I was diagnosed with Leukemia (CML) almost three years ago. When I was diagnosed, I knew nothing about blood cancers at all. I have since educated myself and am constantly reading and researching everything and anything that I can find.
I am also connecting with others, whom also have CML; mostly through Facebook and Yahoo groups. When I first joined these groups, it seemed as though the greatest complaints were nausea, bumpy irritated skin, brain fog and fatigue; the fatigue seemed to be the most life altering challenge of the bunch. Of course there were others side effects as well, but those seem to be the “biggies”.
Today it seems as though pain is the number one complaint; musculoskeletal pain, muscle spasms and peripheral neuropathy (nerve pain) seem to be running rampant in the circles, in which I am swimming. I have tried to find a common denominator, other than CML, but because we all were diagnosed at different times and are all at different stages of our treatment, the only common denominator that I can see is the medication that we are taking.
That medication is Sprycel, also known as Dasatinib. This is not to say that Tasigna and Gleevec users are not experiencing the same thing, it’s just that I have mostly been talking to Sprycel users. So, what is going on?
Is it just that after a certain period of time we are all destined to experience pain while taking this drug?
Is it just another side effect that will eventually show up if given time?
Or have the manufacturers started to use a different substance when making this medication?
Are there “good” and “bad” batches?
Are some lots made with generic or substandard ingredients?
I am sure that we will never know the answers to these questions, but one thing I do know is that when I bake, I often find that my end product is not exactly the same as the one before; this is despite following the instructions to a “T”. I know that even though I am using all of the same ingredients my cookies, cakes, breads and pies often taste differently that the time before. This is not to say that they are not “good”; it is just that they are different.
I am sure that this is because the eggs that I used are not “exactly” the same; they have come from a different chicken, which had a different diet, than the previous chicken; and the same goes for the cream, the butter and the flour.
So, is it possible that we have just run into a “bad” batch of Sprycel? Or, is it possible that they have changed something in their production and this is the newer, better, cheaper version? Do the manufacturers even know that we are all suffering? Do our oncologists report this information, or do they simply shrug off our pain attributing it to something else?
Inquiring minds want to know!