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Parent of 19 year old with CML looking for input

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Hello All, 

Three months ago, my 19 year old son was diagnosed with CML in the chronic stage. Of all the sources of information I've found, this support group has provided me with the most comfort and clearest information. I'm hoping you can provide a nervous mom with some insight.

After diagnosis, my son was started on Hydrea until we were able to meet with his oncologist a couple of weeks later. At that time, he was put on 100mg of Dasatinib. Due to a liver enzyme increase, (Alkaline phosphatase ALP) he stopped taking the Dasatinib about 3 weeks ago to see if that would bring the enzyme down. It has been decreasing slowly, but remains quite high. He is now scheduled for an ultrasound to check his liver, and he will be switching medications in the next week, though we don't know which one he will be put on yet. His last blood work showed his platelets and hemoglobin now squarely in the normal range, and his WBC has risen slightly to 12 after being in the normal range for the previous 3-4 weeks. He had a BCR ABL test done last week, but we won't know the results until we meet again with his oncologist in early August. 

How nervous should I be about this development? I know that we are in very early days, and I have seen a number of people comment about spikes in liver enzymes early on. However, I've not seen much talk about ALP specifically. 

We've been told that our son's prognosis is good, and the logical side of my brain knows that this is still very early in the process, there are multiple drugs to try, and that the next 12-18 months is about finding what works for him. The emotional side of my brain is admittedly trying really hard not to freak out. As a parent, the emotional rollercoaster is excruciating. 

Any insight would be greatly appreciated.

Thank you.

 

It is just as you have said there can be increases in liver enzymes.  When it has happened to me in the past we wait to the next test (3 months) to see if it is of concern.  It has both gone up, and down slightly after being flagged only to come down again.  I suppose it depends on how high the numbers.  There are a lot of forum discussions about low dose Dasatinib (50mg to even 20mg) while seeing great (and at times better than with 100mg) results.  

We are all very different as far as response and what triggers things in our bodies but the important thing is to get back on TKI as soon as possible and monitor BCR-ABL IS % to verify that it is in fact working for your son.  If it has come down already from diagnosis that would be a great sign.  Hang in there as it sometimes takes a few different adjustments to get things dialed in.  I switched from Dasatinib to Nilotinib after about two years and have had better results (5 years next month).

Thank you so much for your response.

Since my last post, my son has had an ultrasound on his liver and pancreas, a few other blood tests and switched to Imatinib. The ultrasound came back clear. His liver and pancreas appear to be fine, and his spleen has returned to normal size. He has now been on Imatinib for about 3 weeks. After being in a slow but steady decline, his ALP showed an increase in his latest blood test. It is now around 260. His WBC and hemoglobin are in normal ranges, and his platelets have seen a bit of a drop and are below normal. I'm not as worried about the platelet count, as I assume that they will bounce back over time as his WBC has returned to normal. I am concerned about the increase in ALP numbers. My assumption is that this is a reaction to the drug, and as others have talked about, a transitory increase that will hopefully resolve itself over time. I am concerned about liver damage and what this means in terms of tolerance to the drugs. I know that one test does not make a trend, so am hopeful that this is just a bump. I wonder what affect diet has on liver function tests, and if there is anything he could be doing to help mitigate these numbers? Teenage boys don't necessarily make the best food choices, though to his credit, he has avoided all alcohol. 

I had so hoped that he had turned a corner with the ALP numbers declining, so I admit I am very anxious about this latest development.

Maybe if the pcr value decreases ask if dose reduction is possible,maybe that will solve the issue.
It must be hard for your son during teen years to deal with this especially when friends are going out for drinks etc.kudos to him.