Straying the Course

Posted on: March 4th, 2016 by
19

I’m the kind of person who always starts what I finish. When I have a goal in sight, nothing — and I mean nothing — deters me. I am willing to do what it takes to stay the course. I am not a quitter, not by any stretch of the imagination.

But I quit taking Aromasin about halfway through my regimen. I felt like a failure then. Still do.

A disclaimer: This post chronicles my experience with aromatase inhibitors (AI). I am not suggesting that people quit their AIs, nor am I offering medical advice.

***
After chemotherapy and radiation ended, my oncologist put me on the aromatase inhibitor Aromasin. The plan was for me to take this AI for five years. My hopes clung on these pills; I never skipped a dose, and always took the pill at the same time each day. Understandably, I was so afraid of the devil called cancer, nothing would stop me from taking this medication.

At first, I tolerated Aromasin well. I was happy to be taking a drug that could improve my odds of not getting breast cancer again. I clung to these pills as someone in the ocean clings to a life raft. Aromasin seemed a salvation of a sort for me, and I felt I had an extra security net. At that time in my life I was athletic, and I jogged, swam, and did weight training.

Several months into my medication regime, I started feeling joint and bone discomfort. I didn’t know why. The discomfort wasn’t enough to deter me from living a quality life. I had an active social life and kept exercising, my workouts averaging two hours each.

One thing to know about me: I have a relatively high pain tolerance. I hardly needed pain medication after my bilateral mastectomy with reconstruction. With all the procedures done to me in my lifetime, I have felt pain, but I tend to tolerate it well. That’s not to say I’m a pain addict and a hero: if I need dental work, I tell the dentist to maximize the novocaine. I had a pain killer readily available after my DIEP flap procedure. I just like to have pain killers around — just in case.

So when the bone and joint pain started and continued, I easily ignored it.

Then it got worse. I started taking Tylenol, but I continued exercising. I didn’t yet realize that the pain might be a side effect of the AI. Fear was starting to plague me; I wondered, did I have a recurrence? The pain worsened over time, but I refused to call my oncologist because I was scared he’d tell me I had cancer again. And that fear was greater than the discomfort of the pain.

The bone and joint pain got significantly worse after the one-year mark of taking the AI. It was affecting the quality of my life, but I kept exercising and continued being active. The next year would find me in quite a lot of pain, excruciating at times. I still refused to tell my oncologist, fearing the worst.

After the two-year mark, the pain became unbearable and crippling. Even breathing hurt like hell. At this point, I was in anguish and became an animal trapped on a never-ending Ferris wheel of pain. I remember driving, crying all the way to my destinations because even the most minimal motions were excruciating. To relieve the pain I tried weightlessness — floating in the pool. I remember painfully stepping into the shallow end and floating, with no relief. It hurt to float in the pool.

I had no quality of life.

I finally summoned up the courage (or the smarts) to tell my oncologist, who immediately put me on Femara instead. The pain, however, didn’t let up, so he made the executive decision to take me off AIs completely, saying, “This isn’t the class of medications for you.”

I felt a combination of relief and fear. I was relieved that the pain would go away, but I was so scared to lose a possible protection against a recurrence.

Was my oncologist taking a calculated risk?

Was he a gambling man?

Did he know that I could stay healthy even without an AI?

I know my oncologist does not make his decisions lightly, and he puts lots of thought into what he decides.

I didn’t choose to go off the AI; he made the decision for me, so that took some pressure off me.

Still, I don’t like being an aromatase inhibitor drop out. It’s not something I’m proud of. Sometimes I feel shame and blame myself for not being able to finish what I started, especially a medication that could protect me against a recurrence. I feel like a failure. A quitter.

As the pain eventually subsided, I felt grateful. But to this day, I don’t know if going off the AI was the right thing to do. In the world of Cancer Land, there are no guarantees.

My friend Nancy Stordahl recently posted two excellent posts on her experience with aromatase inhibitors, which inspired me to write this post. You can read them here and here.

Ferris wheel

How do you feel about aromatase inhibitors or any other kind of medication you are taking to hopefully ward off cancer?

Did you ever have to stop a certain treatment? If so, how did that make you feel?


Tags: , , ,

19 Responses to Straying the Course

  1. Becky had this to say about that:

    I am remaining cautiously optimistic. l lasted 7 months on tamoxifen, but the headaches got so bad I was convinced I had brain mets. I did an MRI and it validated that everything was fine. Given my age, I could not simply go on an AI, I had to do lupron to block my ovaries first. Fortunately my oncologist encouraged me to go one step at a time. And so far I’m tolerating the AIs well … so I am optimistic that I shall continue to tolerate the well. I think that the blogosphere needs more positive stories about AIs and tamoxifen … there are people who have problems, but I also want to provide encouragement that not everyone does … some people tolerate them well … and if you don’t it is the drug that failed not the patient …

    • Beth L. Gainer had this to say about that:

      Hi Becky,

      I’m so glad you didn’t have brain mets, and I’m sorry you’ve suffered so much on Tamoxifen. I am also very glad you are tolerating the AIs so well.

