8 replies to this topic

[kat73]

I am on Day Three of Lasix (furosemide) 20 mg for a pleural effusion (have been on Sprycel 5 yrs), dropping the Sprycel at the same time.  I don't feel any better in the lung department, but I sure do feel overall super lousy.  Drowsy and wonky, lightheaded, TIRED, weak, depressed and anxious, restless and agitated, no appetite and shivery cold.  I have been conscientious about keeping some fluids up and getting electrolytes.  Early this AM, one of my "speakers went out" - I lost all my tinnitus in my right ear for several hours.  It shot me out of bed like a bolt of lightning, as my ears have not been silent for 23 years.  Frantic pacing and hysterical worry ensued, lemme tellya.  I can't lose any more hearing!  I know that hearing loss is on fursomide's list of side effects, but I don't think 3 days at 20 mg should trigger it.  But maybe I'm super sensitive to it?

 

Anyway, bottom line, I have read in the literature that diuretics alone for pleural effusions do not have a long-lasting effect, but that glucocorticosteroid therapy is effective.  I really don't want to waste any time, particularly if it means I could be hurting my hearing.  Why did my onc suggest to my PC just the Lasix alone?  I am to check in with the onc in a few days.  Maybe he forgot that I had a rash with Sprycel?  That suggests an immune-mediated reaction and would support using prednisone.

 

A week after I am to email the onc, I'm to see the PC.  She had mentioned doing a thoracentesis if I'm not better.  Is that too soon, especially without a trial of the prednisone first?

 

I am clogged with incessant worry, largely because I don't feel good and two weeks seems too long to wait to START the right therapy in order to get better.  Plus, my off-the-TKI clock is ticking.  But also I have that old familiar feeling that my doctors are just not up to speed on this. I'm worried about PAH and PH and now I'm worried about that dust-induced pneumonitis thing, and COPD - just EVERYTHING!  Can anybody help silence my hypochondriacal monkey mind? 

[Marnie]

Thoracentesis is not a big deal. I didn't do any of the drugs you mentioned. I just went off sprycel for awhile and had them drain my lung. It worked (twice). Now I'm on ~25 mg and having no further problems with pe. Good luck.

[kat73]

Thanks, Marnie.  I don't understand why there doesn't seem to be a clear best practice to follow on this.  I am really sick and tired of being sick and tired. 

[Marnie]

I think treatment depends on how much fluid is in the pleura.  Did you have an x-ray or ultrasound?  Not sure that the x-ray would give a definitive answer, but the ultrasound would perhaps.  My oncologist wasn't really involved in the thoracentesis decision.  I let my p.e. go until I just about couldn't breathe.  Went to my PCP.  She did an x-ray and thought I had pneumonia, so put me on antibiotics.  Didn't get better.  A week later, I mentioned to her (again) that P.E. was a possible side effect of my med, so she sent me to the hospital for the thoracentesis. 

 

It wasn't a very uncomfortable procedure, except that I had a partially collapsed lung, and that caused some pain, but tolerable.  They drained almost 2 liters of fluid out, which was pretty impressive.  The doc that drained it said that they have patients who have them done routinely every couple of months.  Not a problem except, of course, that there is always a small risk of infection. 

 

After the thoracentesis, I called my oncologist to let him know what was going on, so that he was at least in the loop.  He had me take a Sprycel break, but it wasn't long enough and so I developed a second p.e. which they drained awhile later.  After the second one, (I think. . . I'd have to check my records to be sure), I worked with my oncologist to find a balance between low enough dosage to keep p.e. at bay, but high enough dosage to keep cml at bay.  It took me a long time to get back down to 0.000, but I'm finally there.

 

So, I guess what I'm saying is that if your lung capacity seems compromised, you might want to take matters into your own hands rather than waiting on your onc.  That said, perhaps trying some of the medications you mentioned might have helped me out, I don't know.  I didn't ever do any diuretics, or whatever other meds are used for p.e.

 

Good luck.  I don't know what your dosage is, but I hope you are able to lower your dosage.  It helped me with other side effects, as well.

 

Marnie

[kat73]

Thanks, Marnie, for the very helpful account of your experiences.  I've decided to stay the course; I'll hit my check-ins and tell each doc what's going on from my perspective and we'll see what comes next.  The past two days, in the afternoons, I felt a slight improvement; it seems to wear off, though, and in the morning I'm pretty miserable.  The last thing I want is for them to increase the Lasix!  I sure don't like it.

 

I had just switched from 70 down to 50 Sprycel - haven't had a chance to start before this happened.  I hope I can stay on Sprycel, as you and Pat have - I really like it, compared to the nightmare of Gleevec (for ME.) 

[hannibellemo]

kat73,

 

When you have a pleural effusion of any size your lung is compressed to some degree from the fluid pushing it up into your chest cavity. When the fluid is withdrawn that causes the lung to begin to expand with each breath. That can cause some discomfort and coughing. The techs stopped removing the fluid shortly after I began to cough. There is some danger in removing too much fluid at one time:

 

• Air in the space between the lung covering (pleural space) that causes the lung to collapse (pneumothorax)
• Fluid in the lungs (pulmonary edema )
• Bleeding
• Infection
• Liver or spleen injury (rare)

As you can see, this is probably not a particularly good way to deal with pleural effusion over the long haul since we generally have the option of trying a different TKI. 

 

Because of my earlier rash (which I had only once shortly after reducing my dosage) I tend to think my effusion was an immune response, especially since it reacted quite quickly to the steroids vs. the diuretic. No proof of that. Interestingly, to me anyway   , my rash was restricted to the tops of my toes.

 

I've been on 50mg since 2012. As Marnie said, it took both of us quite awhile to get back down to where we had been and (for me) another 2 years to get to PCR.

[kat73]

Pat - I had several cycling episodes of odd rashes in the early years before things seemed to settle down with Sprycel, and I think I agree with you. that this is an immune-mediated reaction.  I would put my money on prednisone right now, but of course, I'll defer to the ones who went to medical school. . .  Anecdotally, I've noticed here and there offhand remarks about pleural effusions tending to crop up at the point at which patients have reached PCRU or close.  Interesting.  Johns Hopkins has gone to a new way of reporting where they use 0.01% IS as their cut-off; the last 2 or 3 of my PCRs have read some version of "at or below the quantifiable limit 0.01%IS". 

[Marnie]

I'm very bummed to find that my "lumpy head" rash seems to be back.  Darn.  It's not bad, but it's there. 

[kat73]

It's just so crazy the way these things cycle back again and again!