Herceptin and the heart

SusanAnne · February 2004

Last March I was diagnosed with stage 3, Her2 positive breast cancer. Since I couldn't be prescribed herceptin, I joined a clinical trial in order to get it. My MUGA scores slowly declined and when it got to 51%, I insisted on being referred to a cardiologist. If my score fell below 50, I would be kicked out of the trial. After doing an echocardiogram, he estimated my score to be between 45-50. He prescribed Accupril and Coreg (starting at low doses and increasing slowly). That was 2 1/2 months ago. I just had another MUGA yesterday and was thrilled to find out my score was 51. I believe that had I not been taking these medications, I would now be out of the trial. Had I not insisted on seeing a cardiologist, they would have just waited for me to fail. I'm not sure the oncologists even know that this help is out there. I did have to get these drugs OK'd by the clinical trial folks and they said it was fine. I just wanted all you girls who are taking herceptin to know that there is something that can be done to help give your heart some extra help in order to continue treatment. Good luck!

Susan

krisrey · February 2004

Hi Susan,
I am stage II but her2 positive. I was not informed of any options in taking herceptin even in a clinic trial. It is probably because I am stage II but my her2 positive is strongly positive. My treatment is all done, but now I am wondering if I should inquire about herceptin. Any information you can share about herceptin would be helpful to me.
Kristen

inkblot · February 2004

Hi SusanAnne:

By your "score" I assume you mean your ejection fractions?

All the research I've read and in talking with my doctor's about Herceptin, it can damage the heart and it can be permanent, and if you also have A/C, the A can also reduce cardiac ejection fractions and then be further compounded by Herceptin. Some people are just more susceptible to this damage than others. This is probably the reason one would be excluded from the trial if one dropped below 50.

If you go to www.nci.nih.gov you'll find some detailed info about Herceptin and cardiac effects, as well as Adriamycin and cardiac effects. If you type in Herceptin, on Google, you'll also find several other good sources of info about it.

Wishing you all things good.

Love, light and laughter,
Ink

tulip66 · February 2004

krisrey said:
Hi Susan,
I am stage II but her2 positive. I was not informed of any options in taking herceptin even in a clinic trial. It is probably because I am stage II but my her2 positive is strongly positive. My treatment is all done, but now I am wondering if I should inquire about herceptin. Any information you can share about herceptin would be helpful to me.
Kristen

Hi all - I too am taking Herceptin. Luckily, I have a brother in law who is a Cardiologist and I can ask him any questions that I have with this drug. He told me (as my local cardiologist also confirmed) that usually drug induced ejection fraction decreases will improve once the drug is stopped. Some patients stop Herceptin for a short time then resume once the ejection fraction gets better. Of course there is a small percentage where it does damage the heart. The good news is if you need Herceptin you can usually get it unless your ejection fraction gets below something like 30% (but obviously not participate in the trial!). People with ejection fractions in the 50's are considered very healthy and normal. In reference to Kristen's questions, my Onc. prescribed Herceptin "off label" for me so that I was able to get it since I am not participating in the trial that is ongoing. We are just following it because I had chemo before surgery and that was not in the protocol for the trial. I found the tumor while I was nursing my little girl and had to dry up before surgery! I think there are not many options for earlier stages with this drug unless you participate in the trial. The trial is for earlier stages who are HER2 pos. They give you Taxol and Herceptin instead of just Taxol. I finished the Taxol last November and now am just taking Herceptin weekly. I wish you all the luck and try not to worry about it. I have a dear friend who was stage IIIA (6.5cm; 5 pos lymphnodes) 11 years ago ER/PR negative when there was no taxol/taxoltere/Herceptin and she is just fine!
Ruth

SusanAnne · February 2004

krisrey said:
Hi Susan,
I am stage II but her2 positive. I was not informed of any options in taking herceptin even in a clinic trial. It is probably because I am stage II but my her2 positive is strongly positive. My treatment is all done, but now I am wondering if I should inquire about herceptin. Any information you can share about herceptin would be helpful to me.
Kristen

