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AlaskaAngel · 08-29-2008, 08:30 PM

So many things...

Pink Girl is right about weight gain. I would have given very serious consideration to refusing the use of steroids with chemo because they can be a reason for weight gain, and for the first time in my life I gained 28 pounds with treatment. I've seen a number of posts by people who did refuse it and got through it just fine without it. (But I am not sure that would apply to the taxanes.) I would have exercised... if I could have, that is... like Christine MH-UK, I spent 6 treatments of CAF going between being too sick to exercise, or else at work as someone who is self-employed. Losing weight is not the same as it was prior to treatment, and that is a huge understatement.

I had the first treatment without a port and immediately requested one, as my livelihood depended so heavily upon having to use my arms and hands. I've still got it, since I never had trastuzumab (yet) and have draws anyway every 4 months for the CA-125 to watch for ovarian cancer.

Since I was diagnosed as stage I before Herceptin was considered a success I don't know that I would have tried to get it -- but were I diagnosed now, knowing the down side of CAF and tamoxifen, I would refuse chemo and find an onc willing to provide trastuzumab to me without chemo.

And Jean's post really rang true for me. Don't assume the docs know more than you do. I have learned that even the best docs I have had truly did not, over and over. I sympathize, Jean, because even though I too inquired, my onc failed to tell me about relevant clinical trials also.

I think the biggest difference for me would be that I would put a LOT more weight on the importance of evaluating the treatments, and much less confidence in the personality of the medical provider.

AlaskaAngel

08-29-2008, 08:30 PM	#22
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Lots of things! So many things... Pink Girl is right about weight gain. I would have given very serious consideration to refusing the use of steroids with chemo because they can be a reason for weight gain, and for the first time in my life I gained 28 pounds with treatment. I've seen a number of posts by people who did refuse it and got through it just fine without it. (But I am not sure that would apply to the taxanes.) I would have exercised... if I could have, that is... like Christine MH-UK, I spent 6 treatments of CAF going between being too sick to exercise, or else at work as someone who is self-employed. Losing weight is not the same as it was prior to treatment, and that is a huge understatement. I had the first treatment without a port and immediately requested one, as my livelihood depended so heavily upon having to use my arms and hands. I've still got it, since I never had trastuzumab (yet) and have draws anyway every 4 months for the CA-125 to watch for ovarian cancer. Since I was diagnosed as stage I before Herceptin was considered a success I don't know that I would have tried to get it -- but were I diagnosed now, knowing the down side of CAF and tamoxifen, I would refuse chemo and find an onc willing to provide trastuzumab to me without chemo. And Jean's post really rang true for me. Don't assume the docs know more than you do. I have learned that even the best docs I have had truly did not, over and over. I sympathize, Jean, because even though I too inquired, my onc failed to tell me about relevant clinical trials also. I think the biggest difference for me would be that I would put a LOT more weight on the importance of evaluating the treatments, and much less confidence in the personality of the medical provider. AlaskaAngel