• Herceptin-Longer than 5 years?

    Asked by cllinda on Friday, January 6, 2017

    Herceptin-Longer than 5 years?

    The last time I saw the doctor, he mentioned that I will be on Herceptin for 4 years and said that now they keep people on it for up to 10 years. It is supposed to keep the breast cancer from coming back, and also keeping other cancers away. I was wondering if anyone else has been on it longer than 5 years and how the results are going. Is it worth it being on it for 10 years?

    15 Answers from the Community

    15 answers
    • Babs52's Avatar
      Babs52

      I am currently on Herception with Paciltaxil. When the treatment with Paciltaxil is complete in 6 weeks I will continue on Herception for a further nine months making a total of 12 months. Then will be switched to Tamoxifen for the rest of my life. I'm in Australia and I have not heard of treatment with Herception going longer than that perhaps its different in other country's. Its relatively new here and I had to request the government for its use. I have IDC with node involvement get a break from chemo after the six weeks then full mastectomy followed by radiation therapy. Herception can effect your heart so i suppose long term use would need to be monitored carefully. I wish you all the best, its a hard journey but do able, stay strong and as active as you can be, it does help.

      over 2 years ago
    • cllinda's Avatar
      cllinda

      I goofed on this one. I meant Arimidex! You can tell I wrote this before my coffee kicked in.

      So has anyone been on Arimidex for more than 5 years?

      over 2 years ago
    • Babs52's Avatar
      Babs52

      That makes more sense cllinda and I completely understand the lack of caffeine, Arimidex looks like Tamoxifen just under a different name here, I'm sure someone else in the community will be able to give you the info you require

      over 2 years ago
    • debsweb18's Avatar
      debsweb18

      Yes i take Aromasin, similar to Arimidex. I'll be on it for 10 years.

      over 2 years ago
    • leslie48240's Avatar
      leslie48240

      Yes...Been on generic Arimidex for 7 3/4 years. I was stage IV bc...(had spread to on my liver -2 tumors- and on my spine) The Herceptin knocked it down and Dr said I would need to be on Arimidex 'forever'. I could not tolerate the side effects (horrible joint pain that I never had before) til I cut the pills in half. That has worked for me. Dr NOT in favor of this...but I had to choose being able to enjoy life. So far...working. I still have some achey joints...but can't say for sure if it is from the Arimidex or my age (71). Exercise (mostly walking) definitely helps.

      over 2 years ago
    • lujos' Avatar
      lujos

      I'm on letrozole, stage IIb, node involvement, and will be on it for five years in total. I've heard that some countries recommend 10 years now, but so far they don't here here in the UK.

      I don't know what I'll do if they do say take for 10 years, to be honest! I've been on it 18 months so far. My hands really suffer on it, and I've already had joint replacement on my thumb. My skin has dried terribly, and I have a lot more wrinkles now.

      There's always a price to pay, as we know, the trade off isn't always easy.

      over 2 years ago
    • DorothyV's Avatar
      DorothyV

      I've been on Arimidex for five and a half years. My oncologist has said I will be on it for a total of ten years now. Main problems have been joint pain and hot flashes/night sweats. It's been tolerable but I was hoping to go off of it in six months. Praying for each of you

      over 2 years ago
    • lujos' Avatar
      lujos

      It would be nice if the medical people could have one story on this -- 5 years ? Ten? Forever?

      over 2 years ago
    • CAL's Avatar
      CAL

      I have been on Arimidex for 3 years and 9 months after stage 2B ER& PR+ infiltrating ductal carcinoma. I started after surgery, chemo, and radiation were completed and was originally told 5 years. My oncologist has mentioned more than once that "they" are now recommending 10 years. I am choosing to ignore that for now as I just try to live well. I will make that decision at the 5 year mark when I hope to have not had a recurrance. I do have side effects and I can live with them most of the time. I was post menopausal when I was diagnosed (61) and not in the best of shape physically (I need to exercise a lot more), so it is hard to tell how much of the aches and pains I have are age related, lifestyle related, etc. The hot flashes were more tolerable after I switched to taking it in the late evening before bed. When I took it in the morning, they seemed to occur during the night and caused me sleep problems. After switching to taking it in the late evening, I still had them but they occurred during the evening (I am assuming this occurred as the effects started to wear off towards the end of 24 hours) so I would just turn my little fan on for a few minutes ( I keep it next to my recliner) and then they would pass but my sleep is better. I still take extended release Melatonin every night at bed time as well and that also helps me stay asleep. So far my bone scans have been good. I do take a boatload of supplements (prescribed by my oncologist) which include Calcium & Vit D and try to eat a healthy diet but since he wants me on a no dairy, no meat (including chicken), no white flour, no sugar diet (I can have eggs, some fish, some tofu, legumes, nuts, some fruit, and lots of vegetables -especially dark green) it takes a lot more effort than I by nature am inclined to put into figuring out how to get all the nutrients I need to counteract the side effects of Arimidex. I have always been a lazy cook and even though I cooked a lot raising 4 sons, I don't really enjoy it. In the 4 1/2 years since I was diagnosed, my husband and I have both changed our cooking. We make things up without meat then I take my portions out and he adds meat to his. He eats a lot more fish as well now and decreased his red meat alot as well as his cheese intake. I have ready access to organic fruits and vegetables because my husband and two of my sons have a business growing and selling them, but it still requires planning and preparation and changing habits of the first 61 years of my life. I have cut down on my baking (which I do enjoy) significantly and mostly do it for special occasions and times of the year, but my sugar addiction is really hard to ignore. It's all a process

      over 2 years ago
    • mdybas' Avatar
      mdybas

      So my understanding is that the original biopsy is tested around the 5 year mark with some new test that is now available. At that point they decide if you go an additional 5 years. Even so, I am not seeing in my research that it makes a dramatic difference going an additional 5 years. (Under 5% from what I have seen.). That being said every cancer is different, and later stage cancers may need treatments for life. Ask your oncologist what your particular cancer's response rate is by going 5 more years. My very best to you.

      over 2 years ago
    • Ritagg's Avatar
      Ritagg

      I am starting my sixth year!

      over 2 years ago
    • Grandy's Avatar
      Grandy

      I've been successfully on it for 4 years.

      over 2 years ago
    • Grandy's Avatar
      Grandy

      My answer was for Herceptin.

      over 2 years ago
    • Ydnar2xer's Avatar
      Ydnar2xer

      Interesting to hear about long-term Herceptin. I was only on it for a year and will ask my Doc about it as I'm a 2x breast cancer woman already.

      over 2 years ago
    • Grandy's Avatar
      Grandy

      Ydnar2xer - I was diagnosed at stage 4 ( and not because I ignored anything.) Anyway, right away they said they've had a lot of success with Herceptin being used indefinitely. They have no plans to ever take me off of it.

      over 2 years ago

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