How many rounds of Herceptin are you at???

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mcmanus33
mcmanus33 Member Posts: 13
edited November 2016 in HER2+ (Positive) Breast Cancer

Next week will be my 45th round of Herceptin!

I live in Northern British Columbia, Canada and I have set myself a goal to be the longest active Chemo patient in our little town's hospital. I am planning a party for my 50th :) This is my New Normal, a Herceptin treatment every three weeks on Wednesday for the rest of my life, or till it stops working - whatever comes first.

A little about me: I was diagnosed at 33 yrs with Stage IV (bone mets), I did 8 rounds of what I refer to as my Toxic Chemo, and now I'm just plunking along with my Herceptin and daily Tamoxifen pill. (I say plunking because I gained an excessive amount of weight during my Toxic Chemo, and now I can't seem to shake it off, despite all my hard efforts.) My scans haven't shown any new growth of BC, but no-one has ever said "NED" to me. I think that the Herceptin & Tamoxifen combo has just taken the foot of the gas pedal that is my cancer.

It would be fantastic to connect with anyone who is in the same boat. I have such a hard time, because the Herceptin has very little side effects for me. I am still able to work full-time, be the mom to my 8 yr old boy and a wife to my husband. People are constantly assuming that I must be in remission or something but reality is I still have to go sit my butt in that chair every three weeks and have these chemicals pumped into me, because the alternative is too scary to face.

I'd love to hear from other women that are out there in a similar situation. My Vancouver Oncologist says that she has patients that are now receiving well over their 100th Herceptin treatment. Hopefully, if there are women out there in the hundreds of treatments, that will mean that I can breathe a little easier and sleep a little better knowing that it's still working for you means it might for me!


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  • CarlaK
    CarlaK Member Posts: 158
    edited January 2015

    Hi McManus- I'm about a year behind you-in March it will every 3 weeks in the chair for past 2 years (I also get Perjeta and take Tamoxifen) I feel very lucky, I can still work, keep up with the family and put up a good front that makes anyone not really paying attention think that everything's good. But I'm physically and emotionally not the same and sometimes I have to remind people and stick up for myself and say no, I can't manage that.

    I think you can be grateful and frustrated at the same time-I know I am! I hope your stability with Herceptin lasts a long time.

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  • mcmanus33
    mcmanus33 Member Posts: 13
    edited January 2015

    Thanks for your message CarlaK. Although, I would never wish this life on anyone, I'm so glad to hear that I'm not alone.

    I totally hear you on the - putting on a good front. I never know how to respond to someone when you run into them in the grocery store ect. and they say, "Hi, how are you?" Before BC a simple, "Great or Fine" would be perfect, but now it's like they are asking a loaded question. I have to think to myself, does this person know about my cancer, do they really want to know, do I even have time to tell them the truth? I'm starting to use the word STABLE a lot, it lets people know that I'm here, nothing has recently changed and I should be okay for a little while.

    When you go for your Herceptin, what do you call it? I have found that some people in my life are uncomfortable when I call it what it is - Chemo. I always have to follow up with an, "it's okay, it's not as toxic as the stuff I had with the start, and there are really very little side effects right now." For some people, like my boss, I just say that I'll be at the hospital tomorrow morning. He has no idea that I'm perfectly fine after my treatment and that it only takes half an hour. I always take the entire day off because it's my Cancer Day. I find it helps me to be not so Cancer focused on the days in between.

    Did you have any reconstruction done? Mine was a bilateral with immediate implants. For my 2nd anniversary, I had my nipple repaired (and tattooed) by my plastic surgeon and this year for my 3rd anniversary I am going to have a tattoo artist do some art work on both sides. I would just like to look in the mirror and see something beautiful. I think that I might even work up the courage to have professional photos taken, so that I can show people my tattoo without having to lift my shirt. LOL..

