6 replies to this topic

[JohnPaulJones]

Hi! Everyone. I was dx CML in 2009 and took Gleevec 400mg, but my body could not tolerate on high doses.  My doc changed to Sprycel 20-40mg on and off. Now, I am off med since April 13 (because PLT 50k) but my PLT still keeps decreasing 'til 25k today.

Finally, my result came up worse:

WBC-31.1, RBC-4.20, PLT-25, Neutrophils-10.6, Lymphocytes-5.29, MONOCYTES-4.04, Metamyelocytes-5.29, Myelocytes-4.04, Promyelocytes-1.56, Blasts-0.31, NRBC/100WBC-2.

Previous my onc, who always took action to instruct me depends on my lab results asap.   The latest onc doesn't do and  keeps advise me to have bmt w/o reviewing my medical summary.   My onc wants to discuss only phone visit rather than office visit even this result came up.

I feel very scare and totally white out my mind when I saw this result.

Please advise what I should do.   Thank you!/Jam

[Trey]

The WBC has certainly jumped up.  You need to stay on a drug at some dosage.  Since the main issue is the platelets, you should ask your Onc if you can get platelet transfusions when needed, and continue to take one of the drugs.  Maybe switch to Tasigna if you have not tried it.  Each person responds differently to the various drugs. 

[CallMeLucky]

And find a new doctor.  If your doctor is only willing to discuss things with you over the phone and only tells you you need to have a BMT, then you need to find a new doctor immediately, preferably one with extensive experience treating CML.

[JoshLee]

Hi,

    It's okay to be scared. The WBC is probably because you haven't been on any medicine lately. Our bodies are always trying to make more of this crap, so we have to keep suppressing it. Find a doctor that you can trust and go from there. Hopefully, seeing a specialist is an option since they have more experience playing around with different dosages for individuals. Good luck and know that we are here for you no matter what the status is.

[JohnPaulJones]

Thank you for the support and advise.

I talked w/my Onc today and had my latest BCR-ABL result.  It is 44.  I asked my Onc that I want to get PLT transfusions and take a drug.  She still doesn't recommend because of my PLT is not the point to get transfusions.  And, transfusions works only 1 day that is what she said unless I get transfusions everyday.

She recommends me BMT because according to her experience, the patients don't tolerate 2 kinds medication that case 3rd one also doesn't work, either.

I will visit another Onc next Tuesday.   I hope he is better for me.

BTW, I have referral to have 2nd opinion and process of HLA typing at Fred Hutchinson Cancer Research Center.

Thank you again!/ Jam

[Trey]

It seems that if your platelet count is good enough to avoid transfusions then it is good enough to take the drug.  And your Onc is wrong about the third drug working like the other two -- each drug is different for each person.  Those are two dumb things your Onc has told you.  Seeing another Onc is a very good idea. 

Tasigna might be better for you, and I would suggest starting at half dosage (maybe 300 or 400mg per day).  There are also drugs that can stimulate platelet production (such as Aranesp) that you should ask about.

Even if you do end up doing a BMT, the process takes a long time.  So you need to be on a drug in the meantime. 

Many have learned that they can do OK with low blood counts.  The counts may seem low to the doctors, but a person can often still function well with low counts.  Sometimes it is a choice between a BMT and living with low blood counts.