      In terms of positive stories of AIs, I know there are positive ones out there. My purpose in this blog post was to share my own experience, which is not representative of everyone’s experience, and to state why I couldn’t continue with that medication and how inadequate that made me feel.

      You are right about the drug failing the patient. I have to keep reminding myself of that.

  2. Scott Johnson had this to say about that:

    You know you aren’t supposed to feel weak for stopping something that is doing you NO GOOD? And aside from the lecture, The thing is our bodies really do react differently and the whole idea of what is “normal” is always up for question.

    I’ve given up on having a procedure for having a mole removed even though I have a history of melanoma. I had an argument with the hospital staff over the way they treated my wife recently. I don’t trust this hospital any more and won’t go there for anything. But, I do trust myself to survive without their foolish and useless “care” AND worry at the same time. Is there a way to have a settled life after cancer? Don’t know. Maybe we know too much?

    • Beth L. Gainer had this to say about that:

      Hi Scott,

      That’s the thing: it’s hard to know whether the medication was doing me no good. Perhaps it was helping me, despite the pain. I guess I’ll never know.

      I’m sorry the hospital staff treated your wife poorly. It stinks to be ill, and it’s even worse when medical personnel treat patients poorly.

  3. Elissa Malcohn had this to say about that:

    I left this comment over on Nancy’s blog:

    My main side effect from anastrazole has been exacerbation of my carpal tunnel syndrome. So far, that has been manageable for me.

    However, I was hospitalized [in January] for a blood clot caused by my chemo port. My oncologist told me that I might want to go off endocrine therapy altogether because it carries a small risk of blood clots. Now that my port is out, if I experience another clot, then I am off any and all endocrine therapy, period.

    I quizzed the members of my medical team as I weigh whether or not to stay on anastrazole. I report my findings and my decision (at least for now) at http://csn.cancer.org/node/299754. More recently I also asked my pharmacist for his take. In response to my radiation oncologist’s statement that endocrine therapy makes a difference in disease-free survival but not in overall survival, the pharmacist said that this is generally true of meds, such as those for cholesterol, hypertension, etc. That’s info I didn’t have before.
    ———-
    Adding here: As to how I feel, I look at a potential choice of risking recurrence/metastasis vs. risking an acute life-threatening episode. “Staying the course” could conceivably kill me, and more quickly than stopping treatment would. There’s no way to tell for sure. In my blog post I assigned weights to the different variables, based on perceived probabilities and the personal value I assigned to each one. I wanted to make sure that I felt comfortable with what I believe is the best possible decision for me, based on the info I can collect. My general emotion there is a mixture of calm resignation and hope: que sera sera. My strongest emotion is that I am bummed at the loss of my port, given the state of my veins, i.e., a QoL issue.

    • Beth L. Gainer had this to say about that:

      Elissa, I’m sorry you’ve had such a major issue with your port and have gone through so much. I like your wording about “calm resignation.” I guess that’s the way I feel at times.

      All we can ever do in this life is make the best medical decisions we can. There’s no crystal ball.

      Wishing you well.

  4. Eileen@womaninthehat had this to say about that:

    My breast cancer was triple negative. There are currently no drugs for the triple negative patient once chemo is finished. And all I could feel was relief, even joy, that I didn’t have to take AIs. It’s over five years later and I’m still NED.

  5. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  6. Kathi had this to say about that:

    From the beginning, my med onc and I decided it would not be good for me even to try AIs, because my mom had had severe osteoporosis, which led to her death. The last thing I needed was something that might reduce my bone density. So, I took tamoxifen for a year, but then, I found out somewhat accidentally, when I had to take a week’s vacation from it to change another drug, how much it was affecting my concentration, mood, and energy. That week off was like having a boulder lifted off me, while I was still struggling mightily just to do my job and keep my paycheck intact. That was it for me. I went to my med onc and told her what I’d experienced. And she agreed with me that I could stop tamoxifen. Her take on it was that my recurrence risk was low enough, compared to my NON-recurrence likelihood, that it wasn’t worth sacrificing my quality of life in the meantime. It’s not like I could quit working. She figured I was sensible enough, and would be getting monitored well enough, that I would be okay. Over the next several months, not only did my concentration and energy improve, but my hair and skin and muscles all felt better, and I was taking vitamin D, so my bone density actually improved.

    We have to be able to live our lives. It does not help us prevent recurrence if we are in constant pain, have trouble working, have trouble exercising, and can’t take care of ourselves. All of those things are a lot more important in the scheme of things to prevent recurrence. Your onc knew that, which was why he advised you as he did. I keep hoping that new and smarter drugs will be developed (and they are being worked on) that will keep the beast at bay without all the collateral damage. That’s what we all need. xoxo, Kathi

    • Beth L. Gainer had this to say about that:

      Kathi,

      Thank you for sharing your experience with Tamoxifen. You and your doctor thought things through well and made the best decision you could. I had no idea that Tamoxifen could cause all the terrible symptoms you had. I’m glad you are feeling better.

      I’m sorry that your mom died of osteoporosis. I worry about osteoporosis a lot, given my chemo and AI history and the fact that both my mom and dad have it.