    Anyways, hope to hear from you and others out there sometime soon. Best get back to work now. :)

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited January 2015
    I have lost track of how many herceptins I have had. I started in July, 2010. I have had somewhere between 75-100.
    Unfortunately, after about 3 years on it I started to have more side effects.
    Now, I only get 5-6 doses spread out in a year.
    I have neuropathy in my hands and feet and body aches.
    The good thing is that I have been Ned for almost 4 years.
    Actually, Hercptin is not chemotherapy. It is immunotherapy . So, that is the term I use when explaining it to others
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  • mcmanus33
    mcmanus33 Member Posts: 13
    edited January 2015

    Thanks Lauriesh!

    NED for almost 4 years, that's terrific. Neuropathy - is that a common side effect of Herceptin? I'm going to have to look that up. I've been having some very subtle things changing lately, which I think could be nerve related. In your experience, do you think that Herceptin has a compounding effect?

    I see that you were first diagnosed in 2005. I bet you've had an incredible journey over the past 10 years. When I was first diagnosed I was told that I had a 5% chance of surviving past the first 5 years. The protocol that I have been given has been much milder than other patients, as they want me to have Quality over Quantity. Every year makes me grateful in hind-sight, but I struggle with living life to the fullest. Any advice you have about LIVING in the moment with this looming overhead would be greatly appreciated.

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  • CarlaK
    CarlaK Member Posts: 158
    edited January 2015

    No reconstruction for me-didn't want all the extra surgeries. Sometimes I wonder if having the mastectomy at all was a good thing, but I've been stable so I guess it was.

    I call my treatments "infusion" and if anyone asks I explain that Herceptin/Perjeta are targeted immunotherapies so not "chemo". But they still have side effects: drippy nose, fatigue, neuropathy, splitting nails, GI problems. Just lower on the misery scale than chemo. And I do think the side effects add up over time. The first year on Herceptin alone was pretty easy but now I definitely need the rest of the day/night to recover and I don't plan anything on my treatment day. I've talked to several women who thought they had no side effects with Herceptin until they stopped after their year was done-got their energy back and realized it really was affecting them. So naturally it's going to wear us down some after 2-3 years nonstop.

    I think that if I'm lucky enough to stay stable and see both my kids graduate high school (about 5 more years) then I'll take a long treatment break and see what happens. But for now I'm hanging in there, waiting for a progression but hoping the other shoe never drops

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  • juniper
    juniper Member Posts: 110
    edited January 2015

    Around 17 treatments a year for 7 years is 119 rounds of herceptin for me!

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited January 2015


    I did 13 rounds of Herceptin after my initial DX in Sept 11.   Finished treatment in Feb 13 and then DX with a spread to my adrenal gland in August 13.  Back on Herceptin every  3 weeks since then and like you will continue until it does not work any longer. So probably about 30 rounds (if my calculations are correct)  I also take tykerb.  Like you I am working, raising my kids (teens/young adults) and living my life.  Because I look well, people forget or think all is OK.  Overall it is OK, but life will never be the same. Cancer and treatment impact all my decisions.   SE's seem minimal. more SE's with tykerb.  I have been NED since Oct 13 , great news, and hope for many many more years 

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  • Sassa
    Sassa Member Posts: 1,588
    edited January 2015

    Back in 2008 when I was finishing my last herceptin treatments, I made a woman in the infusion room. She had been diagnosed as Stage IV in 1998 and was part of the original herceptin clinical trial. She was in her ninth year of herceptin tretment and going strong.

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited January 2015

    mcmanus--I'm curious why perjeta has not been discussed as a potential add on? I have done well so far with the herceptin, perjeta, tamoxifen, and Xgeva shots. I have notices this past year, the fatigue has increased as well as the neuropathy. Still very much more tolerable than the heavy duty chemo for sure! I am in about the same place as you...a little less...41 I think. A party sounds like a great idea. I plan on keeping this regimen going for as long as possible! I hope the same for all!

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  • SugarCakes
    SugarCakes Member Posts: 353
    edited January 2015

    Hi Kjomes. And I could say neighbor :)... I think. Is it Henderson or Hendersonville that's off US1 and 85?

