Sprycel

M.D. Anderson led the way in research on low dose sprycel (20 mg) effectiveness and in managing sprycel side effects such as pleural effusion and mylosuppression. Pleural effusion risk, in fact, is greatly reduced at low dose - and the impact is not linear meaning that cutting sprycel dose from clinical trial dose of 100 mg can lead to elimination of pleural effusion as a side effect when dose is lowered to 70, 40 or 20 mg. The lower the dose the lower the risk. Depending on your current PCR level, the protocol at M.D. Anderson is often to start at the lowest dose (20 mg) and work upward if needed. Many patients who respond favorably at 20 mg never have their dose increased. No reason too.

I am one of those patients. I am prescribed sprycel 20 mg daily (which I take every other day in anticipation of TFR) and have been 'undetected' for bcr-abl for over 3 years. I have no side effects which I can feel. And never experienced pleural effusion.

You might suggest to your doctor that you start at 20 mg first and test PCR at six weeks to verify effectiveness. You can always increase dose (40mg) if response is not sufficient. Tell your doctor you know of patients under Dr. Cortes' care (when he was there) who were prescribed 20 mg to great effect (and are undetected) leading to his publications on low dose sprycel. Dr. Alvarado is another excellent oncologist at M.D. Anderson.

(p.s. I was started at 70 mg for one week due and due to myelosuppression, my dose was immediately cut to 20 mg. Again, the idea was to start low, test for response (when zero or very low blast cells present) and increase only if needed. Increase was never needed. Lowest dose is best if lowest dose works.)

I don't know of any data showing response vs age / and dose.

What is your PCR level currently?

Any PCR < 0.01% is indistinguishable statistically from undetected. You  are in a great place.

At diagnosis I was in early accelerated phase (high blasts) and was started on 400 mg Imatinib (gleevec). Gleevec did not work for me and my first doctor wanted to increase my dose to 600 mg at that time. I changed doctors and was started on dasatnib 70 mg which lasted a week - dasatinib crushed my blood counts, but also crushed CML. After recovery and cessation, I was re-started on 20 mg and my trend downward accelerated. Once I improved my vitamin D levels, my blast count went to zero where it remains.

Thank you for sharing this information.

I have had chronic CML for 2.5 years and was put on Sprycel 80 mg.  I have done well on Sprycel and was at "not detected" IS% >5  at about 8 months into treatment.

This this fall I developed shortness of breath on exertion and dry cough.  The chest x-ray showed small bilateral pleural effusions, lower lobe atelectasis and possible pneumonia.  So, I was treated with Doxycycline for possible pneumonia and the cough resolve.  After completing the Doxycycline, my oncologist obtained a CT of the chest with showed persistent bilateral small to moderate pleural effusions and took me off Sprycel for 6 weeks.  A follow up CT of chest six weeks later showed residual pleural effusion.  Over the six weeks the shortness of breath on exertion has improved.  I am now at 0.0054 IS%.

My oncologist wants to change the treatment from Sprycel to Gleevec.  She did not address the option of considering a lower dose of Sprycel.  But now I am reading about treatment options with even lower doses of Sprycel. I am in the U.S.  I am wondering why my oncologist did not address the option to go with a lower dose of Sprycel?   I believe she may have concerns about recurrent pleural effusions if I stay on the Sprycel, which I have read is a possibility even with a lower dose. 

Your thought, Susan

I agree with Felix.  However, even at 20 mg the effusions can persist.  After stopping Sprycel completely, sometimes the effusions don't go away completely anyway. Everybody is different.  Some people can walk around with "minimal residual fluid", like me, with no symptoms. I vastly prefer dasatinib to imatinib, so I just chug along with symptom-less pleural effusion.  Nobody medical seems to have their shorts in a knot about it, including the pulmonologist.  So, try to stay off Sprycel for as long as it takes to resolve the effusions.  If you lose MMR you'll have to restart.  You could change TKI,  if you want to.  Don't restart dasatinib at any higher than 50 mg, and try to ask for 20 mg.  It is bothersome that the ELN guidelines (and the US ones, I think) STILL are setting 100 mg of dasatinib as the starting dose, and they are STILL not recommending lowering the dose beyond 50 mg.  So many of us are doing terrifically at 20 mg with minimal side effects!  I wish for more data on two questions:  Why not change clinical practice to do a baseline chest x-ray before starting dasatinib and then monitor for pleural effusion (by listening very low with a stethoscope down at the waistline) and its symptoms EVERY visit?  I think it is present much, much earlier than is reported in the literature.  The second thing I wish they'd do is study whether a starting dose of 20 mg would PREVENT the development of pleural effusions in the first place, while still whacking the CML adequately.