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Consistent Low Counts on Sprycel Moved to Gleevec What to Expect ?

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Hello Everyone,

I was diagnosed on September 2017 with PCR 50%. Here is my history so far.

Started with Sprycel 100 MG. Experienced low platelet and neutrophil and rbc. Reduced to 70MG. Counts constantly fell. Reduced to 50MG. Same condition. Doc stopped Sprycel on march 26 2018. Had frequent interruption during this period to let the counts go up. And PCR was 6% when stopped Sprycel on March 2018. Practically could not be on constant medication for 3 months during this 6 months period (Sep 2017 to March 2018).

Started on Gleevac 300mg from May 2018. Initially platelet dropped quickly. 125 to 105 on first week and 105 to 77 on second week. But, on 3rd week its down to 72. Fell down a bit but not as fast as first two weeks. Neuthrophil and rbc and Hemoglobin are good and has upward trend. No drop. PCR result is coming next week. Will see if it is increased because I had treatment interruptions.

Is there anybody there had a same situation ? 

And, can you all kindly share what your experience says about about this case ?  What will I do if platelet drops again. I am worried.

Best Regards

Sid

 

Hi Sid,

You gave up on Sprycel too soon. Gleevec will not give you the same response.

I went through almost exactly what you were going through.

Your body is new to treatment. It has to adjust. Frequent drug breaks along with dose reduction is the protocol when dealing with myelosuppression. Look how quickly you fell to 6%. Many of your CML cells were being killed before new normal cells could be made. But over time equilibrium is restored. It can take a year or more for that to happen. What you needed to do was reduce your Sprycel dose to 20 mg and keep testing for low blood counts - stopping if necessary to let your system recover. Over time you would notice your blood counts stabilizing and then increase to normal - ALL THE WHILE your CML as measured by PCR keeps dropping. If PCR doesn't drop you can increase dose to 40mg - the key here is to start low and work up. NOT the other way around. Doctors who are not experts in CML don't know this about Sprycel. Sad. You should go back to Sprycel it is working for you.

I am on 20 mg Sprycel - prescribed by my doctor because I had severe myelosuppression (ANC < 0.1) - much worse than yours. I had the same fears. My doctor, who is an expert in CML, told me that low dose Sprycel will likely work for me. I was off drug to let my system recover and then put on 20 mg. My counts dropped again, but not as bad and then slowly rose to near normal. My CML is now "undetected" (PCRU). I am still on 20 mg Sprycel and will stop soon to test treatment free remission.

Hi scuba .. i was on sprycel count crashed started on 100 then 70 ..50 then 20 .. i loved it but it was doing a job on my platelets ..pcr 0.007 consultant took me off .. now platelets kept droping had platelet transfusions (3) but they dont seem to want to rise again its been 8 weeks now im scared daft.. bmb in the morning ..😣😣 any advice plz

Hello Scuba,

Thank you so much for your response. I was also wondering if we gave up on Sprycel too soon. My idea was we will stick to low dosage of Sprycel .. have breaks if counts gets low enough .. but ultimately reach to desired PCR levels. But, my doc didn't want to go down to 20mg. I am not sure why. And honestly, I was quite confused and frightened with all the changes happening and could not decide if I suggest something which my doc doesn't want. But, I think I should have requested him to reconsider 20mg Sprycel.

I am thinking to see a CML specialist to have a second opinion on my case.

Regards

Sid

Hello Sharon,

Sorry to hear that. I can exactly relate to your pain. I feel the same. In fact I think we all do. But we learn to adapt to this.

When I was on Sprycel there was a time when my counts got too low. Platelet < 19K/ul, ANC < 1. My platelet took 7-8 weeks to recover. Every one responds in a different way to these TKIs. If you don't mind me asking, what is your platelet count now ?

Please don't worry. You will be alright. Wish you all the best.

Regards

Sid

As long as you have no blast cells (or less than a few percent), lowering dose to test response as well as deal with myelosuppression is a good path to follow. CML is a SLOW disease when in chronic phase. You probably had it for years before it became something you felt and went to the doctor for tests. By taking Sprycel initially, you knocked the disease back which is why you bought time to experiment on dose. Getting the dose right for each of us is so important. It's a shame that doctors who don't know keep pushing one size fits all .... i.e. 100 mg Sprycel.

Now they are finding out that lower dose might actually be better and higher dose - damaging.

https://learningcenter.ehaweb.org/eha/2018/stockholm/216328/jangik.lee.t...

Seems counter-intuitive until one realizes that high dose Sprycel, due to its suppression of the normal immune system, is also preventing the body from attacking CML. Lowering the dose provides a balance in order for your normal system to also defeat CML while Sprycel is working as well. For me - when I lowered my dose to 20 mg, my PCR plummeted. I am a sample of one - so who knows. But trying it is of little risk. The upside is you may find your PCR continues to drop AND you lose the side effects of myelosuppression. Imagine that.

Right now you know more than your doctor. Show him the article linked above. See how he reacts.

All the best

Hi sid .. they was 7 but ive had another transfusion so not sure . Im just so worrid because they are taking so long to go bk up .. if they will go bk up ..😣

Don't worry friend. Keep faith. It will go up.

Thank you ..im scared daft x

 

You may need to give your body extra raw materials to build platelets:

http://www.rediff.com/getahead/report/health-9-foods-to-increase-blood-p...

I do tend to look at nutrition as a way to assist the body's natural process. You have a big "hole" caused by dying CML cells (good thing). And your normal blood system needs raw materials to re-build a normal blood system. Making sure you are eating well will help.

Reality,however, is that the body is pretty good at scavenging around to build what it needs. Proper nutrition will help speed that process up.

Good article. Thanks  Scuba !

Latest CBC shows platelets are down to 47K (from 72K last week), Little drop in all other counts except HCT. I started on Gleevec 300mg three week's back. I am really not sure whats going wrong. My counts are showing the same drop pattern as it was for Sprycel. Feeling sad. Will it ever be stabilized ? :-(

Sid . stay strong ..i know the feeling it can be overwelming and feels never ending ... things will get better they have to im the same as you my counts have taken a dive and dont want to come bk up 😁 ive had 4 platelet transfusions and 2 units of blood in the past 5 weeks .had a bmb wed to see if bone marrows supprest from all the chemo meds ..cml isnt for the faint hearted is it .. just when you think your doing well we end up with a blip of some kind .. you will get there and so will i.. x

Thank you Sharon for your kind words. Praying for the best for both of us.