    I start herceptin and Perjeta along with chemos Taxotere and Carboplatin next Monday. Are the things you mentioned along with herceptin and Perjeta chemo drugs?

    I see your are ER+ as well. I'm just HER2+.


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  • MicheTheVanquisher
    MicheTheVanquisher Member Posts: 105
    edited January 2015

    Nice thread mcmanus! In a few days it will be #17 for me, #11 without chemo drugs.

    Hmm, my first year down on Herceptin and Perjeta. I'm still trying to wrap my head around the new normal: not feeling quite the same even though I came through chemo pretty well and with my hair (thanks to cold caps). Now coming to terms with being tethered to every 3 weeks treatments and living with a little neuropathy and muscle aches but not too much else. I too am tired on infusion day.

    I moved across the country just a few months before being diagnosed so going back to school or getting a job in the new place hasn't happened. Seems like every time I begin to think about it something comes up and it's too easy to let things slide now. I don't have to work and am panicked about all the places in the world I haven't seen and now likely won't get the chance to and I'm busy with little things and getting back in shape but bored without a big project to work on now that this cancer project has settled into a routine and it's now just my life. I've been trying to figure out what to do as I enter year 2 of how many years? 1 more, 2 more, maybe 3 or 4? Or will I be one of the lucky ones that goes a decade or more? It seems very few family members or friends realize that this is actually an incurable cancer and that I will never by my super-strong, quick-thinking, hard-working self again. I do think though that the mourning period of leaving the old self behind and living with this one is beginning to come to a close. Time to get on with the rest of my life and make something of it.

    Geez, sounds like a need a good jump start to get things going, doesn't it.

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  • mcmanus33
    mcmanus33 Member Posts: 13
    edited July 2016

    Well, tomorrow will be my 70th Herceptin. My anxiety is busting at the seams, as it is also my annual CT scan day. I don't come online here as much as I should, but am thankful for the posts that are getting me through until the results arrive.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited August 2016

    Has anyone stretched their Herceptin/ Perjeta to a longer interval than the routine every 3 weeks?

    And I'm just finishing 2 years next week.

    Thanks, Brenda

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  • Deeze
    Deeze Member Posts: 3
    edited August 2016

    Hello,


    Beatmon--I'm quite interested in answers to your question. I've been taking every third week Herceptin infusions for 6 years. (So grateful for the longevity, especially in light of a Stage 4 diagnosis up-front). I have two married kids. My daughter is 28 and is 12 weeks pregnant. This is my first grandchild 🍼🐣🎉. My daughter and son-in-law are moving to Europe in three weeks. I'm very supportive of their dreams and goals, but my heart aches that I won't be able to watch my only daughter's pregnancy in person AND that darling baby will be born and live sooooooo far away. Yes, of course, my husband I will go there for the birth and visits. Hoping someone gives answers to your question as when the baby is due it is my hope to go over there for a month. Already my husband is saying I should get that out of my head because of my Herception schedule at every third week. I plan on asking my Oncologist (and insurance company) for an extension.

    My very best to you!

    Dee

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  • TFPMurphy
    TFPMurphy Member Posts: 13
    edited November 2016

    HI everyone,

    I haven't posted on this site for a long time but am back and so happy to how found this particular message board. My onc wants me to stay on Herceptin and Perjeta indefinitely and I thought she was crazy. We went back and forth, round and round, and finally agreed to continue for another 6 months and reevaluate. I am sure that in 6 months I won't fight her about the next. I just cannot handle her plans for a lifetime. Especially since I had to give myself an injection every day for a blood clot. We also agreed to a blood thinner in pill form, thank goodness.

    Brenda/Beatmom, I hope you got an answer somewhere regarding extending the length of time between treatments. I have extended the length of time by 2 - 3 weeks. I have done it a few times, some of those times without asking the doctor first. She wasn't too happy but I did it for legitimate reasons (conflicted with work, activities, scheduling of scans, etc.). I also went off treatment for a few weeks for surgery. So, it can be done. They don't like it, but it can be done.

    Murphy

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