11 replies to this topic

[chevy flame]

Is anyone else having problems with plural effusion caused by Sprycel medication?  I started taking Sprycel in March of 2014.  I developed breathing problems and started having a Thoracentesis on my right side once a month removing more than 2 liters of fluid each time.  We planned our vacation that I would get drained just before leaving.  In less than one week I ended up in a hospital to get drained before I could fly back home.  They removed 2.5 liters even though I was drained less than a week before.  Seeing how I was told I could not fly before getting drained, I think it had to do with the difference in air pressure at altitude. 

After returning home, I started having a Thoracentesis on the right and left side every week.  In August of 2015, I had a PleurX Catheter inserted in my Right side and began draining 1 liter, 3 times a week and going to the hospital to drain 1+ liter from my Left side once a month.  In December of 2015 I had to go to the ER because of dehydration and had to follow up with a Nephrologist.  The Nephrologist told me I had to drink at least 2.5 liters of fluid a day; I had to replace what I was removing from my body.  In January 2016, I was instructed by my Oncologist to drain 1 liter every day from my right side.  Now in May 2016, I was instructed by my Oncologist to stop draining every day and go back to every other day because all of the draining was throwing my electrolytes out of balance.  He said at this point it is more a balancing act. 

My Oncologist is talking about switching my CML medication.  I told him that I have been able to tolerate the side effects of Sprycel and really don't want to change.  Is anyone else having problem with plural effusion from other CML targeting medication? 

[pammartin]

Just keep watch on yourself and with your specialists.  I had some PE but ended up with a nasty case of PH that still haunts me.  The Sprycel is great for causing this.

 

Be your own advocate, if you really don't think you feel well or your breathing is off, fight till you get someone to listen.

 

Good Luck!

 

Pam

[Red Cross Kirk]

If you haven't already tried it, maybe you could consider a reduction in your dose of Sprycel?  If your CML has been under control with your current dose, then a reduction may relieve the PE and still keep the CML in check.  What is the history of your response with Sprycel?

[chriskuo]

Given the severity of your pleural effusion, you should review your dosage if you have responded well to Sprycel.  However, It may well be time to consider Tasigna or Bosulif.

[mlk210]

Have they given you a drug break during this? I got a PE in December 2015 (16 months after starting 100mg Sprycel). I was off the medication for 3 weeks. Started on 70mg and lasted 2 months before another plural effusion. I think I should have given my first one more time to clear up completely. They never gave me a thoracentesis, rather waited for it clear up on it's own. Stayed off meds for almost a month and I am now on Gleevec. I have no idea how you are doing what you're doing. After two PE's I said I'd try something new. Best of luck. 

[hannibellemo]

chevy flame,

 

I hate to think of you undergoing all of those thoracentises! I only had one and though I found relief it is not something I would want to do on a weekly basis and definitely not something I would want a permanent port for. I think of infection opportunities and that is scary to me.

 

Many of us have done very well on a reduced dosage after pleural effusion. Some haven't and it may be that you will be one of those. Quite frankly, it doesn't seem like Sprycel is the best choice for you and you might feel much better on a different TKI.

 

It is definitely something to look into.  Good luck and thanks for sharing your experiences with us. The more we know, the better off we are.

[chevy flame]

I would like to thank you all for your input and thoughts.

 

 

Early Last December I started to itch all over and break out in hives.  We went to the ER but by the time we got there I had big water blisters all over.  I dare not scratch or touch them.  Everyone was asking about food allergies.   They gave me a dose of steroids in the IV and I followed up with oral meds for five days.   By the end of December I was back in the ER, severely dehydrated getting IV fluids.  In January of 2016 I was awakened by severe pain in the back of my left eye.  We came to find out just recently this was another side effect of CML and Sprycel.

In January I was told by my oncologist to drain one liter every day.  In June I was instructed to drain 1 liter every other day because my electrolytes were out of whack. Draining every other day resulted in extreme discomfort due to fluid retention.

We have been searching for all and any information on Sprycel and recently I have found a web site with updated information as of 16-May-2016, stating that a 20 Mg dose is available now.  

 http://www.medicines.org.uk/emc/medicine/26080/SPC/Sprycel+20mg,+50mg,+80mg,+100mg+and+140mg+Film+Coated+Tablets

At this point I am going to tell the Oncologist that I want to drop the Sprycel dosage down to 20 Mg and see what effect this will have on my fluid retention and continued remission.

[Buzzm1]

chevy flame, as far as I know, Sprycel has always been available in 20, 50, 70, 80, 100, and 140mg doses.   you need to get a new oncologist; there is absolutely no excuse for you having gone through all that you have, without your dosage either being reduced due to the side-effects, or switching you to another tki.  If you do switch to another tki, starting at a lower dose might be advisable due to your possible heightened sensitivity.

 

you haven't mentioned your PCR reading history?  are you undetectable (PCRU)?

[chevy flame]

Thank you for your very helpful input.  We have been discussing switching my Oncologist.  Reviewing my history it seems as though he has dropped the ball a few times. 

I was on the phone with the Oncologist yesterday afternoon and tried to explain my most recent problems with Sprycel.  He has a habit of muddling the conversations with non-pertinent old questions and his thoughts.  He is definitely against dropping down to 20 Mg.  I said I was in remission since last June and I thought this was just for maintenance.   He does not feel that a reduced dosage will have a major effect on my pleural effusion.

As of yesterday June 6^th ,  I have stopped taking  Sprycel.  He asked that I call him in two weeks and let him know how I feel.  I can already feel a difference in my breathing. I will then start taking Gleevec.  In July my wife and I will meet with a TKI Specialist who will explain all of the side effects I have been through and possible side effects while taking Gleevec.

Our pharmacy, Walgreens offered a consultation to review my medications and lab results. They have made some interesting findings which we will discuss with the four doctors , (Cardiology, Oncology, Nephrology and Vascular Surgeon ) we see on a regular basis. I would highly recommend this service to anyone who is dealing with multiple medical issues.

At this time I am hoping to get some quality of life back. 

 

 

Thank you all.

[chevy flame]

Buzz,

I have been in remission since June of 2015.  CML, ABL-BCR has been undetectable testing every 3 months.

[Gail's]

Chevy flame, what an ordeal! I'm glad you're feeling better off Sprycel. I have also found my pharmacist to be very helpful. Best to you!

[Buzzm1]

chevy flame, although Gleevec is the least toxic of all CML tki's, it is still a toxic med.  Assuming that you are being switched to the full 400mg dose, when you have been PCRU for a year, there should not be any hesitancy on either, your part, or your oncologist's part, that if any debilitating side-effects do occur, to lower your dosage.  After PCRU is attained and stability verified over time, it doesn't require a high tki dosage to maintain PCRU.  I'm a proponent of taking the least amount of tki necessary, especially over the longterm.