• follow-up medication

    Asked by MarcieB on Friday, April 26, 2019

    follow-up medication

    My treatment (chemo, surgery, and radiation) is almost finished. My doctors are talking to me about taking medication for the next ten years, but the side effects sound pretty grim. I am curious about what other patients have chosen?

    15 Answers from the Community

    15 answers
    • 2943's Avatar
      2943

      You can ask what your statistics are with taking then not taking the aromatase inhibitor (AI). Also, not all experience side effects. There are three different ones to try. I chose to try. I was one that side effects were extreme so no longer taking. May be put on tamixifen. Oncologist feels better than not taking anything. I encourage others to at least try. You can always stop.

      26 days ago
    • cllinda's Avatar
      cllinda

      I'm on Arimidex for the last six years and I just get mild hot flashes. I was on it for five years and then my doctor suggested five more. So that's what I'm doing. He said it can keep the. Breast cancer away and also other cancers.

      26 days ago
    • Twinkletoes' Avatar
      Twinkletoes

      Arimidex for me. Just started taking it a couple months ago. So far no side effects except mild hot flashes.

      26 days ago
    • addysmum's Avatar
      addysmum

      Hot flashes for me - Don't like them but it is manageable

      26 days ago
    • Jouska's Avatar
      Jouska

      I am nearing my 5 year mark on Arimidex and have tolerated it well. I just met with my oncologist yesterday and he is hoping there are results at the May conference on whether the additional 5 years (total of 10) has improved survival rates. He says they know the additional 5 years do not increase toxicity or side effects, but are still waiting on whether it makes a true difference in survival rates. I would certainly take it for the 5 years and by then (5 years from now) they will certainly know more. Tamoxifin was proven to improve survival rates over 10 years, if that is the recomendation. Don't know which one your doctor is recommending. In conjunction with the Arimidex we have also done Zometa infusions every six months to improve/maintain bone density.

      26 days ago
    • MarcieB's Avatar
      MarcieB

      I so appreciate all these responses. I am due to see my doctor May 8th and she has already given me the info about Arimidex. I am wondering when she will want me to begin as I am still getting infusions of herceptin every three weeks (until October). The thing is - I have some family trips planned thru July and I REALLY want to feel good for those times. I know that sounds silly, but I have felt so crappy for so long and I am not eager to plunge myself back into that. I am not upset to think of hot flashes but joint pain and mood swings (especially mood swings) really scare me.

      26 days ago
    • Dltmoll's Avatar
      Dltmoll

      I have been on arimidex (extreme joint pain), exemestane (mood swings), tamoxifen (joint pain) and now letrozole (so far, so good.) Sometimes it takes trial and error to find what works for you, but there are options. I've also taken breaks from time to time for various reasons, which you could also ask your doctor about regarding your specific time and reason for not wanting to deal with side effects.

      26 days ago
    • gpgirl70's Avatar
      gpgirl70

      I was on arimidex for a year and had extreme joint pain so I switched to exemestane. Have been taking exemestane for nearly three years with only mild hot flashes. Never had any mood swings on either one. I wonder if that is very common because I’ve never heard complaints. I looked at recurrence when I started taking AIs and at the time they seemed significant, but it’s a good idea to ask in regards to your specific situation. Wishing you the best as you finish treatment.

      26 days ago
    • cllinda's Avatar
      cllinda

      MarcieB. Yes, you will get the Arimidex before herceptin is finished. I started right after radiation was finished.

      26 days ago
    • Carool's Avatar
      Carool

      I had Tamoxifen for 4.5 years and Femara for the ensuing 5.5 years. This ended 10 years ago. My only side effect was some weight gain. My breast cancer was also triple positive, but my oncologist didn’t prescribe Herceptin then. I’ve been okay so far. Wishing you the best -

      26 days ago
    • dreed's Avatar
      dreed

      I initially was on Arimidex. Due to joint pain, insomnia, night sweats/hot flashes- I was switched to Letrozole/Femara. Side effects more tolerable. 1,000 Vitamin E was added at bedtime-May have helped the nighttime issues. Still experienced some bone thinning & had to take weekly Fosomax.
      Took AI for 5 yrs, ready to be done, but didn’t want to risk return. Insurance approved Breast Cancer Index test (done on original tumor). Results showed continuing AI for another 5 yrs wouldn’t be beneficial- so stopped. Happy dance! Knowledge is power. Stay strong and may you see many blessings thru your journey.

      23 days ago
    • Ashera's Avatar
      Ashera

      I'm 64 now - and 3 yrs out from my dx of Stage 3b. I had very hard dose-dense chemo, needing blood transfusions and treatments for dehydration 3 times. had such horrible side effects that were left from the chemo year Like you, I took Herceptin for a full year. My "free-gifts-with-purchase" that are ongoing are neuropathy, lymphedema, bone pain, balance issues, thyroid problems, and esophgus issues. Which I had none of these before chemo. l I researched myself to death about adding AIs or tamoxifin - I knew the risk of each and the expected side-effects - more bone issues and more than possible issues with teeth. My oncologist struggled with me and said he would support whatever decision I made. He knew I was struggling with long lasting side effects from the chemo -
      I know you can fix teeth - I know you can take another drug for bone loss - I know you can add drugs for any heart issues that might arise - etc. And I know - like all those before who have answered positively...you can always start, switch, or then stop entirely - In my mind - these drugs do NOT guarantee that cancer will not return - they might lessen it - but at what cost to the way you feel. For me - I chose quality over quantity - and I said no. It's a hard decision to make. Do not be afraid to research all the pros and cons and feel confident about whatever you choose.

      23 days ago
    • Nightingale's Avatar
      Nightingale

      I took anastrozole for 5 years after radiation for a recurrence, was told I'd be on it for life. But, I stopped at the 5 year mark and 3 years later after going to the ER for a gall bladder attack and a CT scan was told I was Stage 4 MBC to bones and lungs. I'll never know if I'd stayed on it that it would have protected me but I've wished dozens of times that I hadn't stopped, none pain, hot flashes and all.

      19 days ago
    • dreed's Avatar
      dreed

      I am so sorry to hear what you are going thru.
      My previous reference to the Breast Cancer Index Test is for solely hormone receptive + tumors.

      19 days ago
    • petieagnor's Avatar
      petieagnor

      Back in '06 when I was diagnosed with BC, I was prescribed Arimidex for 5 years. I didn't have any real bad side effects. In 2016, I was diagnosed with Stage IV MBC. Maybe, if it was known to take it for 10 years, like now, I wouldn't be where I am now. I've been on 6 different chemos to keep it in check since July, 2016. I wish you the best.

      16 days ago

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