Mother is really struggling...
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This is a hard message to write, I've been a lurker for some time but have never posted.
A quick history on my mother. She was diagnosed in 2004 (age 44) with acute lymphoblastic leukemia. She went into remission fairly quickly, the treatment was hardcore for six months and she really took a beating. Went on maintenance therapy only to then be diagnosed with a small Stage 1 breast cancer. She had a lumpectomy and radiation, then was on Tamoxifen for five years and was deemed cancer-free. Finally started getting her life back and came off the Tamoxifen, as is standard, only to be diagnosed the following year (2015) with Stage IV breast cancer that had moved to her liver. Her doctor said he's never seen such a case before where a small stage 1 breast cancer morphs into what it is now. How does that even happen?
Hers was hormone-receptor positive so she was put on Femara and Ibrance, which was working, but the Ibrance gave her terrible mouth sores and she taken off. Once the hormone treatment ceased working, she had a port put in and was given IV chemo in the form of Abraxane starting in September (terrible side effects). Her counts dropped almost immediately, but have risen since then and she was taken off it last month in favor of Doxil. She's only had two treatments so far and the first one, she almost died. They administered it veeeeerrry slowly and she got through it, but it was touch and go with the reaction she had (Code Yellow). The second treatment was only marginally better, but at least this time, she could hear everything going on around her. They're hoping but giving it to her in an even smaller dose next week that we might be able to avoid another horrible reaction, but I fear we're at the point where her body has just been through too much over the years with all the chemp. We were told Abraxane and Doxil are generally well-tolerated as compared to many of the other drugs, but it's been the exact opposite in her case. Now, there's a unpleasant new wrinkle -- ever since she started the Doxil, her stomach is distended and she's gained 10 pounds despite hardly being able to eat anything. They did a scan and they ruled out anything on the colon, they seem to think it's just air. I don't think she could go through more than another cycle or two of the Doxil, especially if it doesn't look like it's working.
She's so weak and light-headed now, not really being able to eat or drink, she's in pain and there's seemingly no relief in sight. Her doctor says her liver function is actually good, but 50% of her liver is full of cancer mets at this point. I'm not sure what comes next after the Doxil. We were told there *are* other drugs, but they're nowhere near as effective. I'm not even really sure what I'm asking, or maybe I'm just venting. I'd like to think there are other viable options here, or to hear if anyone else has had any of these effects, particularly the air in the stomach that makes one's belly protrude. Happy to answer any other questions, or just hear what others here have to say about it.
Jason
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Hi Jason,
We're so sorry to hear about your mom, and everything you are all going through. It can certainly be difficult to watch a loved one endure this, but you've come to the right place for support and to hopefully get some answers from others here.
You may also be interested in sharing your story on the For Family & Caregivers of Loved Ones with Stage IV Diagnosis forum where you can meet others who are experiencing or have experienced what you're going through.
We hope this helps and we hope your mom finds relief soon. We're all thinking of you both!
--The Mods
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Jason,
There are other drugs! What you need is a second opinion. I am on Doxil, and have gotten ulcerative colitis from it, and it sounds like your mother has, as well. I can manage mine, but your Mom might need to be pulled off of the drug.
Please get a second opinion ASAP. I'm not a doctor, but she sounds like a great candidate for Halaven.
Jennifer
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