Thursday, January 14, 2010

Adventures with Arimidex


If you are new to this blog, or one of the angels that has been following on the carepages, welcome. Be assured that none of my rantings are complaints; I’m delighted to be alive, regardless of what it took to get me here. Nor is anything here to be construed as medical advice. I am a breast cancer survivor that happens to be a chiropractor and perpetual student, which gives me access to resources that may not be in the forefront of the news. My purpose in documenting this journey is to encourage your own research and remind you that you are not alone when, for example, your fingernails suddenly shred to the quick.

I love my oncologist. She timed each segment of my treatment to allow adequate recovery in between, and always gives me fair warning about the next step. Then she guides me into doing it on schedule while still letting me feel I have some control in the matter. That’s a warm fuzzy for a control freak, even if is an illusion.

My chemo cocktail was Taxotere/Carboplatin/Herceptin. I completed the first two in December ’08, but as a gift that keeps on giving, the after effects of Taxotere still continue to be achy feet and joints, especially first thing in the morning. Those were quickly relieved by just moving around, and the more I exercised, the better I felt. It was just weird to feel like my joints had suddenly aged 30 years.

Months ahead of her writing the prescription for Arimidex, she interjected the topic into each of our conversations, adding a little more detail each visit. Before my BC diagnosis, I rarely took prescription meds, and used over the counter (OTC) stuff so infrequently that it expired between uses. She knows and respects that taking any meds is a big deal for me. When I finished my year of Herceptin in September 2009, it was “time” for Arimidex. She patiently watched me dance around it for weeks with excuses to postpone the start date.

Both Tamoxifen and Arimidex are drugs taken for about 5 years after finishing chemo for breast cancer. They block estrogen receptors, a good thing if the tumor is “ER+” (estrogen receptor positive), which mine was. An oversimplified explanation of the differences between the two is that Arimidex is typically for post-menopausal women with early stage breast cancer, and Tamoxifen is for premenopausal women (thereby inducing premature menopause). For a more detailed explanation, there is a link to an expert at the end of this post.

Back to the matter at hand.

The list of “common” side effects of Armidex (they occur in 10-20% of patients) made chemo look like a picnic. Once I started taking the drug, I found that they can happen quickly. On the upside it significantly decreases the chances of breast cancer. Hopefully, that would not be due to a side effect killing me sooner. After a week of pretending I forgot to take it, by the beginning of October I ran out of excuses.

Because I was concerned about nausea or anything that would prevent me from working, I waited until a Friday night to take the first pill. I collapsed on the couch, waiting for my eyeballs to bleed and my feet explode. Nothing happened.
Within minutes there was an unfamiliar pressure in my head, similar to the onset of a headache, but I was fine by morning. That symptom still occurs frequently, but not enough to concern me.

Much to my surprise, over the next 2 days my skin looked surprisingly clear (the last herceptin infusion resulted in massive outbreaks). Or maybe the Arimidex severely affected my eyesight? My thoughts were more focused, my energy increased, no aches or pains. I even went for a walk/run and actually looked forward to it... for someone who hates to exercise, I felt this was a bonus.

About a week later, my fingernails started shredding like they did during chemo. I woke one morning with the feeling of an ice pick in my low back. I attributed it to maybe sitting too long or wearing the wrong shoes the day before. I did a few stretches, hobbled around and got on with the day. As it became worse over the following week, I made several visits to my chiropractor. I also have a multitude of effective modalities in my own office, and tried them all. I used cold laser treatments, my usual natural remedies, laser acupoint therapy. I finally succumbed to a few doses of Advil. Not only did nothing relieve it, but it continued to get worse and the pain kept me awake every night. By the end of the second week I wondered if the cancer had metastasized to my spine.

I called the oncologist’s office; they assured me that pain was a common side effect. It would diminish over time and if needed, they would prescribe… forget it. Every prescription pain killer gives me hallucinations, and not the fun kind. Even Advil or Aleve leaves me groggy. I stopped taking the Arimidex and within a few days the pain diminished.

Faced with the dilemma of jumping back into hell, I took dosing matters into my own hands and bought a pill-splitter at CVS. It took a couple of weeks and a few more chiropractic adjustments before the pain went away. At that point I went back on Arimidex at ½ dose for the first week, then full dose, and to this date, the pain has not returned.

