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Dasatinib no longer effective, what next?

I was diagnosed in November 2016 with CML
After 9 months I was deemed unresponsive to Imatinib, subsequently developed a rash to Bosutinib after 2 weeks and was on 50 mg Dasatinib and 2 injections of Neupogen weekly (this last to prevent the Neutrophil count dropping too low).

My PCR counts since being on Dasatinib continuously.
08/08/18 51.00
12/09/18 50.8
30/10/18 30.0
28/11/18 21.0
03/01/19 11.0
19/03/19  7.65
18/06/19  9.64

My haematologist took fright at the rise and increased the dose to 70 mg Dasatinib and 2 injections of Neupogen weekly.

On 27th August my platelets dropped below safe levels and I was taken off Dasantinib.

We are currently waiting on the results of genetic screening and there is talk of going back on Imatinib or using Elthrombopag to increase the platelet count.

Any feedback apppreciated. Thanks.

I would never take Neupogen

http://www.bloodjournal.org/content/109/8/3125?sso-checked=true

Neupogen stimulates CML. It is acting counter to sprycel. And increasing dose of sprycel may actually decrease spyrcel's overall effectiveness because higher dose sprycel suppresses your natural immune system.

The best way to manage low neutrophil count is to temporarily stop taking sprycel to allow your blood system to recover naturally. And then "pulse" on again off again dosing as your body adjusts. Neupogen should be for patients who do not have blood cancers, but need white cell stimulation or are dealing with chemotherapy for other cancers.

I learned this from my research oncologist. I had the  same issue as you - and instead of neupogen shots, he stopped the drug and monitored my blood counts weekly (CBC) until my neutrophils were high enough. And then he re-started me on 20 mg sprycel to test blood recovery. I had to do this three times - re-started spyrcel, neutrophils fell, stopped therapy, recovered and then re-started therapy. Each time, neutrophils fell, but not as low as the previous cycle. Eventually I stabilized. I never had to increase my sprycel dose. I remained on 20 mg and  my PCR plummeted. I am currently undetected and continue to take 20 mg. You could too.

Discuss this with your doctor. Suggest no taking neupogen as it is likely stimulating your CML. If he disagrees you should consider a second opinion. Also - if your blast cell count percentage is near zero, you have plenty of time given your current PCR to pulse on and off to get your neutrophils stable. Just stopping those neupogen shots alone should crater CML.

It's unfortunate practice of medicine is more art than science. Getting your treatment correct unique to you requires vigilance.

 

There is research and literature showing that Ponatinib can be effective where Dasatinib (and all other TKI's) are not.  I would consider or ask about low dose Ponatinib.  It is good that you already did screening so perhaps something will show up and give you a better idea where to go next.  I hope your numbers drop soon.  

I think the result of the mutation testing will help inform the decision on what's next. Both of the suggestions above are options, depending on the results. Good luck.

Thanks for your advice. Looking again at the leaflet for Neupogen one of the 'Very common side effects' is 'decrease of platelets...'. I don't know how I missed this. I've read the article you sent the link for. It will take me a few goes to get my head around it. I haven't posted much on the forum but I have always found the advice sound. Thanks to everyone for their support.

Hey Scuba1 My doctor is trying to put me on Neupogen. I have been off of Sprycel for a month and my WBC is at 3.26 and my neutrophils around 1.5. I unsure what other options I have. my BCR was around 10.5 on my 6 month check up. I got diagnosed around May this year. Any advice would be helpful!

 

Thank you

Hey Scuba1 My doctor is trying to put me on Neupogen. I have been off of Sprycel for a month and my WBC is at 3.26 and my neutrophils around 1.5. I unsure what other options I have. my BCR was around 10.5 on my 6 month check up. I got diagnosed around May this year. Any advice would be helpful!

 

Thank you

Your neutrophils at 1.5 are fine to stay at indefinitely.  Only worrisome below 1.  It takes a bucket-load of time for blood counts to normalize (couple of years) and even then they often stay on the low end of normal forever.  All TKIs have this effect, to a greater or lesser degree.  Stay away from Neupogen.  It's far, far more important to get back on any TKI ASAP and stay on it consistently until you reach close to or in MMR.  And, just so you know, you aren't a wrong to be worried about all this - just new!  We all have wandered in this wilderness. I've been at this 12 years and I can't believe the doctors still give so little guidance in the beginning, when everything seems to be falling apart at once, or at least it feels that way to the patient.  

Your doctor is mistaken to put you on neupogen. Your WBC/neutrophils are fine (i.e. > 0.7). No reason to "stimulate" the cancer (CML).