Hi Terry,

First let me say that it is not unusual to have bone pain while on these drugs. They are after all working in the bone marrow. I find that taking Ibuprofen to be an excellent way to almost completely get rid of the bone pain. I take about 400mg of Ibuprofen when I need it.

That being said, I would like to weigh in on the issue of PCR and clarify a few things:

There are five different types of white blood cells, 3 of which are granulocytes (neutrophils, eosinophiles and basophiles) 2 of which are leukocytes (lymphocytes and monocytes). Normally these white blood cells are in much less quantity than your red blood cells. But, the CML causes the WBC cells to reproduce at an accelerated rate and they do not perform as normal cells, meaning they do not die off as they are supposed to. So, they seriously crowd out your red blood cells and other cells. White blood cells have a nucleus - therefore they are the ones that have the DNA where the chromosomal abnormalities occur.

At diagnosis you may have about 10 to the 12th power of WBC's or 1000000000000 which by the way translates to about 100 on the international scale.

When you achieve a Complete Hematologic response, you may have from 10 to the 10th power to 10 to the 11th power - that is 10000000000 or 100000000000 which equates to 10 on the international scale

When you achieve Complete cytogenetic response (CCR) you may have between 10 to the 10th power or 10 to the 9th power or: 1000000000 or 1000000000. This equates to 1 and 0.1 on the international scale.

When you achieve a major molecular response (MMR) you may have between 9 to the 8th power and 10 to the 6th power of WBC's or 100000000 or 100000000. This equates to the range of 0.1 to 0.0001 on the International Scale.

When someone is said to be undetectable, they may still have from 10 to the 6th power and below of WBCs that are leukemic in their body - that is 1000000 and less, that is equal to below 0.0001 on the International Scale. It depends how sensitive the PCR testing equipment is.

Note that being undetectable doesn't really mean you have no WBC that are leukemic in your blood. It means that there are still probably some there but the level is low and they cannot always be detected.

Add in another factor, for instance, consider that when you go for your blood test that no one can predict exactly which blood cells are circulating near where you get your arm stuck for the blood draw. Consider that you have way less leukemic WBC circulating so the odds are significantly reduced, versus when you were diagnosed that the blood collection that is being harvested when you go for your blood test will have leukemic WBC's, if any at all.

This is why trend is so important. This is why it is always good to have the PCR repeated to see if the value is truly rising. However, your result of 0.00028 is still a great result!

You have only been diagnosed since November 2008. Give yourself more time.

With regards to the mutation, that is a mutation that typically responds well to Sprycel.

Please speak to your doctor about the bone pain. Bone pain does not mean the disease is progressing.

Please make sure that the bone pain does not interfere with taking the drug. If it is, tell your doctor immediately.

I hope some of this helps.

Please keep us posted.


Best Regards,
Cheryl-Anne