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Acute Myeloid Leukemia questions about treatment & survival
Blood Cancers & Disorders | Last Active: 10 hours ago | Replies (23)Comment receiving replies
@loribmt
I can understand receiving Pegfilgrastim if it worked , My counts just kept dropping and dropping after my cycle of 28 days and then delayed for another 2 weeks. Finally given
Neupogen injection. In my opinion 23 platelets is way too low to start a cycle.
To have your cycle delayed because your doctor will not give you a Neupogen injection is outrageous.
My treatment is very expensive, Neupogen injections should be given as needed, more expensive than Pegfilgrastim.
My new chemo was decided by my out of state doctor, I was not receiving this treatment before I went out of state. I am getting up to date medical care now only because I went of of state for my treatment. My doctor here has to follow protocol I don't believe he is when it come to my blood counts.
Replies to "@loribmt I can understand receiving Pegfilgrastim if it worked , My counts just kept dropping and..."
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Hi @sheridan2026 I just feel so sad about the lack of response you’re getting from your local oncology team. It shouldn’t be this way! Your health, your opinions, your input should matter! Do you have an insurance liaison person that you work with for your cancer care?
I had one from my insurance company. Initially I was a little hesitant to trust this person wondering whose side she was on…I can be rather cynical. But she turned out to be an ally when it came to getting approval for drugs that were initially not approved, that type of thing. I wonder if that might be helpful for you?
You’ve mentioned having out of state treatment that was magnitudes above the care you’re receiving now. I do appreciate that this would be costly and the logics can be considerable. But there seemed to be a lack of frustration, a trust in your doctor and a level of hope associated with your previous treatment that is sorely lacking now.
Is it possible to return to your previous doctor for continued care? Or, another thought, would it be possible to contact the out of state doctor/team you had and have them write a narrative discussing the treatment that was so successful for you there. Noting that it would be in your best interest to be able to continue with the same protocol you were on at that time? It’s ok to be the squeaky wheel!