Hi Kristen,

There are a lot of trials currently using herceptin. Try going on clinicaltrials.gov. The trial I'm in does include stage II but I believe you would have had to apply during your original treatment. Herceptin can only be prescribed for stage IV, so a trial is the only way for us to get it as far as I know. You can also read about herceptin on the drug company's website at http://www.gene.com/gene/products/information/oncology/herceptin/index.jsp
If you do a general search for herceptin, you will come up with tons of reading. How long ago did you finish treatment?

Susan

SusanAnne · February 2004

tulip66 said:
Hi all - I too am taking Herceptin. Luckily, I have a brother in law who is a Cardiologist and I can ask him any questions that I have with this drug. He told me (as my local cardiologist also confirmed) that usually drug induced ejection fraction decreases will improve once the drug is stopped. Some patients stop Herceptin for a short time then resume once the ejection fraction gets better. Of course there is a small percentage where it does damage the heart. The good news is if you need Herceptin you can usually get it unless your ejection fraction gets below something like 30% (but obviously not participate in the trial!). People with ejection fractions in the 50's are considered very healthy and normal. In reference to Kristen's questions, my Onc. prescribed Herceptin "off label" for me so that I was able to get it since I am not participating in the trial that is ongoing. We are just following it because I had chemo before surgery and that was not in the protocol for the trial. I found the tumor while I was nursing my little girl and had to dry up before surgery! I think there are not many options for earlier stages with this drug unless you participate in the trial. The trial is for earlier stages who are HER2 pos. They give you Taxol and Herceptin instead of just Taxol. I finished the Taxol last November and now am just taking Herceptin weekly. I wish you all the luck and try not to worry about it. I have a dear friend who was stage IIIA (6.5cm; 5 pos lymphnodes) 11 years ago ER/PR negative when there was no taxol/taxoltere/Herceptin and she is just fine!
Ruth

Hi Ruth,

What does that mean that your Onc. prescribed it "off label"? How can the doctor just prescribe it if it's not FDA approved for the earlier stages? What stage were you? How long will you be on herceptin, did your doctor say? How is your EF doing while on it? I started the herceptin with the taxol in August, so we are pretty much on it for the same length of time. My EF only started at 55 before any chemo, so I didn't have much room to spare to begin with. Don't you find having a family member in the health care field such a bonus? I don't know how I would be getting thru this without my sister the nurse. Good luck with your little girl!

Susan

SusanAnne · February 2004

inkblot said:
Hi SusanAnne:

By your "score" I assume you mean your ejection fractions?

All the research I've read and in talking with my doctor's about Herceptin, it can damage the heart and it can be permanent, and if you also have A/C, the A can also reduce cardiac ejection fractions and then be further compounded by Herceptin. Some people are just more susceptible to this damage than others. This is probably the reason one would be excluded from the trial if one dropped below 50.

If you go to www.nci.nih.gov you'll find some detailed info about Herceptin and cardiac effects, as well as Adriamycin and cardiac effects. If you type in Herceptin, on Google, you'll also find several other good sources of info about it.

Wishing you all things good.

Love, light and laughter,
Ink

Hi Ink,

Yes, I didn't want to sound too technical, so I just called my ejection fraction a score. Like I said to Ruth, I only started out with an EF of 55, so it's not like I had a tremendous drop; just enough to put my trial participation at risk. Also like Ruth said, most of the heart side effects are temporary. I think the benefits of the herceptin outweigh the small risk of damage. Are you HER2 positive?

Susan

inkblot · February 2004

SusanAnne said:
Hi Ink,

Yes, I didn't want to sound too technical, so I just called my ejection fraction a score. Like I said to Ruth, I only started out with an EF of 55, so it's not like I had a tremendous drop; just enough to put my trial participation at risk. Also like Ruth said, most of the heart side effects are temporary. I think the benefits of the herceptin outweigh the small risk of damage. Are you HER2 positive?

