I'm so mad... finally I'm MAD. Not something we bargained for when we got into this. When I read the blue bar of this blog that says that what Amaey initially had was the best kind of cancer I could have shopped for... it seems like a sick joke. Feel somebody has been incompetent... is it the doctors, the protocol makers, the drugs, or god himself.
I just had a consult with one of Amaey's docs and we were going over the next phase of possible treatments based on what comes out from his day 22 results. When he mentioned giving Amaey Etoposide again, I really flipped. I think my calm left the doorway and the mad mom came in me. Wasn't this drug the cause of his secondary relapse? So how come you are willing to give it to him again? There is no plan B?
I'm told that they are not worried because their goal is to completely wipe out his marrow with chemo, radiation, and more chemo so when he gets a stem cell transplant there should be no problem. BUT he is in the 3% people to get this kind of relapse. This is RARE. And I have heard that a person can relapse even after a transplant so how can you tell me with a straight face that that won't happen to Amaey. This drug might be fine for some patients but it is clearly not for Amaey so why are you blindly following the protocol and not looking for an alternative?
All of this sucks... I hate not being in control of all these decisions. I hate feeling so helpless. We don't understand the meds that well so we have to follow the trials and the paths they have tried but what happens when the paths they have taken have not always proved to be successful?
I just had a consult with one of Amaey's docs and we were going over the next phase of possible treatments based on what comes out from his day 22 results. When he mentioned giving Amaey Etoposide again, I really flipped. I think my calm left the doorway and the mad mom came in me. Wasn't this drug the cause of his secondary relapse? So how come you are willing to give it to him again? There is no plan B?
I'm told that they are not worried because their goal is to completely wipe out his marrow with chemo, radiation, and more chemo so when he gets a stem cell transplant there should be no problem. BUT he is in the 3% people to get this kind of relapse. This is RARE. And I have heard that a person can relapse even after a transplant so how can you tell me with a straight face that that won't happen to Amaey. This drug might be fine for some patients but it is clearly not for Amaey so why are you blindly following the protocol and not looking for an alternative?
All of this sucks... I hate not being in control of all these decisions. I hate feeling so helpless. We don't understand the meds that well so we have to follow the trials and the paths they have tried but what happens when the paths they have taken have not always proved to be successful?
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