After about a week, my thoughts became… negative. Not depressed or teary, but almost. Internal chatter about being a loser came out of nowhere and filtered my outlook. I started snapping at Dave, which is WAY out of character. We have such a blissful relationship that it tends to annoy a lot of people. Once I realized this sudden change was just a side effect, I was able to redirect my thoughts and improve my attitude. But its onset was so insidious that I can understand how it could easily lead to depression.

Oh yes, hot flashes. Long gone, they returned with a vengeance. Not the constant drenching kind, but enough to be aggravating during the day and keep me awake at night. Another side effect of Arimidex is insomnia, but the hot flashes are so prominent at night that I can’t distinguish if I would be able to sleep otherwise. I can work around pain, but I can not tolerate sleep deprivation. It leaves me foggy and disoriented, affecting my decision making and communication abilities, and overall unraveling my life.

During chemo, I never used the collection of anti-anxiety meds that were prescribed in anticipation of their need. But I remembered that one med had a dual use of anti-nausea and insomnia relief. Reluctantly, after trying herbal and supplement formulas that work in normal circumstances, I found I need the 1mg of Lorazepam to get a good night’s sleep without the hot flashes waking me. It’s not so bad; if I do have to get up during the night, I easily fall back to sleep, and never feel groggy the next day.

The challenge with natural remedies is that they can face an uphill battle against the unnatural pharmaceuticals, but that is another topic. I still don’t like having to take anything, so acupuncture is on the list as soon as my budget allows. I’ll keep you posted.

Two weeks into the second round of taking the full 1 mg dose of Arimidex, a migraine started mid-afternoon. My only history of migraines is on the rare occasions when I didn’t eat on time. Since I learned to balance my blood sugar, it happens only a few times a year, and goes away with a nap. This migraine was relentless for the next 30 hours. That night I did not take the Arimidex, and it went away within a couple of hours.

A few days later, I noticed a twinge in my right shoulder when I reached back into the console for the garage door opener. It was not relieved by chiropractic or any of the previously mention remedies, modalities, or non-prescription pain relievers. As the pain progressed, simple reaching and lifting became difficult. I stopped taking it about a week ago, and within 24 hours the pain was down nearly 50%. It’s almost gone now; I only noticed it during a yoga stretch yesterday. To get rid of the last bit of inflammation I’ll start with the natural stuff, and if needed, an OTC once or twice. As soon as I can do those movements without pain, I’ll be back on a ½ dose and work up to the full dose again.

I’m learning to pick my battles to manage symptoms. Over the past 18 months, many angels in human and other forms have inspired me to find solutions along the way. Some worked, some did not. I took a MacGyver-like approach to many of the surprises that arose, and came out the other side with a big sigh of relief. As much as I used to avoid exercise, now it is a necessity or my joints will lock up. I take a variety of supplements (including MCHC calcium and high doses of vitamin D) monitor my vitamin D levels with my other quarterly blood tests, and I’m due for another dexa scan to make sure the Arimidex is not disintegrating my bones.

Below is a list of Arimidex side effects. I do not suggest you do what I do. Every cancer is different, every person responds differently to any given treatment or illness. But knowledge is power. Being aware of the possible symptoms can give you more control by knowing what to monitor, what to ask your doctor, what choices to explore. If you do have side effects, please report them to your doctor as well as the FDA at FDA MedWatch.

If we don’t speak up, they don’t know. I am not anti-drug. I am anti-drugs-that-do-more-harm-than-good. A couple of paragraphs of resources follow; please share your story by clicking on “Comments.” Be well.

Common side effects of Arimidex include hot flashes, weakness, joint pain, pharyngitis (sore throat), hypertension, depression, nausea, vomiting, rashes, back pain, insomnia, headaches, coughing, shortness of breath and swelling of the lymph nodes or extremities…. asthenia (lack of energy & strength), arthritis, pain, fractures, back pain, pain, headache, bone pain, increased cough, dyspnea (shortness of breath), and lymphedema… onset of osteoporosis… increased cholesterol levels.
Other risks include severe allergic reactions, heart attack, stroke and liver dysfunction.
Serious adverse reactions with ARIMIDEX occurring in less than 1 in 10,000 patients, are: 1) skin reactions such as lesions, ulcers, or blisters; 2) allergic reactions with swelling of the face, lips, tongue, and/or throat. This may cause difficulty in swallowing and/or breathing; and 3) changes in blood tests of the liver function, including inflammation of the liver with symptoms that may include a general feeling of not being well, with or without jaundice, liver pain or liver swelling.


