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!
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
ReplyDeleteHey Jeff, you can consider that a bargain! In the US it is over $15,000 per month; fortunately, I have great insurance!
ReplyDeleteGlad that it is working for you; it seems to be doing the job for me, as well!
Keep up the good fight,
Michele
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
ReplyDeleteI suppose that is possible; maybe we get to a certain stage and we hurt! lol
ReplyDeleteBlessings,
Michele