72 replies to this topic

[scuba]

I was taken off Gleevec for six weeks due to myelosuppression (very low Neutrophils/WBC).

One week my numbers recovered to near normal and I started Sprycel (70mg):

WBC:  3.2
Platelets:  352
Neutrophils:  1.5
Basophils:  8 (high)

Everything else normal

Today I had a one week CBC check-up and the numbers are below:

WBC:  3.2
Platelets:  270
Neutrophils:  1.19
Basophils:  1.5 (normal)

Everything else normal

Seems that after one week myelosuppression is rearing its head again.   TKI's don't seem to affect my red blood so much, but my Neutrophils get hammered.  Next week's test will be more defining if my Neutrophils continue to drop.  

Thanks for your thoughts.

[mck_001]

I wasn't as neutropenic as you were on 100mg of Sprycel, but started back on Sprycel at 70mg due to neutropenia/side effects.  What a difference in side effects!!  I feel great!  I'm eager to see if my bloodwork is as good as I feel and if my biopsy in march shows continued progress iwth CML, though....

I'll keep you posted on my blood counts...I go next week for a cbc.

[mck_001]

Thinking and praying for you!! 

[scuba]

Thanks, MK ....

I have to admit, I don't feel 70 mg. Sprycel at all.   I feel no side affects.  My cell levels have dropped, so the Sprycel is doing something.

Both of my Onc's (Dr. Cortes is primary) are not concerned.  They really feel this is normal and that I will respond (i.e. no myelosuppression like with Gleevec).   My RBC's are higher, I have more energy and my wife says I am "more frisky"...whatever that means.

I do have one side affect...my skin itches more.  No visible signs, just more itchy.  I can live with that.

I'll know in 3 months if this is going to work.  And if it does - then I will be impressed.

Biochemistry at work.

[mck_001]

I'm with Dr. Cortes, as well (he's primary for me).  One thing you can be sure of....you're in great hands...the best!!!

[rickpister]

Michael, it sounds and looks like you're body is responding well.  I take it you are pleased with the CML thus far.

[scuba]

"Michael, it sounds and looks like you're body is responding well.  I take it you are pleased with the CML thus far."

> No... I am not 'pleased with the CML thus far' - but I suspect that is not what you meant.

Right now the jury is out.  I tolerate Sprycel very well (no real side affects). Maybe a bit of dry mouth, some itching, but that can be from the dry winter weather for all I know.

I don't have the fatique or "fog" like I did with Gleevec - so Sprycel is better in that regard.

My concern is with myelosuppression.   Jury is out on that - so we'll see.

[rickpister]

Sorry. I need to do a better job of reading.  I looked at some of your numbers (platelets and WBC) and they looked pretty good.  My platelets got very low when I started it.  Hope things get better for you.

[hannibellemo]

Michael,

The myelosuppression has just never happened with me, even though it did on Gleevec. I finally stopped waiting for the other shoe to drop and accepted my "good luck".

Hope this is your experience, too.

Pat

BTW, your numbers after a week on Sprycel look pretty good to me. Yes, they are no longer in the pre-CML normal range, but then you are no longer pre-CML. That was my range for about a year (your platelets are higher than mine).

[scuba]

I am two weeks on Sprycel (70 mg.) and had a CBC done today ....

Looks like myelosuppression again (bummer).

WBC = 1.2 (down from 3.2)

ANC = 0.71 (down from 1.19)

Platelets = 120 (down from 270).

Interestingly my red blood (+ components) went up slightly (still normal range)

Sprycel is definitely affecting the Neutrophils just like the Gleevec did.  The Oncologist wants me stay with it for another week to see where it goes hoping for it to stabilize or even go up.  I am not confident that will happen.  My Neutrophil making cells do not like TKI's.

If my counts don't stabilize next week - they will take me off Sprycel in order to recover and then reduce my dosage to 50 mg.

Looks like this is going to be a problem for me.  Thoughts and prayers welcome.  This on again/ off again is what will cause this disease to progress.  So far no blasts, but I am increasingly concerned.

