32 replies to this topic

[chevy flame]

Oncologist changed my medication from Sprycel to Gleevec because of chronic pleural effusion.  Even though he reduced the Sprycel dosage down to 20mg every other day, I was still having bilateral thoracentesis every week.  The hospital was removing 2 liters from the left and 1 liter from the right side. 

 

I have been on 400mg of Gleevec for three weeks now and there is no reduction in the pleural effusion and I have a host of new side effects to deal with that I didn't have while on Sprycel.  The edema is severe and I am a bit concerned with the volume of fluid throughout my body.  Legs, feet, hands and face.  Taking a diuretic does not seem to help because the fluid builds by the next morning.

 

Has anyone switched from Sprycel to Gleevec and seen a change in the Pleural Effusion side effect ?

[r06ue1]

Why didn't your Oncologist put you on 200 mg Gleevec?  What is your last PCR numbers like?  Since you were on 20 mg Sprycel, I would think that 200 mg Gleevec would be enough.  

[chevyflame]

I've been undetectable since June 2015. BCR-ABL has consistently registered 0.000%. Will have BCR-ABL blood work and a scheduled appointment with my oncologist in three weeks.

 

Thanks for your response r06ue1, it's greatly appreciated.

[r06ue1]

Being undetectable that long you might even try stopping the medicine completely but I would try dosage reduction first, get to two years undetectable than try stopping.

[Trey]

It takes longer than 3 weeks to get past the initial side effects for the new TKI, and more than 3 weeks to recover from the side effects from the old one.  Time and patience will be required. 

[chriskuo]

Did you take a break between Sprycel and Gleevec?  

Were you clear of the pleural effusion before you started Gleevec?

 

If Gleevec doesn't work, I would ask the doctor to try bosutinib next.

But give Gleevec several months before giving up.

[hannibellemo]

Hi, chevyflame,

 

In your position, considering the severity of your effusions, I would want to be completely clear of pleural effusion before I started another TKI. Sprycel is most likely to cause them but all of the TKIs have that potential.

 

In addition, Gleevec is well known for it's edema side effects. You have had an incredible time of it, putting up with far more than I would have. Pleural effusions are dangerous in their own respect and, IMHO, you should never have been allowed to go on for this long, especially considering how severe yours were.

 

I would ask your onc to stop everything for awhile. I only had a pleural effusion the one time with a thoracentesis and I was off Sprycel for almost 3 months for it to clear before I started on a lower dose. In my experience, it is important for you be be totally clear before you jump back into another TKI and you may be better off with Tasigna given your early edema experiences with Gleevec. Bosutinib is a TKI most like Sprycel so I wouldn't go to that one before giving Gleevec and/or Tasigna a chance.

 

Good luck, chevyflame, and keep us posted.

[mlk210]

I was taken off Sprycel and put on Gleevec from 2 plural effusions last year. I got my first Plural Effusion on 100mg sprycel and was off medication for three weeks and put down to 70mg Sprycel. But within six weeks, I was back with another plural effusion. I think i should have waited longer before starting the lower dose. Then I was on a break for a little over a month and started Gleevec 400mg. I've been on that for 10 months or so and haven't had another Plural Effusion. I never had a thoracentesis. Just a drug break.

 

I think you need to wait for the plural effusion to completely clear before starting Gleevec or the reduced dose of Sprycel. For me, Gleevec has been a better experience, but I don't have the GI side effects many do.

 

All my best!

[kat73]

Are there any protocols or guidelines regarding how severe a pleural effusion needs to be in order to require a stoppage of TKI?  Are there grades of pleural effusion?  Are there any guidelines for how long to stop the TKI?  Any management protocol on how often to get a chest x-ray to see if the pleural effusion is gone?  Peoples' experiences seem to be all over the place.  I've had two that turned up by accident and nobody did anything.  I feel very bothered currently and worry that the one I had last year never really went away.  But, how would I know?  

