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Neutropenia and Sprycel 100mg


Off of sprycel to allow my counts to rebound, but in 3 days neutrophils only ticked up from .7 to .8.   I will be off until count is over 1.  So here is my question, based on the package insert, isn’t the standard protocol to now restart on a lower  dose once counts are over 1?   Based on what I am reading, if count doesn’t recover after 2 weeks, then when restarted should go down on dose.   I’m just gearing up to convince my doctor that 100 seems to have hit me hard but sprycel does seem to be doing something.   I was only on three weeks before neutropenia ....really hoping I tolerate this drug. 



Same thing happened to me on gleevec. I ended up with one shot of neupogen and then was restarted on the same dose. No issues after.

Thanks Aeje10327!

i keep reading similar stories in the forum but I can’t help feel overwhelming anxiety at times about this....but it’s really good to hear similar stories.  Thank you!


I had written a longer reply to this situation elsewhere on this forum, but can't find it.

I went through what you are going through - my neutrophils fell to 0.1 in one week while taking 70 mg sprycel. My doctor stopped my treatment and had me wait until my blood counts recovered (> 1.0). He did not want me taking stim shots (neupogen) as it can stimulate the cancer as well as normal cells. As long as blast cell counts were near zero, he told me we have time to work through this issue. It took several months of on again / off again sprycel before I stabilized. And we did this on 20 mg.

My doctor re-started me at 20 mg - he told me that 70 mg was too much given my response (severe suppression). He also mentioned that his experienced showed him that many patients who suffer myelosuppression also achieve dramatic deep PCR response at a much lower level of sprycel. That is exactly what happened to me. By the third cycle of 'on / then off', I was able to stay on 20 mg sprycel and my PCR plummeted. Eventually to "undetected" where I remain today. I never had to have my dose increased.

Show your doctor the above papers along with my story and suggest he re-start you on 20 mg and track your blood counts to verify your status. Once stable, track your PCR and if trends downward, you are in good shape. Also, lower dose means lower side effects. That is a big plus.

Thanks scuba.  I printed out the articles and anything I could find from your experience on here.  My plan is to show them to my Dr Jan 9th at my one month appointment.  Today I’m going to email the documents, my concerns and your story.  I am my biggest enemy at the moment. I have to admit that mentally I’ve hit a rough patch with this small hurdle worrying about the worse case.  

You are going to be fine. In fact - because you experienced myelosuppression (low neutrophils, in particular), your blood system including your 'leukemic' one is exquisitely sensitive to sprycel. This may actually be good news. It means your leukemic cells can't handle sprycel. Even a little bit kills them. That is what the low neutrophils indicates. So the correct action by your doctor is to lower dose once your neutrophils recover. And to keep 'pulsing' your treatment (on then off as needed) until your normal blood system takes over. You will be spared adverse side effects because of this. What takes other patients 100 mg and even as high a dose as 140 mg to achieve response (along with higher risk of Pleural effusions and related), you will likely achieve on a much lower dose (e.g. 20 mg). Right now, your CML neutrophil cells are getting wiped out and your normal system is suppressed in making new neutrophils. It takes time for your bone marrow to establish the new hierarchy of cells from new normal stem cells. Think of it this way - the leukemic hierarchy just got whacked - big time. There is a big hole in your blood system which tells other parts of your body to "stimulate" blood formation (neutrophils in particular). This stimulation is being held back by the very same sprycel. A lower dose will continue to pound away at the CML cells, but lessen the suppression effect on your normal system. And over time, your normal system will adapt. The key is to find the correct dose for you. I am betting that 20 mg will work, but it could be 40 mg or even 50. I am confident it is not 100 mg.

I feel no side effects from 20 mg sprycel. (although I still want to stop the drug in case of long term affects we don't know about yet).

Have your doctor reach out to Dr. Jorge Cortes (at Georgia Cancer Center) who is an expert on sprycel. He is the one who prescribed my 20 mg dose. He knows what he is doing. In the mean time, you should have weekly blood counts taken so you can track your recovery. The sooner you can re-start, the sooner you achieve success. And you will achieve success.