      Quality of life is so important, and you’re right about that. The physical and emotional stress were not healthy, so my oncologist and I made the best decision we could.

  7. Stacey had this to say about that:

    Hi Beth, dealing with all that pain while thinking “mets” must have been excruciating, not to mention, scary. After tolerating Tamoxifen pretty well for 5 years, I’m now on Femara (Letrozole) and the joint pain is quite bad in the mornings, but lessens during the day. At least so far. Hopefully, it won’t get worse or I’m going to have to face the same decision you did and like you, I don’t want to. I’m glad your pain is gone. Thank you for sharing this. xo

    • Beth L. Gainer had this to say about that:

      Stacey,

      I’m glad you tolerated Tamoxifen well. I’m sorry about the morning joint pain, but it’s wonderful that the pain subsides over the course of the day.

      Yes, making that decision to abandon the treatment was not an easy one. I have to accept it and move on.

      Thank you for reading and commenting.

  8. Nancy's Point had this to say about that:

    Hi Beth,
    Everyone is so different regarding how these drugs are tolerated, or not tolerated. I couldn’t tolerate Arimidex. At all. As you know, so far I’m doing better on Aromasin. I’m glad your oncologist made the call for you and took you off AIs. I’m sure it was freeing to have him make the decision. Like Kathi said, we have to be able to live our lives, hold down jobs, etc. It’s a balancing act for all of us, this thing called survivorship. Thank you for sharing your experience with AIs. And thank you for linking to my AI posts. xx

    • Beth L. Gainer had this to say about that:

      Hi Nancy,

      You’re right about our tolerance to this class of medications — or any medications — varying from person to person.

      I am so glad my oncologist made the decision to pull me off these medications. Quality of life issues are vital.

      I’m really glad Aromasin is working out better for you. xoxo

  9. Rebecca had this to say about that:

    Beth, you are no quitter! You have to do what’s right for YOU. And I am so happy your oncologist was able to listen to your concerns and took into consideration your quality of life. (I’ve often felt like a lab mouse.) Funny, I am finally going to post about ’emotional cancers’ and one of the things I’ve always struggled with is understanding how some people condemn themselves to suffering because of the fear of being judged for ‘walking away’ (not referring to you at all, just in general). We do our best and give it all we’ve got. If something doesn’t work or it makes our lives difficult to live, we have to make decisions. Sometimes walking away is healthier then holding on.

    About medications, I am on Tamoxifuck (excuse the language, apparently this is the new name!). I admit I am super scared of stopping this pill. I’ve been experiencing hip pains since last year (did an Xray and an MRI) and I suspect the cause is Tamox since they haven’t found any mets (thank GOD for that one!). My quality of life has been affected by this medication. My tumor was 99% estrogen + so it is hard for me to stop before the 5-year-mark, at least. Dr. wants me on it for 10. I want to build a family. There are so many decisions to be made! I don’t want a life where I only hold on to existence and nothing else. I want to hold on to other things too.

    May you always be at peace with every decision you make. xo

    • Beth L. Gainer had this to say about that:

      Rebecca,

      I so appreciate your comment and support. You are right: quality of life matters a whole lot, and I do think my oncologist did the right thing by taking me off the AI.

      I am looking forward to your post on emotional cancers. Sounds really interesting. I like the name Tamoxifuck. I don’t mind the language at all.

      I am so thankful no mets was found. It still stinks that you have been in so much pain. I totally understand the fear of not taking this medication. And I totally understand the desire to build a family.

      I also wish you much peace and hope that your dreams come true!

  10. Renn had this to say about that:

    Oh Beth I relate to all of this! I was on Tamoxifen for 2.5 years. Major SEs that I somehow got through (joint pain, weight gain, flu-like symptoms, feverish with no rise in temp). It was horrid.

    I switched to Letrozole (Femara) 2.5 years ago. I have extensive joint pain, lowered energy, concentration/memory issues.

    I just went for my 5-year-mark oncologist appt. to see if I needed to stay on the drug and if so for how many more years ’cause it was sucking the life out of me.

    He told me about the Breast Cancer Index (BCI) test… a biomarker test for early-stage BCers on anti-estrogen therapy at the 5-year mark. A piece of my original tumor is retested to determine how effective the anti-estrogen drugs are on my cancer and if my risk of recurrence is high or low. (This test is different than the Oncotype Dx test for anyone who has had that, which I also did).

    I am awaiting my BCI test results as I type this. I am still taking Femara and will decide whether or not to stop it based on my results. I will post about it on my blog once I know. Anyway, I had never heard of this test until I went in for my 5-year checkup! Something for everyone to ask your oncologist about, especially if you are having compliance issues with the drug due to side effects.

    • Beth L. Gainer had this to say about that:

      Hi Renn,

      I’m sorry you’ve had such pain and suffering. These treatments are not for the faint-hearted. I’ve heard of the BCI test through Nancy’s Point. Definitely something to bring up to the oncologist.

Add Your Comment, Feedback or Opinion Here

Your email is safe here. It will not be published or shared. Required fields are marked *

*

You may use these HTML tags and attributes:

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>