Long-Term Herceptin Risks

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in HER2+ (Positive) Breast Cancer

Anyone know of reputable (i.e., not quack) studies on the long-term risks of Herceptin treatment?  I know about all the short-term risks, but what about 10-15-20 years down the road?  I realize Herceptin is new, so there's probably very little data... but anyone know of any new or ongoing studies? 

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  • flash
    flash Member Posts: 1,685
    edited May 2009

    It hasn't been around 10years to even know.

    Good luck

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  • waterlady
    waterlady Member Posts: 56
    edited May 2009

    I know someone who was in the initial clinical trials with herceptin in 2000.  She is alive and well, and has no complaints.   I don't know much more than that.

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  • 07rescue
    07rescue Member Posts: 168
    edited May 2009

    I also know someone who was in the early clinical trial for Herceptin, she received it for 2 1/2 months. She had a recurrence 5 years later and died four days ago from complications of cardiac failure. Adriamycin was included in her initial chemo, along with the Herceptin, and she had no evidence of cardiac failure during her initial treatment. It showed up years later, when she had to stop taking Herceptin for her recurrence, but still ended up with untreatable heart failure. 

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  • snowyday
    snowyday Member Posts: 1,478
    edited May 2009

    Really good question Kaidog, for information I go to Onocology Stats, it's an information site for Oncs, patients, etc. They have some studies about herceptin on that site. And 07rescue, I am so sorry for your friend they have found that Adriamycin should not be given with Trastazamub, (herceptin) as it does cause hear failure.  I have been questioning the long term effects of heart failure on this medication. What is bothering me is the length of treatment 52 weeks or ever 104 week for some patients and only two studies not funded by Genentech were Finnish and the Fins are very good to their citizens, and New Zealand, well these studies said nine weeks were long enough for herceptin to work.  I have 7 treatments left but I am so afraid to go for my next infusion. For one I was on amytryptyline and on Onco info blast they said that cancer patients shouldn'e use this drug because of the side effects  (cardio problems) and I got a really bad bug, coughing, sore throat, runny snoots, and fever.  I read on the above site that a virus and herceptin can cause cardio problems so now I am really nervous.  I am became upset about herceptin because the phase III studies didn't include breast cancer patients with bone mets or bc patients with any heart conditons.  And they fast tracked the medication through the FDA.  I aplogize I am babbling I will include the side I go to for studies it's quite interesting. I also goolge Herceptin and Hype and found alot of really interesting articles as well.  I hope people don't get me wrong this is a great medication but my fears are the length of time on it and the cardio issues that go hand in hand with that.  I will find my site and put it on for you Kaidog on the next post in case I lose this one and again sorry for babbling, but I am so nervous this week. Oh and I found two lumps on my chin which has caused me pain since taxols so have to get that looked at. 

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  • snowyday
    snowyday Member Posts: 1,478
    edited May 2009

    Hi Kaidog here is the site I go to for lots of information you can sign up to be a member you don't have to be a doctor.  I get alot of really great info direct from oncs across the world.

    http://www.oncologystat.com/index.html

    There are all types of cancers you can look up I always check the breast off. And then use their search engine.  Good luck, I hope you find what your looking for, but so far I have only found a five year study.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    Well, let's see here...  Genentech developed Herceptin in 1990, and it got FDA approval in 1998, so it's been around for about 18 years in various treatment forms, and it's been used in over 150,000 women since it got FDA approval...  so there are probably studies out there, which I'm having a hard time finding.  I do know about the andriamycin-herceptin heart health link and my onc isn't even considering the ACTH regimen, so no argument there.  

    07 rescue - I'm so sorry about your friend.  I'm not sure which is worse - distant recurrence of a HER2+++ cancer or heart problems - but wow, she got BOTH.  I'm so sorry and I hope she died peacefully. 

    Snowyday, thanks for the information.  It sounds like you're very worried about your treatment and that you've not felt very well.   I hope you can go talk to your doctor openly about your side effects and that s/he takes you seriously; doesn't sound like much fun.  I really hope you feel better soon - that SUCKS.

    Hugs to all,

    Laura 

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  • 07rescue
    07rescue Member Posts: 168
    edited May 2009

    Thanks, Laura - yes, she did die peacefully in hospice, after a very long battle with breast cancer.