My favorite site for more-than-you’d-ever-want-to-know-about-your-meds is rxlist.com, where you can find side effects, drug interactions, details of the studies, comparisons with Tamoxifen and post-marketing info – the stuff they find out AFTER the drug is released upon us.

For a simplified explanation, here is a link to an excellent article: Antihormonal Therapy for Breast Cancer

What have been YOUR adventures with Arimidex?

29 comments:

hawghugger said...

Hey Laurie, Sandy/hawghugger (from carepages).
It's good to hear from you and glad things are going fairly well for you. I have to say, when I read the TW Zone intro, I had to set back and have a good laugh. It is sooooo TRUE. Life after the big C can be a real hassle at times. The Doctor's seem to forget to tell you about all the side effects that creep up years later after chemo and radiation. But, then too.....we are still here to talk about them.
I am not on the medication you talked about, since my cancer was cervical and then bladder, but, I do still have the side effects of over aging bones and joints. Just glad the bones and joints are the only thing that is aging that fast. lol
Keep that smile on your face and in your heart, and know we (carepages angles) are still here praying and sending good thoughts your way.
fellow cancer sister and your newest follower
Sandy Hembree


p.s. go check out my blog when you get a chance.
http://sandyssewclever.blogspot.com

joinourloop said...

sorry you are having such a bad time on the AI's.

Heather Acton said...

Hello unfortunate fellow adventurer. I found your information on Arimidex and took some comfort just reading a shared experience. I, too, had considered cutting my Arimidex pills in half but am now off Arimidex altogether and on Tamoxifen instead. I've been off Arimidex for almost three months and am still experiencing bone/joint/muscle/tendon issues, though not nearly so bad as they were. And I was only on the drug for 6 weeks! It scared the pants off me! Particularly upsetting is that none of the literature about the drug given to me indicated that this could be a real problem. It was only after researching my problem that I made the connection between it and Arimidex. Then, after contacting my oncologist, it was apparent that he was well aware of it being a fairly commonly experienced side effect. Some annoyed I was!

I, too, blog my breast cancer experience here ...

I look forward to reading more of your blog. Thanks for blogging. Learning from the experiences of others has been so helpful for me.

I wish you complete wellness!

Heather Acton said...

Sorry. I forgot to leave the link to my blog, which documents my own journey with breast cancer ... http://heatheracton.blogspot.com

Laurie (@Turban_Diva) said...

Thanks, Heather! I appreciate your feedback. It gets worse... I'm working on an updated post now & will have it up by this weekend. The good news is that after being off it for 3 weeks, I have more energy than I've had in years! All the best to you!
Laurie

Elizabeth said...

In 2004 I was diagnosed with breast cancer. Had left side mastectomy and took Armidex for five years. Now, in 2010, once again diagnosed with breast cancer, left side. Had another mastectomy several weeks ago. Will see same oncologist next week. Am uneasy. Any suggestions or recommendations?

LaurieA (@Turban_Diva) said...

Hi Elizabeth; I am so sorry to hear about this. I'm not clear if you mean you feel uneasy about your oncologist, the diagnosis, the treatment options or the situation in general, which is understandably upsetting. Without knowing more about your situation, I am just making a generalized comment. Whenever you feel uneasy, follow your gut. Before your visit to your oncologist, you can make a list ahead of time of questions you may feel are unanswered or you don't understand. I always suggest you bring a partner or friend with you, because an extra pair of ears is valuable, especially when you are under stress.

You can also get a 2nd, 3rd or 4th opinion on your case. Talk to other women in your area about their oncologists and experiences. Check with support groups if you are not already involved with one. The first lab that analyzed the tissue after my first lumpectomy came up with what we later found was a wrong diagnosis, when the oncologist I went to for a second opinion had it retested.

When you were first diagnosed in 2004, I believe there was not yet a test for the HER2/neu factor, which now makes a significant difference in treatment options.

Treatment choices are so personal and individual. Even though my body was too sensitive for Arimidex, I would never suggest that someone does not at least try it. They may be better able to tolerate it. I wish you the very best, and please post again to let me know how you are doing.

