End of Herceptin

tulip66

Hi everyone - I was wondering if there was anyone else out there who was on the A/C then 12 week Taxol/Herceptin trial and has finished with it? I am going to be stopping the Herceptin this summer and wanted to know how you felt after it ended? Sometimes I get nervous and just want to keep on taking the Herceptin even though my Onc. doesn't feel there is any added benefit to me continuing. They just don't know the long term effects of this drug after 10 years. I guess the safety feeling of taking the drug is also making me consider taking it longer. Anyone else felt this way? Thanks! Ruth

SusanAnne

The last week of July will be my final herceptin treatment. I also think it's something that I need to continue taking for preventitive purposes, but I guess for stage 3, which I am, it hasn't been proven effective yet. I guess that is partly the reason for the trial I'm in. Anyway, I do feel like I'll be up the creek without a paddle when it ends. Like you, I would be interested in hearing from others who have completed their year to see how they're feeling and doing.
Susan

hummingbyrd

SusanAnne said:

The last week of July will be my final herceptin treatment. I also think it's something that I need to continue taking for preventitive purposes, but I guess for stage 3, which I am, it hasn't been proven effective yet. I guess that is partly the reason for the trial I'm in. Anyway, I do feel like I'll be up the creek without a paddle when it ends. Like you, I would be interested in hearing from others who have completed their year to see how they're feeling and doing.
Susan

Ladies, I started herceptin back in 8/01 when my breast cancer went to my arm (bone metastasis). I was strongly HER2+ and had wanted to start the herceptin before the bone met as a preventative. My initial diagnosis was June 2000, anyway, I've been on herceptin and zometa now for 3 years. My last dose I had an allergic reaction, difficulty swallowing, chills, short of breath, etc... so I am not sure I will take any more herceptin. Like you, I feel as if I am giving up my security blanket, but don't want to risk a more serious drug reaction. Lord willing they will come up with something new soon that will be even better!
God bless.
hummingbyrd

SusanAnne

hummingbyrd said:

Ladies, I started herceptin back in 8/01 when my breast cancer went to my arm (bone metastasis). I was strongly HER2+ and had wanted to start the herceptin before the bone met as a preventative. My initial diagnosis was June 2000, anyway, I've been on herceptin and zometa now for 3 years. My last dose I had an allergic reaction, difficulty swallowing, chills, short of breath, etc... so I am not sure I will take any more herceptin. Like you, I feel as if I am giving up my security blanket, but don't want to risk a more serious drug reaction. Lord willing they will come up with something new soon that will be even better!
God bless.
hummingbyrd

Hi Hummingbyrd. Sorry about your allergic reaction to the herceptin. I can't believe that can happen after 3 yrs. on the drug. Perhaps taking it along with Tylenol and Benedryl like someone else mentioned they had been doing would help. Did you have the reaction immediately (during treatment) or afterward? If you don't mind me asking, how do they feel the herceptin has helped you; Has it prevented further spread, or has it actually shrunk or cleared the cancer from the bones? I do hope you are presented with other options. I'll be thinking of you, please let us know how you decide to proceed.
Take care,
Susan

tulip66

hummingbyrd said:

Ladies, I started herceptin back in 8/01 when my breast cancer went to my arm (bone metastasis). I was strongly HER2+ and had wanted to start the herceptin before the bone met as a preventative. My initial diagnosis was June 2000, anyway, I've been on herceptin and zometa now for 3 years. My last dose I had an allergic reaction, difficulty swallowing, chills, short of breath, etc... so I am not sure I will take any more herceptin. Like you, I feel as if I am giving up my security blanket, but don't want to risk a more serious drug reaction. Lord willing they will come up with something new soon that will be even better!
God bless.
hummingbyrd

Hummer - I hated to read that you had an allergic reaction. I guess they are pretty sure it was the Herceptin? A lady that is being treated for her recurrent ovarian c. sits next to me almost every week that I take my Herceptin. She had an allergic reaction to one of her drugs several weeks ago. The same symptoms that you had - I was actually sitting with her when this happened! Her face and ears also turned cranberry red. Well, our Dr.'s have her take a type of steroid the night before she comes in (orally) and then another dose a few hours before her scheduled appointment. This premedication has prevented her from having another reaction. Her drip also goes in much slower. I do believe that there are ways to try to prevent another reaction. Please ask your Dr. about it before it is decided to stop if you are still receiving a larger benefit from the Herceptin. If you want me to I will see her this Wednesday to find out exactly what they do for her and then you can bring it up with your Onc. I know a lot of these medicines are hit or miss and many people react differently to them. They recently stopped having me take 50mg of Benedryl and 1000mg tylenol last week because they were no longer concerned about allergic reactions with Herceptin. Now I am wondering if I should continue to take them!

You are such an inspiration for so many on this board. I am sure that I am with many that want to be sure that you are getting the best care out there....just as we want for ourselves. Keep us up to date on your progress and what happens. On a very positive note two weeks ago I met a woman that had recurrent BC that went into her bones 9 years ago...yes, can you believe it? She only comes in for a monthly zometa.
Take care! Ruth

hummingbyrd

tulip66 said:

Hummer - I hated to read that you had an allergic reaction. I guess they are pretty sure it was the Herceptin? A lady that is being treated for her recurrent ovarian c. sits next to me almost every week that I take my Herceptin. She had an allergic reaction to one of her drugs several weeks ago. The same symptoms that you had - I was actually sitting with her when this happened! Her face and ears also turned cranberry red. Well, our Dr.'s have her take a type of steroid the night before she comes in (orally) and then another dose a few hours before her scheduled appointment. This premedication has prevented her from having another reaction. Her drip also goes in much slower. I do believe that there are ways to try to prevent another reaction. Please ask your Dr. about it before it is decided to stop if you are still receiving a larger benefit from the Herceptin. If you want me to I will see her this Wednesday to find out exactly what they do for her and then you can bring it up with your Onc. I know a lot of these medicines are hit or miss and many people react differently to them. They recently stopped having me take 50mg of Benedryl and 1000mg tylenol last week because they were no longer concerned about allergic reactions with Herceptin. Now I am wondering if I should continue to take them!

