Pleural Effusions

Pleural effusion can be an unfortunate side effect of Sprycel. It is caused by Sprycel's interference in the cells lining the lung which regulate fluid balance. There does seem to be a genetic component which makes some people more susceptible to it than others. It is also Sprycel dose dependent.

Pleural effusions are reversed when Sprycel is stopped. Restarting Sprycel on a much lower dose (i.e. 20mg) may avoid repeated P.E. events.

Keeping in mind that P.E.'s are excess fluid in the lungs, you can help minimize the excess fluid by forcing your body to reduce fluid load. Not knowing your diet, it's possible you brought on this P.E. event by eating foods with high salt content and otherwise increased your blood pressure (helps drive fluid balance). You might try reducing your salt intake (low sodium) and drink more tea and if you like coffee increase it by a cup or two. Tea and coffee are mild diuretics which will help lower excess water. Exercise sufficient to induce sweat is also an excellent way to both remove fluid from the lungs as well as from the body as a whole. It may or may not work but perhaps worth a try.

Losing weight by reducing carb intake can also help dramatically. For each gram of "sugar" (i.e.glycogen) burned, 4 grams of water are expelled from the body. Eating more vegetables and some protein can also help drive fluid balance out of the lungs. The less excess weight on your body the less excess fluid available to trigger pleural effusions. Stop eating food from a bag. They're loaded with salt. Read labels on anything you eat and note just how much sodium is added. Sodium is important for health - but excess is not. There is plenty of sodium in regular food.

If this doesn't work, you may need to switch drugs, but being able to stay on Sprycel would be best. Research shows that those who do have P.E.'s due to Sprycel also have very good CML remission rates. Why this is no one knows. But you may be able to have a great response on low dose Sprycel. It all depends on your current PCR level so you can test.

https://www.sciencedirect.com/science/article/pii/S2152265016305687

So sorry to hear of your PE troubles!  Scuba's diet advice is perfectly sound except for one thing - you did NOT bring this on yourself by how you ate. It was the Sprycel.  Period.  You could not have prevented it, as you are one of the almost 30% of Sprycel patients who get pleural effusions as a side effect.  There are a few things that have been learned since Sprycel was in clinical trial:  First, you must completely stop the drug in order to get rid of a pleural effusion (reducing dose will not work while you have an active PE).  Prednisone and diuretics are largely ineffective, as Dr. Cortes wrote in a comprehensive article about management of pleural effusions and Sprycel. Two, you have to wait until the pleural effusion is COMPLETELY GONE before restarting Sprycel at a lower dose, or the PE will kick right back up into high gear.  This can take more time than most people used to think - more than just a few weeks.  Meanwhile, keeping a watch on your possibly rising PCR, your onc may want you to go back on.  It's a delicate dance between getting ALL the fluid gone and the danger of the CML gaining foothold again. Try and hold out as long as safely possible.  Third - they used to start people on Sprycel 140 mg, then realized they got too many pleural effusions and started making 100 mg the starting dose.  The thinking now is that for many people, even that is too high and that starting at 70 mg is effective and less likely to trigger PE.  You and I, however, are unluckily also vulnerable at 70 mg (and I can't even get by with 50 mg).  The jury is out on 20 mg, for lots of reasons, but I currently am trying that.  At 25 mg (my leftover 50's cut in half) I have been able to get back down to a PCR of 0.005% IS.  Yesterday's chest x-ray showed the same (stubborn!) extremely minimal fluid, but it has not increased (as it did, immediately, on 50 mg).  This is well below a Grade I side effect, and yet still worrisome, as my CML specialist does worry quite a bit about drug resistance developing at such a low dose of Sprycel.  (This is something many people on the discussion boards dispute.)  He wants me to switch to Bosutinib, so remember that you still have that option.  Hope this helps.

Thank you so much! Great suggestions 

Hannibellemo,

You might consider lowering your sprycel dose to 20 mg and reduce your P.E. risk further. Since you tested a mini-cessation of 3 months and learned after returning to Sprycel you quickly regained ground, You can easily test if 20 mg sprycel works for you. If not, go back to 50 mg.

I have a strong suspicion 20 mg will keep you in MMR or better.

Sprycel is a threshold drug, not a dose dependent drug. They didn't know this during the testing trials, but they know it now. The key is to find each patients threshold. Unfortunately - dosing a CML patient starts with the highest tested dose. They have it backwards in the case of Sprycel. A newly diagnosed CML patient who is in chronic phase with zero blasts and is prescribed Sprycel should start with 20 mg. NOT 100 mg. After monitoring CBC's weekly to verify no myelo-suppression, a PCR and FISH should be taken at one month to verify response. If no response, then up the dose to 40 mg. If a significant response occurs, then maintain 20 mg and test again in one month. If response deepens and FISH drops dramatically - then 20 mg is the threshold and should be the prescribed longer term dose for the patient. The above is my OPINION. I am not a doctor. But I do have experience with Sprycel dosing, myelosuppression and the research going on around Sprycel Dose. It is also what I did personally to manage my CML. And it wasn't my idea. It was my doctor's.

I have no side effects whatsoever on 20mg that I can feel. I still want to test zero mg Sprycel so that I can avoid side effects I can't feel ...