Annie C said...

Hi everyone,

I like the name reluctant sisterhood. I too cannot tolerate Arimidex (well, the generic Anastrozole). For the first time ever, the thought, "I might rather die than live like this crossed my mind". I had very aggressive cancer that advanced to Stage 3 before they could even get me o the operating table. Thankfully, 5 months of chemo later, it shrunk enough to get it all. I sailed through chemo, mastectomy, radiation, hysterectomy during radiation, and by sailed I mean, kept smiling, kept working, kept dancing, no matter how bad I felt at times. But this stuff? I don't know how anyone survives this and calls it living. I was on it for 6 weeks. Was too sick Tuesday and missed my onc appointment. Now she won't see me for six more weeks. I am at a total loss. I have tried to change once but with my insurance situation it has been virtually impossible. I'm sorry I'm babbling, but Laurie, you seem like me, a tough little penguin, and sometimes when us tough gals hit an impasse, well, what do we do? I'm looking into alternatives. So much controversy. Please keep us posted on your progress. As a medical professional who is blessed with a good onc, you might just have an inside track. I've been off the drug for two days and am beginning to feel like Annie again... God bless.

Laurie (@Turban_Diva) said...

Hi Annie, thanks for your comment. I can certainly relate to how those side effects feel.

Since my original post, I have met several women on the med that had not had any side effects. My onc suggested that it's a genetic susceptibility - some women have horrible side effects. I've also spoken to those that had incapacitating side effects and kept taking the drug anyways. It is such a personal choice.

I want to make it very clear that anything I discuss in this blog is purely anecdotal unless I give research references, and by no means is meant to be medical advice. I'm just a person who has been there, done that, and keep this open for all of us to share our experience.

Whatever you decide, do your homework, talk to other cancer patients, maybe visit some support groups - this is where I found a wealth of information. Your cancer center should have a "navigational nurse" who can help you with questions in between onc visits. You can find out more at http://www.nconn.org/

Another helpful site is www.navigatingcancer.com

I have a close friend that has been surviving stage 4 cancer beyond what anyone anticipated, and has aggressively done her homework in seeking complementary care. She did say she wished she had paid more attention to the anti-estrogen meds from the beginning. She tried several before settling on Femara, which seems to be the only one that didn't give her bad side effects.

She has done several things IN COMBINATION with conventional treatment. Whatever you take, it's important to let your doctor know. "Natural" does not mean it is safe in every situation, and many herbs/vitamins can interact with meds. I'm passing on the info, but I have not tried any of these yet. The most recent thing she is taking is Protandim. This is a MLM company, and I do not have any connection or financial interest.

I'm 3 years past treatment, and confess that after the arimidex experience I buried my head in the sand concerning the meds. My onc is so understanding, gives me all her recommendations and respects my decision, whether or not she agrees with it. 6 months ago she gave me a clean bill of health - which is always a statement "for the moment," but I'm about due for another follow up and I may talk to her about another option.

One of the things that is important no matter what you read is exercise. Being sedentary is the most damaging things for our health.

Good luck, and please keep me posted.
Love & light,
Laurie

Anonymous said...

I hope that your improved have improved with time. I just wanted to offer a more upbeat view if someone is reading this and fears starting the drug. I was on Tamoxifen for 2 years, and then switched to Arimidex. After 2 days, I felt lighter, more energetic, my achiness disappeared. One year on, I feel great. Very occasional stiffness, but no big deal. You won't know what happens to you until you try it and you might be pleasantly surprised.

LaurieA (@Turban_Diva) said...

Thanks for your input. Everyone is different, and it's good to hear from the other side. I am now 4+ years past treatment, doing great. I was unable to tolerate the Arimidex at all and opted out of any of those meds. Was it the "right" thing to do? I don't know. I'm on the side of following your doctor's advice, and always discuss your concerns and side effects. I wish you continued vibrant health!

Anonymous said...