[hannibellemo]

kat73,

 

Yes there are gradients of side effects, including pleural effusion generally referred to as grades 1,2,3,4 or 1/2 and 3/4. In every article I've read they say to hold Sprycel (that being the most causitive agent) until resolved regardless of the grade. My early effusion quickly became a grade 2 requiring thoracentisis because I was not told to stop Sprycel. 

 

If you google pleural effusion and Sprycel you will find several articles about management protocol. I have one in particular that I found helpful and I printed that out. I will check my file for the title and add the link here when I find it.

 

If you aren't experiencing side effects it is probably nothing for you to worry about. I still have a very slight pericardial effusion that can be seen on an echo but I'm totally asymptomatic from that.

 

Here is the link: https://www.ncbi.nlm...les/PMC2785832/

 

Please note that it was published in 2009 but that does not make it any less relevant. I particularly like this article because it answers the questions I had when I first developed the effusion; the same ones you posed above.

Edited by hannibellemo, 07 January 2017 - 08:41 AM.

[kat73]

Thanks, Pat, that was a helpful article and did indeed lay out the management protocol.  I'm surprised nobody followed it in my case(s)!  In my experience, the docs take a listen with the stethoscope and say they don't hear anything of interest.  I don't have the smartypants in me to say, well, you DO know it's not fluid IN the lung, it's OUTSIDE the lung, and it might not make any difference to breathing sounds.  They also love to look at my ankles and say triumphantly that they don't see any edema.  I spent two years on Gleevec with toad eyelids, but never had an ounce of edema anywhere else.  I see my GP on Monday and I'm going to press for a chest x-ray.

[hannibellemo]

kat73,

 

Glad you found that helpful. I remember the post from Marnie when she first had her pleural effusion and her doc said he didn't hear anything. I told her to have him listen for breath sounds especially low in the lungs. If he can't hear any that may be because there isn't any lung down there, it's been compressed due to the fluid in the sac! When my pleural effusion was at its worst breath sounds stopped about halfway down my back.

 

Now he is always careful to check for breath sounds all the down to the bottom of my lungs. 

[kat73]

Good point.  I'll remember that.  I was also struck by the concept of lying down for the x-ray.

 

(Great advice, btw, you gave Tima about having the discussion about children.)

[Marnie]

Indeed. . . I had about half a lung that time. The x-ray was pretty impressive.

Cutting dosage seems to have done the trick for keeping pleural effusions at bay.

[kat73]

Pat and Marnie - I just got back from the PC and feel very vindicated because I do indeed have a pleural effusion on the left, just where I "felt" it.  Showed up on the x-ray, and she could hear it because she listened way down low at the bottom of the lungs.  She said it was about half-way up and she'd call it moderate.  She called my onc and he agreed I should temporarily shelve the Sprycel and start Lasix.  The followups are all set, email and office, so I feel pretty good about things, ESPECIALLY because of people here like you - I truly can say I have learned 95% of what I know about the world of CML from this forum, Trey's blog, and the research papers.  Only 5% of any help or info has come from the doctors' visits.  Because of y'all I will hold out for a complete disappearance of the effusion before a Sprycel restart at the lower dose and not before.  I also know, because of you, that it may take longer than a few weeks, and to expect to have to go to prednisone to get it all.  (That was my experience with an ear infection last year - still had fluid and the prednisone worked.)  The PC did mention thoracentesis in a couple of weeks if the Lasix isn't working. 

 

It's funny to feel happy about this, but I think because so many symptoms get the brushoff, we learn to keep quiet and accept that we're being alarmist, especially when the symptoms are relatively bearable or elusive or mild.  But I really thought I had an effusion, and I did. I could feel something wasn't right.  I'm not a malingering fool and I'm not crazy.  So. . . good day . . . ha!

