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Information on pleural effeusion


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#1 Guest_billronm_*

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Posted 23 March 2013 - 04:22 PM

Hi Everybody,

  Sorry I've been out of touch so long. Ron still is having problems guess it's time to see a specialist.

Well I'm in the hospital, On Wednesday I really had trouble breathing so I had an ambulance ride, Wednesday night they drained 1 liter of fluid out of my left lung. I've been having some shortness of breath, but I blamed it on all kinds of dumb things. I thought a pe involved pain, I had none. So the doctors are pretty sure it was from the Sprycel. Hopefully I can go home Monday, I'm going nuts. So now I'm off Sprycel and I have to go on a different tki. Crap!!!

Can anybody tell me just what a pe is and how long does it last, nobody has actually explained this to me.     Billie



#2 Susan61

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Posted 23 March 2013 - 05:57 PM

Hi Billie:  It seems like all of us have been dealing with something.  I see a lot of our regular people have not been on much.  I jump on when I can, or if I think I can answer something. I am having numerous health issues myself, and just going through each day as it comes.

       A PE is a blood clot in the lung.  I know we have had people on here who have dealt with a bad PE from their Sprycel.  I guess they have to explain how it happens with your TKI.

      Most cases a PE is caused by a DVT where a blood clot from your leg travels up to the lung.  Thats why when I was in the hospital 2 years ago with the huge blood clot in my leg they kept me to thin the blood quickly.  Then I was sent home with Coumadin that I had to take for 6 months.  Then when they repeated the ultrasound and saw that my clot had dissolved I was able to come off the Coumadin.  I am sure you will hear from Pat, because I know she suffered horribly with a PE from her Sprycel.

     Sorry Ron is still having problems.  Please let him see a Specialist soon so it can be addressed properly.

     Will keep you both in my prayers.



#3 Guest_billronm_*

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Posted 23 March 2013 - 06:56 PM

Hi Susan,

  I knew you would be the first to respond. In the er a bloodclot was the first thing they suspected, they kept running tests constantly it was so hectic, but they finally confirmed it was fluid and not a bc Thank God.

Later in the day they drained my lung, and I'm getting shots of heparin, I'm taking a water pill and mucinex also. I'm moving around pretty good now they want me to walk around so I'm prowling the halls. I'm walking more often without getting real winded. I'm feeling good I just hope I get my strength back quickly when I go home.

  I'm so sorry you are dealing with so many health problems, and all the stress you're under probably agrivates everything so much more. I sure wish I could help you. Praying for you all the time.     Billie



#4 Susan61

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Posted 23 March 2013 - 07:15 PM

Hi Billie: 

     Keep moving around like they said.  Hospitals can be a real pain, but glad your there so they can monitor what is going on.  I still have not gone for my Endoscopy, and now my Arthritic knee is really bad.  I could not walk for about 4 days.  My  leg just buckles right under me. I know Knee Replacement is in the future plans, but like you said stress just aggravates the situation even more.  Lets just keep praying.  Be Good so you can get back home soon.



#5 Trey

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Posted 23 March 2013 - 09:23 PM

Pleural effusion is not a clot in the lung.  It is fluid (mostly just water) that builds up in the cavity around the lung (not inside it).  The water presses on the lung and makes breathing difficult.  Usually it must be drained when it reaches a liter or more.  Sprycel causes this by interfering with normal fluid disposal processes.  It usually requires a short break from Sprycel and re-starting after a couple weeks, possibly at a lower dosage for a while. 



#6 Susan61

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Posted 23 March 2013 - 10:42 PM

Hi Trey:  I am so sorry I wrote the wrong thing.  My mind is on so many things lately, and I had Pulmonary Embolism on my mind not pleural effusion.  I am sure Billie will understand. I just hope she starts to bounce back soon.

Susan



#7 hannibellemo

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Posted 24 March 2013 - 09:53 AM

Hi, Billie!

I replied last night and just as I hit send LLS went down - I hate it when that happens! It's so good to hear from you again on this board.

Susan was not wrong in saying that a PE is a pulmonary embolism, that is the correct abbreviation in medical terms. However, we with CML use PE to designate pleural effusion because that is what can normally affect us due to our TKIs. BTW, any of our TKIs can cause PE, but Sprycel seems to be the one we most hear about.

So in keeping with our tradition PE on this site = pleural effusion. Like you I had PE that mostly affected my right lung and, like you, I had a thoracentesis that removed over a liter of fluid. The fluid is not IN the lung but surrounding the lung in the sack, the pleura, that encases our lungs. That exerts pressure on the lung that keeps it from expanding fully. A true pulmonary embosim is much more dangerous in the short term, but our pleural effusions can also be life threatening depending on how severe they are.