You are such an inspiration for so many on this board. I am sure that I am with many that want to be sure that you are getting the best care out there....just as we want for ourselves. Keep us up to date on your progress and what happens. On a very positive note two weeks ago I met a woman that had recurrent BC that went into her bones 9 years ago...yes, can you believe it? She only comes in for a monthly zometa.
Take care! Ruth

Thank you for the kind words Ruth, we all inspire and uphold each other here. Lord knows we have all been through enough. As for the optimum care that's kind of a funny one as I am usually the one who decides what will be done, sooo if it don't work I have no one to blame but myself. LOL
I could pre-medicate with a steroid and take benedryl, but like Jean I have recently developed a cough and some mild swelling of my ankles. I may get my heart checked, doc hasn't recommended it, but I may request it. I guess that would definately help me decide what to do next. In my heart, inner heart, I feel it's time to stop the herceptin. Most of my decisions I base on prayer and research...go figure. It is hard work to be a patient!
Susan, in answer to your question, I had another bone met to low back 10/01. Started herceptin 8/01. I think it has helped to contain the growth. The met in my arm started growing again 10/03, so I had it radiated again. I have routine scans. On bone scan I have a "hot spot" at neck (since 2/02) and mid-back (11/03), but they don't show up on MRI...go figure that one out! I tell them they are there, but they aren't there, that God has his hand on them and they won't grow unless He lets them. Drives the docs nuts! LOL Some of them anyway, especially since I won't take chemo again; he,he,he,he!
Oh well, gotta get your kicks where you can. : )
Don't recommend this for others, I think this is a very personal decision. It takes a lot of soul searching to really know how one feels about treatment and which route to take. Currently, I'm trying to focus on a good diet and lots of water. Personally, I don't think God would have laid any affliction on us that He did not also provide us with a cure. So my fight right now is advocating research into alternative medicine. Oh! enough of my soapbox! Anyone interested in alt meds just email me. Not to buy them, but to find out how or who to contact to advocate research into vitamins, herbs, etc.
Also, have a web site, Conquering Cancer Through Christ at www.urcctc.com
All are welcome to visit, God bless.
hummingbyrd

SusanAnne

hummingbyrd said:

Thank you for the kind words Ruth, we all inspire and uphold each other here. Lord knows we have all been through enough. As for the optimum care that's kind of a funny one as I am usually the one who decides what will be done, sooo if it don't work I have no one to blame but myself. LOL
I could pre-medicate with a steroid and take benedryl, but like Jean I have recently developed a cough and some mild swelling of my ankles. I may get my heart checked, doc hasn't recommended it, but I may request it. I guess that would definately help me decide what to do next. In my heart, inner heart, I feel it's time to stop the herceptin. Most of my decisions I base on prayer and research...go figure. It is hard work to be a patient!
Susan, in answer to your question, I had another bone met to low back 10/01. Started herceptin 8/01. I think it has helped to contain the growth. The met in my arm started growing again 10/03, so I had it radiated again. I have routine scans. On bone scan I have a "hot spot" at neck (since 2/02) and mid-back (11/03), but they don't show up on MRI...go figure that one out! I tell them they are there, but they aren't there, that God has his hand on them and they won't grow unless He lets them. Drives the docs nuts! LOL Some of them anyway, especially since I won't take chemo again; he,he,he,he!
Oh well, gotta get your kicks where you can. : )
Don't recommend this for others, I think this is a very personal decision. It takes a lot of soul searching to really know how one feels about treatment and which route to take. Currently, I'm trying to focus on a good diet and lots of water. Personally, I don't think God would have laid any affliction on us that He did not also provide us with a cure. So my fight right now is advocating research into alternative medicine. Oh! enough of my soapbox! Anyone interested in alt meds just email me. Not to buy them, but to find out how or who to contact to advocate research into vitamins, herbs, etc.
Also, have a web site, Conquering Cancer Through Christ at www.urcctc.com
All are welcome to visit, God bless.
hummingbyrd

Hummingbyrd,
Even though I am only a year + after my diagnosis, I hear what you are saying about the personal decisions regarding future treatments. I never really understood before all the talk about "quality of life" issues, but now I do.
Having said that, I do urge you to have your heart tested, regardless of whether you intend to continue with the herceptin or not. The heart is obviously so vital in the scheme of things and if it's in need of some help I think you will feel much better overall, both physically and mentally, if you take care of it. Then you will be in better shape to continue in whatever direction you decide. Make sense?
Susan

hummingbyrd

SusanAnne said:

Hummingbyrd,
Even though I am only a year + after my diagnosis, I hear what you are saying about the personal decisions regarding future treatments. I never really understood before all the talk about "quality of life" issues, but now I do.
Having said that, I do urge you to have your heart tested, regardless of whether you intend to continue with the herceptin or not. The heart is obviously so vital in the scheme of things and if it's in need of some help I think you will feel much better overall, both physically and mentally, if you take care of it. Then you will be in better shape to continue in whatever direction you decide. Make sense?
Susan

Perfect sense Susan, after all the heart is second only to the brain. I'm just so tired of being poked and prodded. If I can do without a procedure or medication or a doctor's office visit I am ALL FOR IT! LOL
(((HUGS))) hummer