Susan

Hi SusanAnne:

Yes, I was Her2 positive, 3+. I got 3 opinions before I began chemo, following lumpectomy and SLND. Only 1 facility suggested that I follow the A/C and Rads with Herceptin. At the time of my dx, Herceptin was being used only in trials and only for women who were Her2 pos. with positive nodes. I chose not to take their advice as my other consults thought it was way over the top for me. After much research, etc. I decided that I agreed with the latter.

We have several medical professional's in my family and while it's great to have them in my corner, I still research everything to my own satisfaction, realizing that health care professionals, can and do suffer from bias, just as anyone else.

I respect your decision and reasoning and at some point, we all must make these weighty decisions. Once they're made, it's full steam ahead and no looking back. If we're educated BEFORE we make those decisions, then we're in great shape. So much with cancer treatment is indeed a tradeoff and each individual must know and understand the risks and then decide what's best for themselves.

I wish you a good outcome and hope that your EF's hold up well for the duration and that they'll return to pre treament values once you're all done.

Continue to take good care of yourself!

Love, light and laughter,
Ink

tulip66 · February 2004

SusanAnne said:
Hi Ruth,

What does that mean that your Onc. prescribed it "off label"? How can the doctor just prescribe it if it's not FDA approved for the earlier stages? What stage were you? How long will you be on herceptin, did your doctor say? How is your EF doing while on it? I started the herceptin with the taxol in August, so we are pretty much on it for the same length of time. My EF only started at 55 before any chemo, so I didn't have much room to spare to begin with. Don't you find having a family member in the health care field such a bonus? I don't know how I would be getting thru this without my sister the nurse. Good luck with your little girl!

Susan

Hi Susan,

Yes, it sounds like we are in the same course of action. I did the weekly Taxol - what did you do? I was a stage 2 with pos. nodes/strong HER2 3+. We felt that I had a high risk of recurrance and I wanted to do whatever it took. An Onc. can prescribe any medication they want - as long as the patient understands the risks and the insurance will pay. The latter is I believe the real reason. He was comfortable doing this with me because he knew of the ongoing trial. I also know of other women in different cities who also are taking Herceptin and they are not stage 4. I am to take it until August. We will decide then if I continue it or not. I love having two brother-in-laws who are Dr.'s. They have helped a lot especially with the worries and concerns.
I hope that your EF keeps steady. I'm glad that you know that it can go back up after the herceptin is done. My EF started at 60 (but that was based on a MUGA scan). Then I tested on a catscan and it is in the range of 56-58. The most important thing was the overall health of the heart which was very good. I think that the risk is greater not to take it versus taking the herceptin so I am doing it too!
Thank you for the wish for my little girl. She is 17 months now and into everything!

Ruth

hummingbyrd · February 2004

inkblot said:
Hi SusanAnne:

Yes, I was Her2 positive, 3+. I got 3 opinions before I began chemo, following lumpectomy and SLND. Only 1 facility suggested that I follow the A/C and Rads with Herceptin. At the time of my dx, Herceptin was being used only in trials and only for women who were Her2 pos. with positive nodes. I chose not to take their advice as my other consults thought it was way over the top for me. After much research, etc. I decided that I agreed with the latter.

We have several medical professional's in my family and while it's great to have them in my corner, I still research everything to my own satisfaction, realizing that health care professionals, can and do suffer from bias, just as anyone else.

I respect your decision and reasoning and at some point, we all must make these weighty decisions. Once they're made, it's full steam ahead and no looking back. If we're educated BEFORE we make those decisions, then we're in great shape. So much with cancer treatment is indeed a tradeoff and each individual must know and understand the risks and then decide what's best for themselves.

I wish you a good outcome and hope that your EF's hold up well for the duration and that they'll return to pre treament values once you're all done.

Continue to take good care of yourself!

