Herceptin Side Effects
As a 22+ year survivor of Stage 4 MBC de novo, I have been on Herceptin for about 21 years. I have not had any problems until about a year ago.
During the infusion, I have chills and shaking. Sometimes it helps to request a warm blanket, hot cocoa and turning on the seat heaters. As soon as I leave the chemo center and if it is a hot day, the chills stop immediately. I learned that the Herceptin powder is refrigerated, and then mixed with saline.
When I arrive home, my BP goes as low as 65/47 and I get a 103 fever and am achy.
I am also on Xeloda, which doesn't seem to make a difference.
My nurses suggested that I take Claritin before my appointment, but that gave me tremors as soon as I entered the building. So it isn't an allergy to the Herceptin.
I am wondering about asking for the Phesgo injection, but I am past the stage where I would need Perjeta and not happy about hair loss.
Any suggestions?
Denise
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I don’t think perjeta or PHESGO will make you lose your hair. My hair is thinner than it used to be after regrowth from chemo, menopause and endocrine therapy but I am not bald or balding from PHESGO.
That said, there is also an injectable that is Herceptin only. the name of it is Herceptin Hylecta. It was developed before PHESGO and I was on it for awhile before PHESGO was available. You might try that if you don’t need the Perjeta?
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@olma61 Good point about Herceptin Hylecta — @denny123 Here is a link to check it out: Herceptin Hylecta
Also, there are Herceptin biosimilars you might want to ask about that might have less of an effect on you. You can read about them here: Herceptin biosimilars
We hope this helps!
—The Mods
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My wife has stage 4, diagnosed in July 2017. She has been on herceptin the entire time and also perjeta for the first 4 yrs. Her scans have all been good. She gets her treatment every 3 weeks. My question is, does anyone know of anybody that went off herceptin? Her doctor told us that if she does , the cancer will return with disastrous and most likely fatal effects. Has anyone else been told this? I appreciate any info.
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Hi @williej435, We are so happy to hear that your wife is stable! It is true that once you have found a treatment that works, people stay on it, and do not go off. So as long as that line of treatment is working, she' likely be advised from her treatment team stay the course. We have people who have been on this drug combination for over 10+ years, and it continues to keep things stable! We hope this is helpful, and glad you found us here.
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@olma61 Wow, I am amazed at how well you are doing.
I am new to this forum. MBC diagnosis in 2016, and been on Herceptin since. May I ask, does your energy feel limited due to it as well, and do you have any coping tips for this?
You are a true inspiration, and sorry to hear about the chills. (I find to be generally colder than normal, but just that re. body temperature at the moment.)
Many thanks.
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@olma61 Welcome! And we are here for you.
I have been on Herceptin for about 20 years, and it does a great job with my MBC de novo. I am always tired, but I have been on chemo for over 23 years. My nurses just say that my body is trying hard to fight off the cancer.
I am currently on Herceptin and Xeloda.
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I have been on Herceptin for almost 2 years now. You have no idea how incredible hopeful it makes me feel to read your story and reactions. I was diagnosed right away with bcm to my bones not knowing what road i was going to bumb into. Herceptin is the only treatment i get that doesn’t give me any serious side effects, except for the very cold liquid that makes my arm go very cold indeed. It doesn’t bother me since the start of all the other treatments put me straight into menopause. I somehow found a way to deal with the temperature issues and somehow it always gives me a certain feeling of safety to know that i have the blessing of receiving this treatment. I so hope that i’m able to say the same as many of you in the future, that i am on it for many years to come. All the best for you all with as little side effects as possible ❤️
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@Kiekbeau I sure hope that Herceptin continues to work well for you. I had 3 years of chills from the Herceptin IV into my chest port, but apparently it was because my port was so old and had bacteria in it.
It did help for me to use the heated seat option, warm blanket and hot soup. But now that I have a new port, I no longer get the shaking and chills.
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Denny, I'm so glad you are feeling better now. Good thing that infection was knocked back. ❤️
Just have to say, for me Herceptin has been a "miracle drug" and I think it is for so many others as well.
I feel so much gratitude to the researchers who would not give up in getting the drug cos to bring this drug to market.
Be well.
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