[TJM]

Dang. You know that aside from the fact that Doctors are saving my life, I don't particularly like them.

Peace

Tom

[Sabacat]

I can’t really complain.  When I had him paged at 6:30am three weeks ago, he called me back in 5 minutes.  And when we drove over after my stroke and the fiasco at our local ER, he managed to get me admitted when they didn’t have any beds available —and had practically every specialty visit me. They left no stone unturned.  This was just so last minute and came at (as usual) the worst possible time.