I have been at 50mg. Sprycel for the past 11 months and so far, so good. I lost MMR and nearly lost CCyR during my 9-10 weeks off TKIs but my most recent PCR shows me back down to .2% (.1% = MMR on international scale). As I tend to be a tortoise when it comes to response anyway everyone seems satisfied with my response on the lower dosage. So, I would definitely ask your onc (if I were you) to try a lower dose and see how it goes for you.

I'm curious because it seems to me you were about at the 2 1/2 year mark on Sprycel, too before you had your PE. Is that true? Several of us developed PE at around that mark as I recall.

I was never hospitalized, thank goodness, and I hope you are home soon. Good luck to you and Ron. You said he was having some problems and it was time to see a specialist, I'm sorry to hear that.

Pat/Cleo/hannibellemo


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#8 Susan61

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Posted 24 March 2013 - 05:56 PM

Hi Pat:  Thanks for that information.  You are right about it being used in the medical field, but I did have Pulmonary Embolism on my mind for some reason.  Like I said my mind is all over the place.  Glad your doing good.  I thought of you right away when Billie talked about the fluid build up.  Thats why I mentioned you to her.  I knew you would respond.

CML is hard enough to deal with, but when you have all these other things going on because of the TKI, or other health issues its really tough.

    Thats why its so good that we have this board to vent and share and get advice.  It helps us to get through it all.

Take Care

Susan



#9 Guest_billronm_*

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Posted 24 March 2013 - 10:25 PM

Hi Pat,Susan&Trey,

Thanks for getting back to me. Pat I'm just at the 2 1/2 year mark right now. I have been on 50mg since last June (100 before that) my onc reduced me to 50 because of my problem with anemia and low iron. I'm still pcr at that dose. He told me to make an appt to see him in 2 weeks and he's going to put me on something else. I'm so upset about going on a new tki, going through the first side effects and living with the ones that don't go away. I've been off the Sprycel since last Wednesday and I'm starting to feel so much better eventhough I'm recovering from the pe. How long was it before you got your strength back, and how long were you short of breath? I just don't have time for this right now. I have to help Ron get straigtened out. It's been 9 months since this all started and his polycythemia is under control he didn't even need a phlebotomy this month. Last month his platelet no went down to 50 for the first time. But his depression and anxiety aren't getting better, and he shakes so bad sometimes it breaks my heart.  I called his pcp last week and told him he wasn't improving so we were supposed to go see him last week, he mentioned seeing a neurologist I wanted that months ago but all the docs said it's depression and he'll be fine! @#%&*#  if I hadn't been feeling so crappy for so long I would have pushed for this sooner. So hopefully well hopefully we're headed in the right direction now. Sorry about going on and on.

I'm going to sleep now just got my heperin shot hopefully the last one! I saw all my docs and I'm out of here tomorrow morning. Geez today was the first day I got a cute male nurse, all the other nurses were like nurse Rattchitte from one flew over the cuckoos nest. He's working here the next 3 days too. Biggest problem I haven't shaved my legs for over 2 months (for warmth) and I don't think there is anybody in that hospital that didn't see my hairy legs because they constantly were checking for swelling! UGG!!!      Lot's O Luv Billie



#10 Marnie

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Posted 25 March 2013 - 09:07 AM

Hey, Billie. . .just popping in to say "Hi."  Hope you are packing up and heading home from the hospital today.  I am on spring break, so maybe things are looking up . . .at least for the next week.  Take care, and take care of Ron.  Actually, make sure that you both take care of one another.  It needs to go both ways.

Marnie



#11 Headi

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Posted 25 March 2013 - 03:16 PM

Hi Billie, I've been out of the loop for a long time too. I had bi-lateral pleural effusions from Sprycel. My drs didn't want to do anything except diuretics and steroid as treatment for them so it took 6 weeks off tki's before they cleared up.  I went on Tasigna at the end of last May, but opted to take only half dose.  That didn't work as pcr number went up, so I started on full dose at the end of September.  The major problem with Tasigna is the way you have to take it. Twice a day at 12 hr. interval, with no food on stomach for 2 hrs. before and 1 hr. after taking it. I guess if I was in jail with eating times written in cement, I could work it out, but in real life with husband, kids and grandkids coming and going its difficult.  However my pcr is the best its ever been and the only other problem I have with it is the scalp itching and burning.  You may also have a little trouble with leg cramps, but I find if I keep up with my potassium & magnesium, thats not a problem. Tasigna seems to be the drug of choice after Sprycel, so its probably what you'll be on. I understand another new one has been approved though. I was happy to hear hannibellemo was doing well on 50 of Sprycel, as that is what I was hoping to do. I may ask my onc to let me try it at that dose.  Sprycel worked for me and I was happiest on that until the pleural effusions.  Maybe they will let you try that.  Hoping the best for you and your husband also with his health issues. 