[rct]

I am sorry this is happening.  Neupogen and the TKI that works best for you is the answer to this particular problem.

rct

[CallMeLucky]

Sorry Michael, I know this is not what you were looking for with these results.  Only thing I can say is that I have read about people doing well on low dose Sprycel, the drug is pretty potent and maybe a lower dosage will be enough to keep CML at bay and still allow neutrophils to produce.

Best of luck - you are definitely in thoughts and prayers.....

[scuba]

Thanks Gary .... They took another blood draw (I prefer leeches) today to do another PCR.  The baseline PCR from two weeks ago was screwed up (tech sent it to the wrong lab!@!#)$ - He sent it for cytogenetics study instead of PCR).  So this PCR won't be truly comparable to the one I had while on Gleevec, but it may show after two weeks on Sprycel a reduction in bcr-abl.  I am hoping that the reduction is significant given Sprycel's reputation (potent).

In that case a dose reduction further may work (from 70mg. to 50mg).

I don't understand why the biochemistry of Sprycel affects neutrophils so specifically (in my case).

[Tedsey]

All my blood counts except my PLT started to go up at 3 months on Sprycel (my PLT got very low on Sprycel: 20-30 thousand).  Monday, my CBC was WBC 2.9 HGB 10.1 ANC 1.7  These are great numbers for me since I have been so low for the past year.  I hope to hear the same about your counts after 3 months.  My best wishes to you.  I got a drop in my PCR, but it was not all that dramatic from when I was on Gleevec.  Nevertheless, the sample taken for cytogenics came out "normal".  At my last BMB.  I wish the same on you!

Teds  

[scuba]

Thanks Tedsey ....

How low did your ANC get during those 3 months before they started to rise again?

[Marnie]

This is a helpful thread for me.  I have 3 days of Spryce (half dose, 50mg) under my belt. I am THRILLED with the lack of side effects so far.  Impatient for my first PCR, which is not for a couple of weeks. . .After reading Michael's posts, it will be interesting to see my CBC results on Friday.  I am getting anxious about only taking a half dose. . .I want to get going full-throttle.  On the other hand, if the half dose has made the transition painless, I'm glad I did it this way.  Just wish it was only for 2 days instead of 5.  I am NOT a patient person!!

Thanks, all, for the info on how you've been doing on Sprycel.  It's nice to have folks on the same med to compare notes with.

Marnie

[Tedsey]

At the time I started Sprycel, my WBC were starting to make a comeback.  I think the lowest I got was .4 or .5 on S.   The CBC before last was as high as I have ever been since TKIs.  I was ANC 1.9.  This Monday it was 1.7.  See, there is hope.  Keeping my fingers crossed for you.  I feel very good on Sprycel.

Teds

[hannibellemo]

Teds,

I'm thrilled for you, it's about time you got some good news with your counts. It's amazing isn't it, how these TKIs affect us differently?

Pat

[Tedsey]

Michael,

I am updating my response.  I was able to log on to my doctor's website to graph my ANC.  Well, it appears my ANC was rising anyway before Sprycel, but it is hard to tell what came first.  Anway, in the first 3 months starting Sprycel, my average ANC during that time was .7 (don't have all the data to tell you exact day it was the lowest).  Hope you are doing very well on the drug!

Teds

[Tedsey]

Dear Pat,

Thanks!  Sorry, another laaaate response!  Yes, it is really interesting how the TKIs effect all of us so differently.  I think it makes a good argument for genetic differences either in our personal make-up or the make-up of our disease (probably both, I presume).  It is kinda scary for me to think that the CML was so bad in me that I needed the strongest drug to fight it back.  However, this may not have been the case.  I think I may have an erroneous thought that those of us with a lesser leukemic burden tend to get to MMR or PCRU on Gleevec.  I am so grateful for Spycel.  My HGB, if didn't mention it before, was just 10.1!  Sure beats the late spring, summer, and early fall around .5, shots and transfusions!  I will never bemoan winter again!  I think there is not a season anywhere on earth that I can experience alive that I will ever complain about!  Hope you are doing well!

Teds