Love, light and laughter,
Ink

I've been on herceptin since 8/2001 with no cardiac side effects, Praise the Lord.
Course if you ask my ex, he would say I don't have a heart to worry about. LOL
hummer

krisrey · February 2004

tulip66 said:
Hi all - I too am taking Herceptin. Luckily, I have a brother in law who is a Cardiologist and I can ask him any questions that I have with this drug. He told me (as my local cardiologist also confirmed) that usually drug induced ejection fraction decreases will improve once the drug is stopped. Some patients stop Herceptin for a short time then resume once the ejection fraction gets better. Of course there is a small percentage where it does damage the heart. The good news is if you need Herceptin you can usually get it unless your ejection fraction gets below something like 30% (but obviously not participate in the trial!). People with ejection fractions in the 50's are considered very healthy and normal. In reference to Kristen's questions, my Onc. prescribed Herceptin "off label" for me so that I was able to get it since I am not participating in the trial that is ongoing. We are just following it because I had chemo before surgery and that was not in the protocol for the trial. I found the tumor while I was nursing my little girl and had to dry up before surgery! I think there are not many options for earlier stages with this drug unless you participate in the trial. The trial is for earlier stages who are HER2 pos. They give you Taxol and Herceptin instead of just Taxol. I finished the Taxol last November and now am just taking Herceptin weekly. I wish you all the luck and try not to worry about it. I have a dear friend who was stage IIIA (6.5cm; 5 pos lymphnodes) 11 years ago ER/PR negative when there was no taxol/taxoltere/Herceptin and she is just fine!
Ruth

Hi Tulip66
I am wondering why no trials were offered to me when chemo began, but I guess I can't go back there. I had an appt today with my medical onc and asked about the herceptin and basically she told me that right now you can't take it for procautionary measures. (I finished 4 a/c and 4 taxol in September). I guess the thing I hate most is sometimes I feel like its just waiting to come back. My her2 positive status was 4, so that is what scares me the most. I am trying to take a positive approach and am confident that I am doing all I can possibly do. I did find out today that there was no FISH test (spelling) done so they are going to run that for confirmation of my her2 status. Oh well, onward and forward, no turning back now..live for today, right!
Kris

krisrey · February 2004

hummingbyrd said:
I've been on herceptin since 8/2001 with no cardiac side effects, Praise the Lord.
Course if you ask my ex, he would say I don't have a heart to worry about. LOL
hummer

Hi hummingbyrd
I was just wondering about the side effects of the herceptin, does it have any hair side effects..just curious!! Are you on the herceptin for mets? Is it a chemo type med? Since you have been on it since aug 2001 are there any plans to take you off it, or are you on it indefinately?
I always learn so much from your posting hummingbyrd, I hope you don't mind my asking these questions.
Kris

hummingbyrd · February 2004

krisrey said:
Hi hummingbyrd
I was just wondering about the side effects of the herceptin, does it have any hair side effects..just curious!! Are you on the herceptin for mets? Is it a chemo type med? Since you have been on it since aug 2001 are there any plans to take you off it, or are you on it indefinately?
I always learn so much from your posting hummingbyrd, I hope you don't mind my asking these questions.
Kris

No problem, ask away!
I had a 4cm lumpectomy w/ 13 out of 27 positive lymph nodes, ER/PR+ and strong HER2neu. After chemo I asked for herceptin to 'prevent' bone metastsis. Was told it wasn't indicated as a preventative drug. Well, it ought to be, optional anyway, in my opinion. They are doing trials now with herceptin before patients progress to stage4.
There are no side effects in my case, hair or otherwise. I started it secondary to bone mets to arm and low back. It's not a chemo drug, it is a monoclonal antibody. Meaning it attaches to the tumor cells and prevents them from growing and/or causes cell destruction. They told me when I started it I would be on it the rest of my life, but I don't think they counted on me living this long! LOL
Soooo, not sure what we are going to do!
That's one reason I'm looking so seriously into alt meds.
Hope this answers some of your questions.
God bless.
hummer