Headi



#12 Guest_billronm_*

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Posted 25 March 2013 - 08:59 PM

Thanks Headi,

I suppose Tasigna is what he'll recommend. I don't think I could follow that schedule, but if I have to I'll give it a try. I sure would like to know more about the newer drugs and their side-effects I don't think too many people on the board are on them yet. I'm going to try not to think about it to much(right) and enjoy my break.

  I'M HOME!!! I feel great, I almost feel like a different person.I think that pe might have been brewing for a while. I'm sure this break from Sprycel is helping too. I sure wish the weather would clear up, I'd love to go outside and take a walk, it's time to say good-bye to winter.   Take Care   Billie

It sure will be nice to sleep in my own bed tonight!!! My hospital bed was haunted



#13 mariebow

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Posted 25 March 2013 - 10:05 PM

OH Billie I know what you mean. I am glad you are home.



#14 Badger

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Posted 26 March 2013 - 09:24 AM

I knew when I started Sprycel that PE was a side effect, but was still caught off guard when I got it. It started with a cough, and finally got to the point where it was very difficult to breathe. The thing is, it was harder to breathe when lying down, and got better when I was up, so it took me a long time to do anything about it. I finally started taking diuretics, which I thought helped quite a bit. Howvever, after changing drugs and the PE totally resolved itself, it was unbelievable how much better I felt. It took about six months before I felt totally good again though.



#15 hannibellemo

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Posted 27 March 2013 - 06:42 AM

Hi, Billie,

I'm so sorry you are going through all this crap!

I'm curious, why are you on heparin and why are you in the hospital? My antennae are wiggling, that is not a usual treatment for pleural effusion. Just tell me to buzz off If I'm being too nosy!

To answer your questions, I did have the inflammation of the lining (pleurisy) along with the fluid. I was in quite a lot of pain and was very short of breath from the very beginning, even when the pleural effusion was tiny. Steroids helped the most, lasix really didn't do anything because I don't tend to retain fluid. It took me the whole 9 weeks to really feel better. Psychologically, I felt a lot better when I could no longer feel the fluid shift around when I changed positions! I hated that! I'd sit up from a reclining position and I could feel the fluid sheet down the pleural to the new lowest level, gross!

Of course, there is no guarantee that I won't have another at 50mg. somewhere down the road, Tracey (sp?) couldn't stay on Sprycel regardless of the level. There are no guarantees about anything anyway so I'm just happy it's working now!

I hope they get to the bottom of Ron's issues! And, that you get back home!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#16 Tedsey

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Posted 27 March 2013 - 12:17 PM

Dear Billie,

I am so sorry you are in the hospital.  Hope you are home by the time you see this.  And I hope you are feeling much better.  It also struck me funny that the docs ordered heparin.  Sorry, I am nosy too.  As "normal" people get older it is not uncommon to be on a blood thinner (not that you are old, I am just saying--I think I remember your age range and you are NOT old).  I wonder how doctors figure out if an increase in PLT is due to the CML or just plain ol' increased PLT with age.  Anyway, hope the lower dose makes everything better.  I keep on thinking it is such a shame that such a good drug has such issues.  But, I guess it could be worse (not to minimize,  I know you have been through hell).  I have also been on Sprycel 2.5 years.  I have been wheezing for about a year, but no one can find anything.  At this point, it is late onset asthma.  However, it is fine when I run.  Go figure.  I have mild anemia too (HGB 10.9), so where my O2 is being robbed is all the same to me.  I know that PE can happen without any other swelling of the body.  So much for symptoms until the wave breaks the dam.  Take care and quick healing to you and Ron!

Tedsey 

Pat,

Glad you are doing better.  Hope you get back to MMR soon.  Keep us posted!  I still feel sad you had to go through all that torture.  May this lower dose of S work wonders for you!  I would love to take a lower dose!  Maybe the mouth sores would disappear!  Sadly, I found a partner in mouth pain who is also on S.  Anyway, it is a mystery why some of us are bothered by Sprycel with PE and some of us are not (not meaning me, with my wheezing, I kinda feel I am headed that direction).  Wouldn't that be an area to study (why some of us have certain and serious side-effects opposed to others who don't)!   Just glad to hear the sea is calm now for you.  All the best!



