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Nancy L · 08-08-2013, 02:47 PM

Kathy,

I have had 14 does at 3.6. I haven't felt good right frm the start and have had all the symptoms they talk about-- fatigue, weight loss, constipation, itching/rash, nausea, vomiting, anemia. Severe Joint and muscle pain. For the past couple of months I have really felt lousy and didn't recover between cycles--stayed in bed a lot and had to give in and take some pain meds which I have never done. I asked my onc to lower the dose and he said no. He said the drug is working and the tumor is shrinking. i decided i couldn't live this way so i went to the web and printed off the Kadcycla dosing and administration guide from Genentech. Based on this, I charted my lab test results. My total bilirubin started at .4 and has climbed to 2.5. Per Genentech, if total bilirubin goes above 1.5, the drug should be withheld until it is below 1.5. So I am on a break right now and when I go back on it, I am going to tell him I want to be reduced to 3.0 and see if that helps. My onc continues to say I shouldn't feel this lousy because of the liver function results. I have been fighting BC for 9 years and this has been the worst drug yet but I have few option so I am going to try and find a dose that both works and I can tolerate.

Just curious--are you NED at this point and where are your mets?

08-08-2013, 02:47 PM	#9
Nancy L Senior Member Join Date: Apr 2009 Location: La Quinta, Ca Posts: 253	Re: metronomic chemo Kathy, I have had 14 does at 3.6. I haven't felt good right frm the start and have had all the symptoms they talk about-- fatigue, weight loss, constipation, itching/rash, nausea, vomiting, anemia. Severe Joint and muscle pain. For the past couple of months I have really felt lousy and didn't recover between cycles--stayed in bed a lot and had to give in and take some pain meds which I have never done. I asked my onc to lower the dose and he said no. He said the drug is working and the tumor is shrinking. i decided i couldn't live this way so i went to the web and printed off the Kadcycla dosing and administration guide from Genentech. Based on this, I charted my lab test results. My total bilirubin started at .4 and has climbed to 2.5. Per Genentech, if total bilirubin goes above 1.5, the drug should be withheld until it is below 1.5. So I am on a break right now and when I go back on it, I am going to tell him I want to be reduced to 3.0 and see if that helps. My onc continues to say I shouldn't feel this lousy because of the liver function results. I have been fighting BC for 9 years and this has been the worst drug yet but I have few option so I am going to try and find a dose that both works and I can tolerate. Just curious--are you NED at this point and where are your mets?