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Mom's experience with 2nd line treatment (amrubicin)


LauraC

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I haven't posted here in quite a while but thought I would share my mom's experience with amrubicin. (you can read in my profile below a description of her history).

Mom had a great response to carboplatin and etoposide the first round and was declared NED after 6 rounds. 8 weeks later with a PET, it was shown to have metastacized to liver. She enrolled in the trial involving amrubicin and you can only enroll in this trial if you have only had one prior chemo regimen. Much less nausea and diarrhea with amrubicin and she didn't require nearly as many platelets and only one transfusion as she did with the platin therapy. With the exception of the week after chemo, she was able to pretty much live a normal life. The amrubicin eradicated all the very small liver lesions and greatly reduced in size the three larger ones.

She caught a cold after her 6th treatment and was hospitalized with pneumonia. The dr kept saying, let's just wait and get you better....a few weeks won't matter. So, she waited. She waited 6 weeks and called about setting up her appt for amrubicin the following week. She was informed by the research nurse that she could no longer participate because she had gone past 6 weeks. If she had known that, she would have definitely gone in at 5 weeks. Very maddening. Her dr claimed he did not know there was a limit but who is to blame. There was nothing in the research study info that indicated a max amount of time. Very disappointing since there is no way to purchase the drug at all. And, of course this drug was showing a tremendous response.

Anyway, she was put on Topotecan and after two rounds it is growing again. So we are off to our next clinical trial involving Taxol and CBT-1. I will keep you posted on that.

The main point of this post is to encourage people to look into this clinical trial using amrubicin. It was far less toxic to the system than the platin drugs or topotecan. And it was working for her.

Laura

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Hi, Laura-

Thank you for the info on amrubicin.It sounds promising. And a Thank You to your Mom for her bravery in helping us all by furthering research which we all need so desperately. I also share your frustration over the trial rules. I would be furious! Hopefully, the new trial will deliver even better results. I hope your Mom continues to fight and prevail.

Best Wishes,

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Hi-you may want to talk to the Dr's about getting your Mom approved under the Compassionate Use Mechanism-I was told by Dr's @ Johns Hopkins-even if a trial is closed you could still get in it-I would definitely look into it since your Mom had such a good response from it.

Dar

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