Thank you!  I’ve read everything I could find about  myelosuppression but nothing really clicked until this explanation... funny how you have to hear something a hundred times sometimes.  So my FISH was at 96 percent 3 weeks ago.  It only my makes sense that there  is a hole now.   On 12/2 PCR showed P210 above upper limit of detection.... so burden was high to begin with 

That is exactly what is happening. For many patients, their normal blood system ramps up quickly  enough to fill the "hole" as the leukemic system is reduced. But for others (you and me), the TKI drug can suppress normal blood making slowing it down. Coincidentally, this same suppression also affects the leukemic system such that in addition to getting "killed", it has a hard time regenerating. CML, in chronic phase, is slow. It takes years before you know you have it (i.e. symptoms). This is why stopping therapy is "o.k." to allow your normal system to recover. So long as you have zero to only a percent or two of blast cells.

One way to minimize blast cells is to make sure you have adequate vitamin D. In winter, I take 5,0000 IU's/ 10,000 IU's (alternating days) to keep my vitamin D level around 60-70 ng/ml. Once I did this, my blast cell count disappeared. Blast cells are very temporary cells. They do not stick around before differentiating into their end target cells. But only if they have vitamin D to "trigger" the differentiation.

When I was diagnosed I purchased all of the. vitamins you recommended and follow the regime you outlined :). I’m 100 percent on board with vitamin supplements and eating well.   I’m hopeful my Dr will agree to lower dose without much or any convincing.  I think you hit on part of it.  It takes years to develop CML but I was feeling mostly ok (thought I was stressed and any symptoms the last 6 months were due to that) and even with low counts I don’t really feel bad (we are on ski trip in fact), so when the Dr called to make sure I had actually stopped the Sprycel since I had only ticked up to .8 I was surprised that I hadn’t rebounded faster.  It’s all still a huge shock to me that this is real.  

I am forever grateful for your support and advice.... no one else can really understand what this is like.  

Hi, I failed to mention that my ANC (absolute neutrophil count) was zero. A few days off of gleevec and it was still zero. It takes a while for your normal cells to take over. Enjoy your ski trip!

Oh awesome thanks! That really good to know.... that you bounces back from zero but it just took a little while.  

Just received a call from the nurse that my neutrophils are back at 1.5 but platelets now at 30.  Is it strange that one recovers but the other continues to fall?  

Not strange at all. Our blood making system responds to signals and availability of "parts". You have been in short supply of neutrophils which triggers other parts of your body to send signals to the bone marrow to 'make more'. Blood making heading to platelets was diverted to making neutrophils (simplistic explanation). All of our blood starts out with a single type of stem cell which creates a few more specialized stem cells that can re-create our entire blood cell system through differentiation. As these cells divide, they respond to protein signals that tell them which kind of cell to become. Once a cell is committed it is taken out of "inventory" sort of speak.

Your platelets should begin to recover now that your neutrophils have 'filled up'. A sign that platelets are too low are red dots on your skin called Petechiae which reveals blood clotting issues. Bruising is another sign.

You should consider restarting sprycel at 20 - 40 mg as soon as practical. I was re-started at 20 mg and never looked back. Given your prior myelosuppression, you seem to be very sensitive to sprycel response as I am. Hopefully you will avoid repeated myelosuppression episodes - but only if you lower your dose and work up (if needed). As I mentioned, you probably will respond quite well on low dose and enjoy minimal side effects as a result.

It takes time and careful initial monitoring. Hopefully your doctor will agree to take you on this path. Remind your doctor that with few or zero blasts in your blood, you have time to experiment to get your dose personalized and response maximized without myelosuppression. CML is a very slow disease in chronic phase (i.e. no blasts).*

(*This is why many women who have CML are able to stop treatment for nine months during pregnancy. This assumes you have reached CCyR)

Thanks scuba.  Your responses mean so much to me.  I ask my Dr these questions, and while she does get back to me, the responses are no where near as understandable or complete.   I usually get something like “it takes time for both to come back to normal levels” and “some of my patients stay on low doses and maintain good results”.  I understand that she’s busy and I’m sure lots of patients have questions but it would be terribly isolating if this forum didn’t exist and you weren’t so supportive.  


happy new year and thanks again.