5 replies to this topic

[Zu-ko]

I was just wondering if anyone else has experienced the following. July 2010 diagnosised and put on 400mg of G. Taken off in Dec because WBC and PLT keep dropping. Put on Srycel in Feb for 1 month same thing happens. I was taken off Sprycell 3/3. I have been getting my blood drawn twice a week now.

My numbers have not really changed since being taken off. Today my #'s were: PLT 19 WBC 2.4 NEU 0.8 I go in next Wed for more blood test, if my numbers have not come up I am scheduled to have another bone marrow test on Thurs because he wants to make sure I am not in the next phase. That just doesn't seem right. Could it be that my dose was just to high for me and it will take a while for all my numbers to come back up?

p.s. Micheal, I am so sorry to report that the heavy french kissing has not made a diference in my NEU #. But it has made for one very happy husband!

Denise

[scuba]

Denise,

Fun trying - though eh?

I notice your counts are similar to mine.  I have been off Sprycel since January (going on 8 weeks).  No mention by the docs about CML progressing into the accelerated phase (which is the next phase after Chronic) where more blasts are present.  I would suspect that if that were the case - you would have a lower red blood cell count as well.  Do you have anemia?  Trey can probably weigh in better on this point.

[Zu-ko]

I don't think I have anemia, or least I have not been told. My RBC is 2.81. I am still trying to learn all the right things to ask. I am just grateful I found this website so I can learn more.

[Trey]

Zu-Ko,

You did not say what your counts were at diagnosis -- WBC, BMB, FISH, PCR.  Assuming you were diagnosed in "average" chronic phase, you should not be at risk for sudden disease advancement.  Most likely the 100mg Sprycel was too much drug for you.  It appears that although some do well on standard dosage, it can also be way too much for others.  My observation has been that this is especially true for women (and girly men like Michael) who may need partial dosage due to the impact on cell counts.  The knowledge base is still building for these drugs, but individualization of dosage is becoming an important issue, especially for Sprycel and Tasigna.

[Zu-ko]

Trey,

My WBC was 24 at diagnosis and my platelets were 560. As far as the BMB, FISH and PCR test go, I am embarrassed to admit that I don't know what these numbers are. I am sure my Dr went over that with me in the beginning but it went right over my head. All I chose to hear in the beginning was take a pill everyday and you should be able to live a normal life. I am finding out that there is a little more to it. I will be asking for a copy of those results when I go in next Wed.

Thanks!

[Trey]

It appears that you were diagnosed very early.  That is good.  That makes the Onc's statement about fear of disease advancement seem silly.

Here are some suggested questions for when you go for your appointment:

1) Was I diagnosed in early chronic phase?

2) Did my tests show any high risk factors?

3) What is the plan for my treatment near term to deal with my low blood counts: a) what about low dosage Sprycel, and when can I re-start? what is the lower limit for my white blood counts (neutrophil count) for stopping drug therapy? c) when would you consider using cell stimulation drugs (Neupogen)?

4) Explain FISH and PCR results to date.  Have I made good progress?

5) Need copies of all test reports