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  • snowyday
    snowyday Member Posts: 1,478
    edited May 2009

    Thanks Kaidog, your right I am really concerned about my treatment, I've managed to get alot of se's and I plan on trying again to talk to my onc about them, I really hope he takes me seriosly.  I don't want to have to live with cardiac problems for the rest of my life.  I hope you find what your looking for, I'm still hunting myself.  Good luck

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  • Sassa
    Sassa Member Posts: 1,588
    edited May 2009

    Kaidog,

    Remember that when herceptin was first approved, it was for use in metastatic breast cancer patients.  Unfortunately, there is probably no statistically valid information on long term effects because those patients did not survive long enough to collect 5 - 10 year data.

    The drug than was approved for patients in late stage disease.  Again, I am not sure if there is a statistically valid pool of patients available for long term followup.

     Herceptin was approved for use in early stage patients at the end of 2005.  Obviously not enough time has passed to collect long term data.

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  • joeysjourney
    joeysjourney Member Posts: 9
    edited May 2009

    I have been on Herceptin for 3 years as of today.  So far all my heart scans come out normal, but I do have the same concerns.  Looks like you are one of the few, but growing number, of triple positive breast cancer survivors.  I have been fighting for over 4 years now...I have never been in remission, but who knows?  Maybe someday!  I don't handle the 3 week dose of Herceptin very well, so I opt for the weekly treatment, or every 2 weeks...Keep the fight!

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  • 07rescue
    07rescue Member Posts: 168
    edited May 2009

    I also have opted for the weekly Herceptin at the lower dose, and I refused anthracyline therapy and went with TCH (Taxotere, Carboplatin, Herceptin) instead, because I didn't like the possibility of cardiac failure down the road. Watching my friend go through the cardiac failure and have to discontinue Herceptin (and all other chemotherapy as well) and watch her cancer metastasize was a good lesson in how awful that situation can be. The weekly lower dose Herceptin has more science behind it, that is the way it was administered in the first studies done, and it reportedly has a lower rate of cardiac issues than the higher dose given every three weeks, although there is no data to suggest that it works any better to control cancer so far. It is a greater investment of time to get weekly treatments, so that is the trade off. I have not had any cardiac symptoms, nor ejection fraction changes, in almost 6 months of Herceptin therapy.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    I'm doing TCH too...  Would be nice to have a better sense of the herceptin risks, but I know the metastasis risks, and that's enough to weight the scales in favor of herceptin.  Nice to know that so many people are doing well on Herceptin.  Thanks ladies!

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  • 07rescue
    07rescue Member Posts: 168
    edited May 2009

    It's too early to know about long term risks of Herceptin, but Genentech has had no cases that they know of in which someone taking TCH has developed irreversible cardiac failure. That has only happened to people taking anthracycline treatment (in our case it would have been Adriamycin) along with Herceptin, like my friend did years ago. The cardiac impairment seen from Herceptin given in the context of TCH has all been quickly reversible, so that most people in treatment can resume using Herceptin after a short discontinuation for their heart function to normalize again.

    Personally, I also have been using a small dose (90 mg/day) of Coenzyme Q10, an antioxidant that specifically protects heart tissue from oxidative damage, as an added protection. I caution everyone that many oncologists advise against taking antioxidants during chemo, the jury is still out evidence wise on whether they might interfere with some chemotherapeutic agents, so I am doing so at my own risk. 

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  • Brenda_R
    Brenda_R Member Posts: 509
    edited May 2009

    07rescue, "they have found that Adriamycin should not be given with Trastazamub, (herceptin) as it does cause hear failure", I'm so glad you posted that. When I was given my first chemo, they gave me Adriamycin, Cytoxin and Herceptin.  I did some research and found in Genentech's own drug fact sheet, they say not to give Herceptin with Adriamycin. I called my onc's office and questioned them and they actually said "we do it all the time!". When I talked to my Onc again, he said they'd wait until after chemo to give me Herceptin. I said that's all I wanted, and I asked for a Muga. My Muga was 55. Then they decided not to give me Herceptin until after my rads, since I was having targeted rads very close to my heart, for an IM node.

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