12 replies to this topic

[BP3]

DX'd in April 2015 40 yr old Male

86% at DX

Tasigna BCR/ABL to 42% before stopping due to low platelets.

 

On to Sprycel 20mg ramping up to 100mg over a few months to see if blood levels would stay stable, and they did. Platelets are ~80-100.

 

Here are the BCR/ABL results on sprycel

12%  - Feb. 2015 - 1 week at 100 mg

2.81% - April 2015 - 100 mg

3.16 - July 2015 - 100 mg

3.36 - Sept 2015 - 100 mg

 

I am taking 2000 iu of Vit D as of a week ago, 1000 mg B12, Glucosamine (sp), chondrotion(sp), MSM for joints, and Zinc on occasion.

 

What are the next logical steps?

[Trey]

You do not need to do anything differently unless your PCR jumps up.  The last three results are statistically level.  You could just be in a mini-plateau somewhat early. 

[BP3]

Thanks Trey.  The doc is wanting to do a BMB to test for mutations. I will see him in a couple of weeks.  What should I be asking/requesting? 

[Trey]

A second BMB can be done during the first year of treatment if there is a reason to do so.  In your case it is a toss-up.  Probably not needed, but it won't hurt.  I mean....you know.  

 

Maybe your Onc wants to test for kinase mutations, but they are not found using a BMB.  That uses peripheral blood.  Marrow fluid can be used but that is a very invasive way to do it.

 

I would ask:

1) What is the purpose of the BMB?

2) Is a kinase mutation test being done?

3) Isn't it more likely I am just in a response mini-plateau? (That is my terminology so that may surprise him)

[BP3]

Thanks 

[Gail's]

Trey, I know you've probably mentioned it before. When is a plateau normally seen and does everyone get it? I may be in denial but I've responded quickly and very well to the treatment and honestly don't expect anything but good results each time I'm tested.

[Trey]

TKI response plateaus usually occur at about the 12 - 18 month point but there are variations.  Not everyone experiences them.  Tasigna seems to be the drug most likely to have plateaus.  The explanation would appear to be that the TKI drugs kill off the mid-tier progenitor leukemic cells fairly easily, then the higher level ones can be harder to kill and take longer.  This can result in a response curve which appears to stall out, although it is likely just a change in which leukemic cells are being killed off, since killing off the higher order leukemic cells can be a slower process.  Of course, the very highest level leukemic cells may not be killed off by the TKI drugs. 

[BP3]

Update - latest PCR added.  What now? wait to see if 140 MG sprycel is going to work?

Really bummed at the moment.

On 140 mg sprycel. Testing for mutations and monthly bcr-abl.

 

Here are the BCR/ABL results on sprycel

12%  - Feb. 2015 - 1 week at 100 mg

2.81% - April 2015 - 100 mg

3.16% - July 2015 - 100 mg

3.36% - Sept 2015 - 100 mg

5.7%  - Oct 2015 - 100 mg moved to 140, test again at end of month

[BP3]

latest PCR added....what now?

bummed for sure....

[Trey]

Not a big difference.  Of course you would prefer a drop.  But your slow ramp-up to current dosage may need more time to work.  Next month's PCR would be more telling about the trend. 

[BP3]

 

Here are the BCR/ABL results on sprycel

12%  - Feb. 2015 - 1 week at 100 mg

2.81% - April 2015 - 100 mg

3.16% - July 2015 - 100 mg

3.36% - Sept 2015 - 100 mg

5.7%  - Oct 2015 - 100 mg moved to 140, test again at end of month

2.8% - Nov 2015 no mention of mutations - 30 days of 140mg sprycel

[Trey]

That's better.  The increased dosage seems to help. 

 

How are the side effects on the 140mg Sprycel vs 100mg?

[BP3]

Not bad...I did not have many on 100 though.  Maybe that's why it didn't work at 100 very well?  I have more fatigue, gas and zits, I'll take it.