krisrey · February 2004

hummingbyrd said:
No problem, ask away!
I had a 4cm lumpectomy w/ 13 out of 27 positive lymph nodes, ER/PR+ and strong HER2neu. After chemo I asked for herceptin to 'prevent' bone metastsis. Was told it wasn't indicated as a preventative drug. Well, it ought to be, optional anyway, in my opinion. They are doing trials now with herceptin before patients progress to stage4.
There are no side effects in my case, hair or otherwise. I started it secondary to bone mets to arm and low back. It's not a chemo drug, it is a monoclonal antibody. Meaning it attaches to the tumor cells and prevents them from growing and/or causes cell destruction. They told me when I started it I would be on it the rest of my life, but I don't think they counted on me living this long! LOL
Soooo, not sure what we are going to do!
That's one reason I'm looking so seriously into alt meds.
Hope this answers some of your questions.
God bless.
hummer

Thanks for responding hummingbyrd, sorry to hear about the mets. The herceptin seems to be keeping the mets at bay, so to speak. Hopefully herceptin will be offered soon BEFORE the mets, or some type of other drug. Are you also on tamoxifen for the ER/PR+? Like you I am strongly HER2 but I just can't help wonder why I was not offered any trials with herceptin. At the time I guess I was not informed enough or I would have questioned it. I sure wish I had found this site as I was going through the surgery. To bad the doctors or nurses do not give you information about the American Cancer Society website. Not only for the CSN but also for calling their 800 number and getting information. They are a wealth of information, and if they can't answer your questions, they have a researcher research it and call you back.
Thanks for the infor hummer, maybe I will visit the other site that you talk about.
Take care,
Kris

roxanne53 · February 2004

krisrey said:
Hi hummingbyrd
I was just wondering about the side effects of the herceptin, does it have any hair side effects..just curious!! Are you on the herceptin for mets? Is it a chemo type med? Since you have been on it since aug 2001 are there any plans to take you off it, or are you on it indefinately?
I always learn so much from your posting hummingbyrd, I hope you don't mind my asking these questions.
Kris

Hi krisrey and everyone!
Like you Krisrey, I have been wondering about the herceptin. I have been doing some reading on this drug. It had not been offered to me either. When first diagnosed, my oncologist said that he would be checking into clinical trials for me. It appears that is part of their routine as they have a person who specifically does that sort of thing. I will be asking about it to my oncologist, too. I am wondering too, why herceptin was not discussed with me.

I was diagnosed in March, 2003 after finding a lump in the right breast. This cancer is lobular. I had masectomy, chemo (AC/Taxol) and radiation. Now on arimidex daily. I am stage 3A with 5 out of 18 nodes positive, ER+ and Her2/neu+. I had also been diagnosed in March, 2000 in the left breast with ductal carcinoma in situ requiring a masectomy. So I am bilateral now.

I have been learning alot from everyone's postings and thankful this discussion board
is available.
Glad to meet you all & God Bless you all.

Roxanne

roxanne53 · February 2004

krisrey said:
Hi hummingbyrd
I was just wondering about the side effects of the herceptin, does it have any hair side effects..just curious!! Are you on the herceptin for mets? Is it a chemo type med? Since you have been on it since aug 2001 are there any plans to take you off it, or are you on it indefinately?
I always learn so much from your posting hummingbyrd, I hope you don't mind my asking these questions.
Kris

Hi krisrey and everyone!
Like you Krisrey, I have been wondering about the herceptin. I have been doing some reading on this drug. It had not been offered to me either. When first diagnosed, my oncologist said that he would be checking into clinical trials for me. It appears that is part of their routine as they have a person who specifically does that sort of thing. I will be asking about it to my oncologist, too. I am wondering too, why herceptin was not discussed with me.

