04/10/08 - Aranesp
This goes along with the previous "Quick Medical Update" post. Originally, it was part of that post, but I ended up breaking it out in case people don't want to read it, and it was turning out to not be so quick...
My right ear was ringing constantly, seemingly due to the shot of Aranesp I received on Monday 4/7. So I looked up the potential side effects of Aranesp (which is supposed to boost my RBCs). I referred to the drug fact sheet that I received (from Moffitt [hospital] by Aranesp's manufacturer, Amgen) when I got my first injection of Aranesp.
Aranesp printed fact sheet, click to enlarge
Well, ringing of the ears (tinnitus) wasn't on the fact sheet, so I went to the manufacturer's suggested website of www.aranesp.com. It didn't take me long to find a potentially very bad side effect that disturbed me - it seemed to be all over their website. The same side effect is not listed on the printed fact sheet that I have, nor was I ever told about it by my doctors... I've included some quotes below.
Aranesp website, PDF file
To make a long story short, chemotherapy is basically a drug that will hopefully minimize or eliminate your tumor (cancer). Most of the time, it also has bad effects on the rest of your body (for example, my low blood counts). A potential side effect of Aranesp is to make your tumor grow. Exact opposite of chemo. Another potential side effect is death. I don't know all the medical terminology, but there seems to be about a 5% chance of these effects. I don't like to bet, and I certainly don't like those odds.
Aranesp website, later in the same PDF file
The above studies show that a potential side effect of Aranesp is to shorten how long you live after you're done with chemotherapy. The average "shortening" of one's life was 339 days if you had a head or neck tumor. Well, I did Email my doctor's assistant, to say I had some "concerns." She replied back saying,"the benefits out-weighed the risk." I will certainly discuss it more thoroughly with my doctor when I meet with him on April 22nd.
Another item that was mentioned on my drug fact sheet was www.anemia.com. I thought I might be able to learn something there, and I briefly thought that at least Amgen (again, Aranesp's manufacturer) was providing patients more information on low red blood cells. Nope. Every link goes to a screen that says, "This section currently being updated. Please check back shortly." Well, it has said that for a week, could it be that a big drug manufacturer is lying?
I thought I might learn about anemia, oops!
You can do with this information what you want to. I have had four injections of Aranesp before I stumbled upon it. Hopefully, other patients will see it. Amgen should make this information MORE PUBLIC. I don't know, maybe right in their printed fact sheet? I don't think very highly of them. I also don't think that I will get another shot of Aranesp, if I can help it.
The ringing in my ear? It's still there. I can live with it. However, I can't say the same about Aranesp.
My right ear was ringing constantly, seemingly due to the shot of Aranesp I received on Monday 4/7. So I looked up the potential side effects of Aranesp (which is supposed to boost my RBCs). I referred to the drug fact sheet that I received (from Moffitt [hospital] by Aranesp's manufacturer, Amgen) when I got my first injection of Aranesp.
Well, ringing of the ears (tinnitus) wasn't on the fact sheet, so I went to the manufacturer's suggested website of www.aranesp.com. It didn't take me long to find a potentially very bad side effect that disturbed me - it seemed to be all over their website. The same side effect is not listed on the printed fact sheet that I have, nor was I ever told about it by my doctors... I've included some quotes below.
To make a long story short, chemotherapy is basically a drug that will hopefully minimize or eliminate your tumor (cancer). Most of the time, it also has bad effects on the rest of your body (for example, my low blood counts). A potential side effect of Aranesp is to make your tumor grow. Exact opposite of chemo. Another potential side effect is death. I don't know all the medical terminology, but there seems to be about a 5% chance of these effects. I don't like to bet, and I certainly don't like those odds.
The above studies show that a potential side effect of Aranesp is to shorten how long you live after you're done with chemotherapy. The average "shortening" of one's life was 339 days if you had a head or neck tumor. Well, I did Email my doctor's assistant, to say I had some "concerns." She replied back saying,"the benefits out-weighed the risk." I will certainly discuss it more thoroughly with my doctor when I meet with him on April 22nd.
Another item that was mentioned on my drug fact sheet was www.anemia.com. I thought I might be able to learn something there, and I briefly thought that at least Amgen (again, Aranesp's manufacturer) was providing patients more information on low red blood cells. Nope. Every link goes to a screen that says, "This section currently being updated. Please check back shortly." Well, it has said that for a week, could it be that a big drug manufacturer is lying?
You can do with this information what you want to. I have had four injections of Aranesp before I stumbled upon it. Hopefully, other patients will see it. Amgen should make this information MORE PUBLIC. I don't know, maybe right in their printed fact sheet? I don't think very highly of them. I also don't think that I will get another shot of Aranesp, if I can help it.
The ringing in my ear? It's still there. I can live with it. However, I can't say the same about Aranesp.
posted by Mark at 4/10/2008 08:46:00 AM
7 Comments:
Mark,
Goodness gracious!!!! Your reports are astounding and quite informational!! And your latest result finding is most disturbing, like you said. You are so right in "digging and researching" all of this and approach your physician without delay.
Sorry we've been so long in responding to all your updates....have read them all, but didn't always have time to respond. Things have been quite hectic for me at the business...and very stressful!
But know this, dear one, you are never forgotten in our prayer chain at church or us personally. All the family asks what I've read and to be sure to include their thoughts and prayers to you....
Keep up the good attitude, and your medical treatments, but at the same time keep up your guard in how they are doing it. You are in control here, my dear.
Much love to you and Laura....tell your Dad and Karen "hello" for us.
Mary & Bill Gregory
(and all the extended Gregory family members)
Mary,
Thanks for the response, I had noticed that you hadn't commented in a while. I'm glad you have been keeping up. I hope the business has calmed down or will do so soon. Tell everyone I said hello.
Thanks,
Mark
Wow! You would think that your doctor would share that potential side effect with you. I really am surprised, as they are normally so concerned about lawsuits.
I wonder if it is a zero sum game. Your tumor either grows a bunch, or nothing happens at all. Maybe there is something you can do to reduce any risk. Hopefully the doctor can shed some light.
Carson
Mark,
Yikes! That is scary. I know Doctors want to pretend they know everything but they can't. It is a shame this info was not shared with you prior to giving you the meds.
This should be your decision based on facts, not theirs!
Melvin
Carson,
My doctors should have told me, for sure. I'm scheduled to see them in a week, and I will definitely bring it up...
-Mark
Melvin,
The doctors are usually very thorough, keyword usually. There is a lot they don't know, so treatment can be a combination of what worked for others (standard), and since people react differently, some experimental deviations. I still wish I knew more about Aranesp from the beginning...
-Mark
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