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Spyrcel and Pleural Effusion

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Hello Everyone,

I am very happy to have found your site.  The LLS site had been so helpful because together we have a wealth of knowledge and sharing gives us all a much better understanding of how to deal with all aspects of CML.

Here’s a brief history:

I am a Marine Corps veteran who was involved in the toxic water disaster at Camp Lejeune, NC.
Diagnosis of CML confirmed in April 2014 after a bone marrow biopsy.

Started treatment with Sprycel 100mg, Developed painful blood blisters in my mouth with a host of other side effects. Dose was dropped to 80, 70, 50,20 and then 20 mg every other day up to January 2017.

I reached PCRU in July of 2015, maintained until January 2017. My most severe side effect has been a recurring pleural effusion which caused a major problem with shortness of breath and has been treated from March 2016 to the present by having catheters implanted first on the ride side and then on the left side allowing me to drain at home together with weekly thorocentesis at the hospital. Eventually one side of the pleura became loculated and only a small amount of fluid remains.

My oncologist decided in December 2016 to switch me to Gleevec 400 mg to alleviate the pleural effusion.  Immediately, I experienced full body edema along with the daily 1000 ml of fluid from the pleural effusion. After 40 days, my oncologist said we should take a three month “vacation” from the TKI’s.  In April my BCR-ABL was 0.039 and in July 0.044. Oncologist started with 20 mg Sprycel in March then raised it to 50 mg in July. Breathing issues were continuing to worsen.

Opted for a new oncologist who immediately switched my medication to Tasigna 150 mg. I’m back to PCRU and feel much better. The pleural fluid fluctuates between 450 ml and 800 ml on a daily basis so I can breathe much easier.  Hoping this continues to lessen.
.
Still concerned about the QT Prolongation side effect because of my cardiac history, but my oncologist, cardiologist and cardiovascular surgeon are monitoring closely.

Other major side effects are Reynaud’s syndrome, one time severe rash treated at the ER and ocular ischemic syndrome.

I am grateful for the development of the TKI’s which can control CML but am hoping to find a balance with the least amount of drugs and less debilitating side effects. I’m sure that is a very common wish for all of us. Here’s to our success!  Any and all comments are cheerfully accepted. Looking forward to good discussions.

Glad you are here -- though not for your diagnosis! -- and thank you for your service. I live in the US too. Is there a presumption that your leukemia is connected to toxic water exposure? Very interesting!

I found this wonderful community shortly after CML diagnosis April 2017. The LLS site did not do much for me, but I have learned a lot here. I shared the "Ten facts about CML" link with my sons to help them understand that it is not a fatal disease (anymore). I have not achieved MMR yet but am extremely optimistic that I will, soon, based on others' experience detailed here. My TKI is Gleevec, only one I've used and it's going pretty well.

Take good care and I hope you find the perfect dose. Someone here will have some good advice for you, I'm sure!

Good to see you here Chevyflame!

Hi Justine,

Thanks for your reply. I've included a link concerning the toxic water disaster. https://www.militarytimes.com/news/pentagon-congress/2017/03/14/va-final...

The VA finally acknowledged that service at Camp Lejeune's toxic water is presumptive for CML and a host of other illnesses. 

Best wishes to you and your family.

Thank you.  I'm looking forward to interacting with everyone.

Sprycel can thin out the Plural Membrane
surrounding the lung. Allowing body fluids
to permeate through this lining. Effusion.
If you have a propensity for this to happen anyway,
Toxic exposure for instance.  Not good to use Sprycel.
Perhaps another TKI.
Is there a membrane thickening medicine?
Maybe a nutrient. Who knows.
You maybe in a situation where a higher dose of medicine,
is worse then the disease. A difficult position.
Like a butterfly too heavy for the Flower...
OK, Ok, I know that was weird.

Marijuana is legal here. in the US.

Romo

Romo,

 

Not too weird. Right now I'm happy to float like a butterfly and hoping the change to Tasigna will at least lessen the amount of pleural effusion and maybe,  just maybe,  let me sting like a bee and have it stop completely. I'm adding visualization to my arsenal against CML. Whatever helps.