[Marnie]

Good job, Kat!  It really does feel good to know that you are right, and to have the doc acknowledge that you know what you're talking about!  Be sure to stay off the Sprycel until your pe is completely resolved.  My first time around, I didn't stay off meds long enough and it quickly filled with fluid a second time. 

 

Good luck!

Marnie

[hannibellemo]

It's nice to know (and for your onc to know) that YOU know your body and when something isn't quite right. I'm glad you're feeling vindicated but I'm sorry you have the effusion! I started out with lasix but I didn't really start getting better until I suggested a course of steroids ( I actually had 2 courses). I was one who had a rash several months before the pleural effusion and I do believe the effusion was an immune response. Since then I've learned that the rash issue could also be applied to having a rash while on Gleevec and not necessarily with Sprycel. I didn't have a rash with Gleevec, though, just liver toxicity.

 

So, I'm glad to know that if you aren't getting results from diuretics you're on board with a course of steriods, too. Keep us posted!

 

Forgot to add that I'm impressed you weren't having worse symptoms than you were with 1/2 your lung involved. Although I believe Marnie was kayaking, or motorcyling or climbing Mt. Everest with barely any lung capacity at all! The tip of my lung was just barely blunted and I was short of breath. When my onc saw the x-ray he said I shouldn't even be having symptoms!

[kat73]

Thanks, Marnie, I will definitely make sure it's gonegoneGONE first.

 

Pat - I know what you mean about the differences in "symptomatic-ness."  I think this is often at the root of why docs don't believe us.  Everyone in the equation means well, but it's sad to see how much psychic and emotional damage is done by dismissiveness.  We are truly listened to - really listened to - by so few people in life.  I kept saying I felt "tight" or "gloggy" or that my midriff was distended.  I kept saying I could barely eat half a portion of anything before I felt full.  I kept saying I had a high-up tickle that made me cough when I took a deep breath.  I kept saying I couldn't do a flight of stairs without being tired.  Onc always looked at my ankles, shrugged,  and told me to exercise more and go back to psychotherapy.  After awhile, I just got used to feeling punk and depressed and tired all the time.  My husband continued to charge up steps and look behind him, with surprise and annoyance, that I was way behind and hauling myself up by the bannister.  Absolutely NOBODY listened to me. 

 

I had rashes on Sprycel - I forgot to mention that to them.  I am supposed to email the onc 1 week in, so I will quote him the relevant bits.  I thought it was interesting (did I read it in your article or somewhere else?) that even if you do NO treatment, just stopping the Sprycel resolves the effusion eventually.  So, this is my first day off - I'm going to try and enjoy it. 

 

What would I do without you guys?

[kat73]

Have to add a PS.  Pat - I had two pleural effusions before this, and one was of the "blunted tip" variety, and so I can only assume that they were both considered too minor to even mention.  I found out about both of them by accident, and one absolutely was never mentioned to me by anybody - nurse, hospitalist, attending, onc, PC.  But the persistent and worsening tiredness and weakness, I did complain about - for months and months.  Nobody, not even I, made a connection to having a small (but getting bigger?) PE.  But your experience, and Marnie's (and others here) made me think and consider, and then gave me confidence and ammo to get some attention.

 

One other question:  29% of people presenting with a pleural effusion also show a pericardial effusion.  Is this seen by the chest x-ray?  Or do I need to ask for (demand???!?) an echo?

[Gail's]

In the spring I had pneumonitis which I understand is a side effect of Sprycel. Resolved on its own although the shortness of breath and fatigue still occur occasionally.
Last week I woke up with awful sore throat. Had a strep test, negative. Within a few days lost my voice and have coughing productive of disgusting mucus. These are all cold virus symptoms that I expect will improve. I'm sleeping tons and drinking gallons of water.
Because the topic of pleural effusion comes up a lot, I guess I'm worried this bug may make me susceptible to one, or that my current symptoms could be more serious than they should be.
Anyone experience pleural effusion this way or have it develop after a virus? Am I worrying needlessly?