Thursday, January 30, 2014

Has Something Changed in Sprycel’s Production?

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!

4 comments:

  1. I've had CML for 11 years, basically started out with Gleevec which had a great deal of side effects, diarrhea, nausea, vomiting, fatigue. When I switched to Syprcel about 5 years ago all of those side effects are gone out the window except for a little fatigue. I always feel like I'm at 80%. My counts are up and down but consistent enough to keep my doctor happy - in other words so far it's worked pretty well for me. My best guess about the medication is that it's pretty consistent and considering it only costs probably pennies to produce they would continue on that same type of manufacturing (but we will never ever know because of potential lawsuits). What does the medication cost where you come from? For me if I had to pay 100% it would be $5531CND for a month's supply. Jeff

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  2. Hey Jeff, you can consider that a bargain! In the US it is over $15,000 per month; fortunately, I have great insurance!
    Glad that it is working for you; it seems to be doing the job for me, as well!
    Keep up the good fight,
    Michele

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  3. I too have had a pretty good experience with this drug. I have been on it for almost 4 years. I will admit that over the last little bit I have noticed a little more pain. I have had heel pain pretty bad. Plus severe itching episodes of both feet. So maybe something has changed or maybe this is CML fighter's new normal

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  4. I suppose that is possible; maybe we get to a certain stage and we hurt! lol
    Blessings,
    Michele

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Bricks for the Brave!!