#17 hannibellemo

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Posted 27 March 2013 - 04:23 PM

Teds,

OMG, your HGB is almost 11 that is fantastic! Seriously, that's wonderful - you know how freaked out I was when you got down to 5.

I had mouth sores at the very beginning and I had a run of them last January for some strange reason. Not fun and I am really glad they didn't stick around! Aren't you PCRU? Have you talked to your onc about reducing your dose, trying to cut back slowly or go right to 50? I almost think those mouth sores would be a deal breaker for me they were so painful and I only had them for a relatively short period. Might be worth a try. Plus, the 50mg. cost half as much as the 100s! That was nice incentive right there.

Thanks for thinking of me - glad to hear from you!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#18 Tedsey

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Posted 27 March 2013 - 09:01 PM

PCRU?  In my dreams!  However, I am still MMR.  Phew!  Glad your mouth sores didn't stay.  I have one right now in the soft part where my tongue attaches in my mouth.  It is bothersome, but one of the best places to have a sore.  I now  rate the sores by placement.  This one is a 3 for me, (but would probably be a 10 for most folk).  My last PCR went up a little (but not significantly).  I think it was .019.  If I had an extra zero, I would feel more confident about asking for a dose reduction.  However, for the first time, I am feeling pretty beat up (aches and pains, a little more tired...).  Not sure if it is the Sprycel or just getting older.  It could be either one.  It would be great to pay less for Sprycel.  We have a high deductible insurance and it depresses me every time I see the bill.  But, better than no insurance.  I am happy my husband doesn't think twice about the expense of having me as his wife (I also have a soft spot for Italian shoes and handbags...if that were the only thing we had to worry about).  I feel guilty though.  Right now I am not working.  Oh well...  If I live long enough to comfortably see the kids in school full time (I have one in Kindergarten and one still at home), I will consider going back to work. 

Always thinking of you and my IBFs!  I have been lurking lately more than talking.

Take care Pat!

Teds



#19 Guest_billronm_*

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Posted 27 March 2013 - 11:27 PM

Hi Tedsey,Badger,Marie,Pat,

  I got home Sunday, I feel great, I went to see my pcp yesterday for my follow up my lungs are nice and clear ! Yeah My last chest x-ray was Saturday and it was good so they let me out Sunday instead of Monday like they said earlier. I guess they were giving me heparin shots to prevent a blood clot, the first couple days I wasn't allowed out of bed except to use the br. Maybe because my left carotid artery is completely blocked they gave me the heparin, I really don't know why they did what they did and why they kept me in the hospital for so long all I know is I feel great now. I'm sure the Sprycel break is making me feel better too.

I was doing really good on Sprycel as far as side-effects go, but the low iron and anemia now the pe I doubt my doc will even consider it again for me.

  Tedsey, A PE isn't real common so just because some of us got one don't be afraid you'll get one. I read that Sprycel can cause congestion and I've had that since I went on it 2 1/2 years ago so I stayed on the lasix that I was taking from when I was on Gleevac. I had mouth sores off and on but not as bad as you get. The bmx solution helped me a lot. I've always been a fanatic about brushing my teeth I dip my toothbrush in baking soda,then I put toothpaste on my brush I start brushing then I dip my toothbrush in a capful of peroxide and brush until I'm foaming at the mouth looking like I have rabies then whatever is left of the peroxide I rinse with it, then I take my dental floss and dip it in the baking soda and I floss then I rinse and use mouthwash, then I take a nap and wash my face and put lots of wrinkle cream on. Do you think I have a little bit of OCD? Maybe the peroxide helps with the mouth sores.

  Pat, I'm sure glad you're finally feeling better, I know that you had a lot of pain, I didn't have any that's why I didn't think about a pe, but when I would bend over I felt this like twinge or even a thump in my chest on the left side just like you described but I thought it was my heart, you know how it's hard to describe. Now we know.

I just brushed my teeth so I'm going to bed so I can get up and start all over again.

Thank you all for being here for me, even though I haven't been around much lately.  Love Billie



#20 Guest_billronm_*

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Posted 27 March 2013 - 11:40 PM

Hi Badger,

  I'm so glad you're feeling so much better, what tki are you on now? I'm dreading going on another one, I had 3 lousy years on Gleevac and 2 1/2 good years on Sprycel, or so I thought.  Crap.  I keep saying we are the pioneers of tki drugs, but sometimes I feel like I'm heading for the Donner Pass.     Take Care Billie






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