I was diagnosed in March, 2003 after finding a lump in the right breast. This cancer is lobular. I had masectomy, chemo (AC/Taxol) and radiation. Now on arimidex daily. I am stage 3A with 5 out of 18 nodes positive, ER+ and Her2/neu+. I had also been diagnosed in March, 2000 in the left breast with ductal carcinoma in situ requiring a masectomy. So I am bilateral now.

I have been learning alot from everyone's postings and thankful this discussion board
is available.
Glad to meet you all & God Bless you all.

Roxanne

hummingbyrd · February 2004

krisrey said:
Thanks for responding hummingbyrd, sorry to hear about the mets. The herceptin seems to be keeping the mets at bay, so to speak. Hopefully herceptin will be offered soon BEFORE the mets, or some type of other drug. Are you also on tamoxifen for the ER/PR+? Like you I am strongly HER2 but I just can't help wonder why I was not offered any trials with herceptin. At the time I guess I was not informed enough or I would have questioned it. I sure wish I had found this site as I was going through the surgery. To bad the doctors or nurses do not give you information about the American Cancer Society website. Not only for the CSN but also for calling their 800 number and getting information. They are a wealth of information, and if they can't answer your questions, they have a researcher research it and call you back.
Thanks for the infor hummer, maybe I will visit the other site that you talk about.
Take care,
Kris

Tried tamoxifen, was on it for a year, then it quit working. Had a hys and started taken aromasin.
hummb

SusanAnne · February 2004

tulip66 said:
Hi Susan,

Yes, it sounds like we are in the same course of action. I did the weekly Taxol - what did you do? I was a stage 2 with pos. nodes/strong HER2 3+. We felt that I had a high risk of recurrance and I wanted to do whatever it took. An Onc. can prescribe any medication they want - as long as the patient understands the risks and the insurance will pay. The latter is I believe the real reason. He was comfortable doing this with me because he knew of the ongoing trial. I also know of other women in different cities who also are taking Herceptin and they are not stage 4. I am to take it until August. We will decide then if I continue it or not. I love having two brother-in-laws who are Dr.'s. They have helped a lot especially with the worries and concerns.
I hope that your EF keeps steady. I'm glad that you know that it can go back up after the herceptin is done. My EF started at 60 (but that was based on a MUGA scan). Then I tested on a catscan and it is in the range of 56-58. The most important thing was the overall health of the heart which was very good. I think that the risk is greater not to take it versus taking the herceptin so I am doing it too!
Thank you for the wish for my little girl. She is 17 months now and into everything!

Ruth

Hi Ruth and everybody,

I did the 4 cycles of AC and then started the weekly taxol with herceptin, and now just the herceptin. I went for my treatment yesterday and asked my onc. about prescribing the herceptin "off label". He agreed that it is done, some doctors will do it, others not. Even so, he told me that if my EF had fallen below 50 and I was booted out of the trial, he would hold himself to the same criteria and not give it to me either. Sounds to me like if someone really felt strongly that they needed to be on it, all you would need to do is shop around for an oncologist who will prescribe it.

Ink, I totally agree that we are ultimately the only ones responsible for our own care. I have learned to listen to all opinions and constantly (still) research anything pertaining to my dx and then pick and choose what feels right for me. Consequently, I am very confident about my decisions and feel like I am in control of my treatment rather than feeling like all this stuff is being forced on me. That feeling, in and of itself, gives me strength.

Roxanne, sorry this is your second go around. It amazes me that because we've had breast cancer, we are now at an increased risk for more breast cancer which can be totally different in it's pathology!

I'm now at the point of considering reconstruction options and will be setting up a consult within the next few weeks. I've polled my group of 5 oncologists, as well as my surgeon and others, about their opinions on how they would proceed in my case. Now I need to have a bunch of questions answered by the plastic surgeon. It seems like another whole phase of treatment.

It's nice to know this website is here. Thanks.

Susan

Herceptin and the heart

Comments

Discussion Boards