Chevyflame

Hope the Tasigna will  be the TKI for you.Third time is the charm :) Glad you also  have a new oncologist. With this disease I really think you have to be your own advocate or have someone advocate on your behalf to ensure you are getting appropriate care. I have learnt so much from  patient experts. I hope it will not only benefit my husband but the other CML patients treated by his oncologist.

best wishes

louise 

Hi and welcome to our forum,

I share your concern that you have a diagnosis of Long QT syndrome and are being treated with nilotinib which, from a brief search, is contraindicated for this condition- see the following snip from National Cancer Institute, https://www.cancer.gov/about-cancer/treatment/drugs/fda-nilotinib 

'....this risk is described in a boxed warning in the labelling. Nilotinib should not be used in patients with hypokalemia, hypomagnesemia, or long QT syndrome. Drugs known to prolong the QT interval and strong CYP3A4 inhibitors should be avoided. Patients should avoid food two hours before and one hour after taking a dose. ECG’s should be obtained to monitor the QTc at baseline, seven days after initiation, and periodically thereafter, as well as following dose adjustments'.

and here: https://www.drugs.com/ppa/nilotinib.html

Contraindications
Hypokalemia, hypomagnesemia, or long QT syndrome

Canadian labelling: Additional contraindications (not in the US labelling): Hypersensitivity to nilotinib or any component of the formulation; persistent QTc >480 msec Dosage adjustment for nonhematologic toxicity:

Amylase or lipase ≥ grade 3: Withhold treatment, monitor serum amylase or lipase, resume treatment at 400 mg once daily when lipase or amylase returns to ≤ grade 1

Lipase increases in conjunction with abdominal symptoms: Withhold treatment and consider diagnostics to exclude pancreatitis

Clinically-significant moderate or severe nonhematologic toxicity: Withhold treatment, upon resolution of toxicity, resume at 400 mg once daily; may escalate back to initial dose (300 mg twice daily or 400 mg twice daily depending on indication) if clinically appropriate

Dosage adjustment for QT prolongation: Note: Repeat ECG ~7 days after any dosage adjustment

QTc >480 msec: Withhold treatment, monitor and correct potassium and magnesium levels; review concurrent medications

If QTcF returns to <450 msec and to within 20 msec of baseline within 2 weeks: Resume at prior dose

If QTcF returns to 450 to 480 msec after 2 weeks: Reduce dose to 400 mg once daily

If QTcF >480 msec after dosage reduction to 400 mg once daily: Discontinue treatment

I do not want to cause you any further worry or alarm - and as you say your new doctor is hopefully monitoring you very closely- but as you have concerns and you have already have intolerance to, dasatinib and imatinib I would suggest you talk with your doctor about the possibility of trying bosutinib.

Sandy

I have been on Tasigna 150 mg/day since reaching PCRU 5 months ago.  I still have some side effects (occasional benign heart arrhyhtmia which is helped by a little xanax of all things) and mild dry mouth.  I feel much better on this dose than I did on any of the higher doses I was on and have far fewer side effects.

Regarding QTc prolongation, I assume you had a baseline EKG and that your Qtc and QT intervals were in the normal range.  I had an EKG once a month for the first 3 months and now every 3 months.  I think it is very good that you are on this low dose as you are less likely to have serious side effects.  I never had breathing issues/pleural effusions on any dose of Tasigna, so I think your incidence of this will lessen over time and hopefully go away.  Good luck

Sandy,

 

Thank you for the solid information in your post.  I've just spent three days in the hospital because my breathing and pleural fluid rapidly worsened.  My oncologist, cardiologist, admitting doctor ran an extensive series of tests to determine the cause. Cardiac issues were monitored and ruled out. Diagnosis: pneumonia, which was a surprise because I had absolutely no symptoms and have had my pneumonia shot.. As soon as I was placed on an antibiotic my breathing returned to normal and the pleural fluid dropped from 1200 ml to 325 ml. We are going to stay on Tasigna and continue with close monitoring of blood work and EKG's. I am grateful that my oncologist and cardiologist work together seamlessly.

I am still concerned about the  risks from the QT Long Prolongation because of my cardiac history but for now I think I'll trust my doctors and continue to question everything around this issue.

This forum is a wonderful way for all of the CML Patient Experts to share information and experiences easily.  When I was first diagnosed in April 2014, the LLS forum was a great resource to gain an overview of the side effects from Sprycel and Gleevec from actual people. I am glad to be a part of this forum.

I'm hoping that the pleural effusion will gradually dry up. Except for a brief bout with pneumonia, the pleural fluid is on a downward arc, The other side effects I have are tolerable and much less serious than Sprycel and Gleevec.

Hopefully I'll be able to have my pleural catheter removed in the near future.

Here's to safe travels on the CML pathway !