8 replies to this topic

[jbinsd]

Hi there,

I recently moved from 100 MG of Sprycel to 70 MG, but it looks like my white blood cell counts are dropping again.  My expectation is that if this happens, I will move to 50 and then to 25 if it keeps happening.  I'm having trouble finding information about how common this is.  All I can find is that about 24% of people have some sort of myeloid suppression on Sprycel, but I can't find any data on the following:

• Of those 24%, how many find that 70 MG, 50 MG, or 20 MG work for them?
• My doctor mentioned that if I'm experiencing myeloid suppression, then the chances are that I'll have similar reactions to other TKIs (although he said, in the unlikely event it came to that, then we would probably try another one before considering something more drastic like a BMT).  Has anyone in the group heard something similar?

I'm trying to give myself a realistic look at what my future looks like in relation to these drugs, but I'm having a hard time finding good data.

Anyone know where some good stats are on this?  Or have their own experience that might help?

- JB

[rct]

My Mrs has been neutropenic, without explanation or warning, since 2008.  She has been PCRu since earlier that year, about three months before the neutropenia began.  She has always taken 400mg of Gleevec.  She needed neulasta when she first started Gleevec in 2006, but her counts got up to reasonable levels and stayed there for over two years.

So we are at her 5th year of low white counts, and reds and hemo right on the line of what is called normal.  We are about to change doctors again.  She is going to ask to reduce her Gleevec again, and will probably be told no again.  So we'll try to find doctor(s) that will possibly try some new things, new ideas, new ways to do it.

It is hard to get information.  Officially, myeloid suppression is not a side effect, and unofficially, they don't want it listed as a side effect.  The only treatment for low neutrophils is neupogen, which chronic hepatics use to keep their counts up, and patients take prior to chemo to keep their counts up.  Neupogen is not to be used in leukemics, but there it is, it is all that works to get the counts back up.  And it works well, but it is brutal, a hard drug for many to take.

If it is any help to you, Dr. Druker out in Oregon saw my Mrs in 2010 and was fine with her using Gleevec daily and neupogen monthly for the rest of her life, he saw no problem with that.  We are at about 5 weeks between shots now, it is taking that long for her ANC to get below 500(.5).  For the most part, most oncs don't want to change a drug that keeps a person at PCRu, they find that more important than anything.  We could argue about that forever, but that's what they think they are bound to do.

Good luck with it and hopefully it will pass.

rct

[CallMeLucky]

This is common and there are many on this board who have dealt with it.  I'm sure Tedsey and Scuba will both chime in if they see your post.  Tedsey went the stim shot route.  Eventually I believe her counts came up to low normal and I don't think she is taking the stim shots anymore.  Scuba went the low dose route, all the way down to 20mg and he is also at the low normal range.  Both are on Sprycel.  You need a doctor who can work with you on this, there are ways to deal with it.  Do your homework and get other opinions if needed.  Do not let someone tell you to get a BMT unless it is the last resort and you have exhausted all other options.  The idea that you would get a BMT before trying other drugs because your doctor doesn't think they would likely make a difference is insane.  You try every drug at every dose until you find one that works.

You did not mention what your disease status is.  What phase?  What was your last FISH/PCR results?  If disease is stable you have time and options.  If your disease is not stable then you may be forced to consider BMT sooner, but again that should be last option.

[jbinsd]

Thanks for the early responses - very helpful and much appreciated.  Hopefully Scuba and Tedsey might chime in too.

I was diagnosed in April in the chronic phase, so the leukemia is still on the run.  My last PCR test is now down around .056 (down from .726 in April), my last FISH in July was 12% (down from 94.5% in July) so I've had a great response. And my guess is that I have plenty of time...even though I'm not yet stable.

Don't worry, my doctor hasn't told me I have to get a BMT.  Furthermore, I have zero desire to have one either.  So I'm trying to get a sense of what options are out there, however, the problem is that in trying to do my homework, I can't find any data out there so I at least have some idea what to expect, likelihoods of certain outcomes, etc.  I do wonder how often people who have neutropenia even at low doses find success with other drugs.  So right now I'm in a bit of a void until I see my doctor next month at least. 

[CallMeLucky]

You're still early on and during the first year or so your body is going through a lot.  In an attempt to balance out the runaway cancer cells your bone marrow will slow down production of healthy cells.  When you rapidly kill off the cancer cells it takes the body time to ramp up production again.  For some this happens quicker and for others it can take longer.  In some cases it never comes back to normal.  For some the drugs impair the body's ability to produce normal cells.  Those are the ones that have it the toughest and the Dr/drug companies don't know why that happens.  So you need time to see if things will correct themselves.  Sometimes you remedy that with STIM shots, sometimes lower dosage can help.  In other cases a switch to another drug could help. 

So you have options.

BTW - what are your blood counts with differentials?  What is your ANC?

[jbinsd]

I'm waiting on my most recent blood tests to come back, but I've only been on 70MG for two weeks now.  The day I started on 70 MG my ANC was at 1.6 (after jumping from .7 the week before when I wasn't on medication).  The week after I started, it basically didn't move (1.5).  I'm expecting that my blood test on Friday will show it starting to go down again.  I could be wrong, but I doubt it.

Good to know that sometimes it's just a matter of time although I can' say that I love the idea of STIM shots (that's nupegen right?) while trying to get there.  Much better than the alternative though.

-jb

[lopez.troop]

Just curious on the outcome jbinsd? How is everything going with the Sprycel? Did you end up with a lower dose or the STIM shots. Details appreciated as I am experiencing the same predicament at the moment. Thanks

[reedgirl]

My husband couldn't take Gleevec because of drug intolerance, blood counts dropped too low.  He was switched to Tasigna where he also had blood counts drop too low as well as a huge increase in his liver functions tests.  He was taken off both these drugs for a break and put back on lower dosage and still had same results.  He was put on Sprycel 50 mg, had good response then upped to 70 mg where he has been for 3 years.  His last PCR test came back undetectable.  It took 8 months to find him a drug he could take without severe complications to his blood counts.  Hang in there, give the Sprycel a try, hope it works well for you.

[lopez.troop]

Thank you to everyone for the feedback. I am still new to all this as I was just diagnosed last month on 3/26/2014 in chronic phase CML. Previously I tried taking the 100 mg Sprycel daily and then every other day and I still developed cytopenia. I saw my hem/onc Friday (4/26) after being off of 100 mg Sprycel for 10 days due to low counts, or as my doc calls it cytopenia. .

So, after ten days off my counts this week were WBC 2.1, HGB 10.3, ANC 1.0, Platelets 134 which is not a big step up from before the break but my platelets and hemoglobin levels came up a bit although they are still on the low end range.

Here is my concern. My onc wants to start me at 20 mg Sprycel this week because he has advised me that I am overly  sensitive to the required 100 mg and even 50 mg so 20 mg seems like the best option right now. He also said that any type of shots of Nupogen to treat the nutropenia and boost white cell production would be out of the question considering I have CML and any type of  boost of white blood cells is risky. Here are my questions:

1. Should I start the 20 mg this week even though my counts are so low already? Or should I ask my doc if we should hold off another week?

2. Has anybody had experience with this type of issue or have experience taking  a low dose of  20 mg Sprycel?

3.Will a lower dose of Sprycel (20 mg ) lead to disease progression or me not reaching my treatment milestones?

Any feedback is appreciated. Thanks, Jerry