HER2 Support Group Forums - View Single Post - Please post your two cents on Herceptin "side effects" real or perceived!

JustwannaBE · 06-25-2008, 04:18 PM

Hmmm... I have never posted to this website, but have been reading it since I was diagnosed in May, 2007. I am ER/PR neg, HER2 +. In May, 2007, I had a left breast lumpectomy. Sentinel node biopsy neg. Mammosite done in June 2xday for 5 days.
All is great..Stage 1. Not so fast, pet scan in late June showed mammary gland and supraclavical lymph nodes with cancer. July had port installed. August had mammary gland and supraclivical lymph nodes removed. Started A/C in September 1x3wks for 4 doses. November I started Taxol and Herceptin. With exception to the bone pain of taxol that lasted a week each time (1x3wks for 4 doses), I was in heaven because I almost felt human again on this new treatment. In January 2008 I started Herceptin alone and noticed my hands would swell and my eyelids were constantly swollen, also I seemed to sneeze alot the night of my treatment. Had onc quit giving me the steroids with herceptin and those problems disappeared, but now I find that I have what I refer to as myalga, as I ache all over for a couple of weeks after treatment. I only seem to notice it at night, as I must be too busy during the day working and stuff to notice.. Told my onc and told him I wanted more vicodin, so when I feel achy, I pop a vicodin and it goes away. I also think I have mouse hair growing on me..he he (you know that herceptin is made from the protein of the spleen of mice, don't ya?). Compared to what I am reading, I feel really lucky. Before I started the A/C my lvef level was 75%, after A/C it dropped to 64% and has remained there, as I get it tested every three months. I am kinda worried tho, because in April they found a lesion on my liver and I had a liver resection done to remove it - chevron style - talk about pain.. So, my question to the onc was, if the lesion on the liver didn't show in my June, 07 scan, then how did it grow to at least 1/2 inch between June of 2007 and April of 2008, when I had all that chemo and herceptin...dah... so now I am going to not only be on herceptin, but now tykerb and avastin. I just hope I don't have any problems with that, but after reading some of ya'll on tykerb, I am afraid of getting 'the rash'. My onc says that tykerb will probably cause high blood pressure, which I have low blood pressure now, so I am not thrilled about that. I start tykerb Friday (June 27th), the day after my colonoscopy, so I will know what affects tykerb has without having it at the same time as herceptin. Avastin won't be started for another 4 weeks.

So, I guess I rambled, but in a nutshell, on
Herceptin w/steroid I had hand and eyelid swelling, sneezing only the night of treatment.
Herceptin alone - achyness - myalga (which if you read the side effects of herceptin, that is listed), for which I pop a vicodin - only at night.

06-25-2008, 04:18 PM	#397
JustwannaBE Member Join Date: Jan 2008 Posts: 16	Hmmm... I have never posted to this website, but have been reading it since I was diagnosed in May, 2007. I am ER/PR neg, HER2 +. In May, 2007, I had a left breast lumpectomy. Sentinel node biopsy neg. Mammosite done in June 2xday for 5 days. All is great..Stage 1. Not so fast, pet scan in late June showed mammary gland and supraclavical lymph nodes with cancer. July had port installed. August had mammary gland and supraclivical lymph nodes removed. Started A/C in September 1x3wks for 4 doses. November I started Taxol and Herceptin. With exception to the bone pain of taxol that lasted a week each time (1x3wks for 4 doses), I was in heaven because I almost felt human again on this new treatment. In January 2008 I started Herceptin alone and noticed my hands would swell and my eyelids were constantly swollen, also I seemed to sneeze alot the night of my treatment. Had onc quit giving me the steroids with herceptin and those problems disappeared, but now I find that I have what I refer to as myalga, as I ache all over for a couple of weeks after treatment. I only seem to notice it at night, as I must be too busy during the day working and stuff to notice.. Told my onc and told him I wanted more vicodin, so when I feel achy, I pop a vicodin and it goes away. I also think I have mouse hair growing on me..he he (you know that herceptin is made from the protein of the spleen of mice, don't ya?). Compared to what I am reading, I feel really lucky. Before I started the A/C my lvef level was 75%, after A/C it dropped to 64% and has remained there, as I get it tested every three months. I am kinda worried tho, because in April they found a lesion on my liver and I had a liver resection done to remove it - chevron style - talk about pain.. So, my question to the onc was, if the lesion on the liver didn't show in my June, 07 scan, then how did it grow to at least 1/2 inch between June of 2007 and April of 2008, when I had all that chemo and herceptin...dah... so now I am going to not only be on herceptin, but now tykerb and avastin. I just hope I don't have any problems with that, but after reading some of ya'll on tykerb, I am afraid of getting 'the rash'. My onc says that tykerb will probably cause high blood pressure, which I have low blood pressure now, so I am not thrilled about that. I start tykerb Friday (June 27th), the day after my colonoscopy, so I will know what affects tykerb has without having it at the same time as herceptin. Avastin won't be started for another 4 weeks. So, I guess I rambled, but in a nutshell, on Herceptin w/steroid I had hand and eyelid swelling, sneezing only the night of treatment. Herceptin alone - achyness - myalga (which if you read the side effects of herceptin, that is listed), for which I pop a vicodin - only at night.