I am just starting this journey. I had inflammatory breast cancer and have had chemo (12 taxol & 4 AC), mod. rad. mastectomy, and radiation. Despite following all the stretching exercises and precautions, I already have lymphedema. I tried anastrozole for a week and had fast irregular heart, very high blood pressure, and extreem dizziness. I also had diarrhea and allover pain. They said diarrhea must have been something I ate and that the pain was my arthritis flaring up, but I had not eaten anything different and the pain was nothing like my normal arthritis which is in joints only. Plus, I was already taking my arthritis med. It took about three weeks for heartrate and blood pressure to return to ormal and now they want me to try he anastrozole again. To be honest, I'm scared. Anyone else have these kinds of side effects? Did your body adjust or did you have to discontinue?

LaurieA (@Turban_Diva) said...

Hi,thanks for your comment. Everyone is so different, and it is important to always consult your medical professionals on this. As you can see from different posts, people have had a variety of side effect, and some had none. Some women adapted over time, and others, like me, did not. My personal choice was to discontinue the drug because I couldn't function on it. I talked at length with my oncologist, who told me about other similar meds that were options and many not have these side effects. I think among them were Tamoxifen and Femara, but that was a few years ago. If you don't feel comfortable with the response you are getting, you may consider a second opinion at another cancer center. Are you getting physical therapy for the lymphedema? I don't have it, but I understand from others that it can help considerably.

Anonymous said...

Laurie, thanks for your answer. I do have an excellent therapist for lymphedema. And it is getting better.

My oncologist did say there are other medicines to try, so my next appointment, which is in a couple of weeks, I will plan out and have a written list of questions. A couple of other concerns I have since going to my GP and getting checked for all the regular stuff. I found I am vitamin D deficient, have beginning osteosporosis, mildly high cholesterol, and my thyroid TSH was at 15. All these are changes that occurred during the year of cancer treatments and my GP has started treating them (suppliments and higher dose of synthroid). So I am wondering if some of these may affect my tolerance for anastrozole or other anticancer drugs. I know the osteosporosis and cholesterol can become worse on them.

I don't want cancer to return, but I don't want to die from heart problems instead or become crippled from bone side effects, either. Reading your blog and the other comments helps give me the courage to make my own decisions for my total health.

LaurieA (@Turban_Diva) said...

I'm so glad to hear your Dr. had those Vit. D levels checked; a deficiency can contribute to so many health problems, including cancer. It sounds like you are well informed and have a wonderful team there. Please keep us posted! xox

Elena said...

I looked up side effects for this drug and found your blog. I started on Femara, was so sick my onc said take a month off. When I went back they put me on Armidex. It's been about a week. I am MISERABLE! Sick to my stomach, insomnia, terrible headaches that cannot be relieved by my fiancé who is a Chiropractior. I simply am at a loss. I hear you on chemo having been a picnic over this. Absolutely true. Last night I literally got not one wink of sleep. The second day in a row. Me depression is out of control, the meds seem worthless, I feel helpless, hopeless and scared. I'm so relieved I am not the only one out there feeling this way. Thank you all for you input, I truly appreciate it.

Anonymous said...

I looked up side effects for this drug and found your blog. I started on Femara, was so sick my onc said take a month off. When I went back they put me on Armidex. It's been about a week. I am MISERABLE! Sick to my stomach, insomnia, terrible headaches that cannot be relieved by my fiancé who is a Chiropractior. I simply am at a loss. I hear you on chemo having been a picnic over this. Absolutely true. Last night I literally got not one wink of sleep. The second day in a row. Me depression is out of control, the meds seem worthless, I feel helpless, hopeless and scared. I'm so relieved I am not the only one out there feeling this way. Thank you all for you input, I truly appreciate it.

LaurieA (@Turban_Diva) said...

I'm so sorry to see you are going through this. I know about that pain - nothing relieved it, including chiropractic, cold laser or meds. The pain wouldn't let me stay still long enough for acupuncture, so I can't comment on that. Please remember the depression, hopelessness and other negative emotions may be side effects of the meds, and not your "true self." Talk to your doctor right away, and please keep us posted.

LaurieA (@Turban_Diva) said...

Studies are being done to find relief for the problems of pain with these meds:
http://talkabouthealth.com/if-joint-pain-is-experienced-while-taking-an-aromatase-inhibitor-ai-what-are-the-next-steps

Susan Piper said...

I had a tiny tumor treated with mastectomy alone back in 1982. In 2008 BCA came back in my liver, lymph nodes and pleura. My doc later told me he thought I might live a year. He put me on Arimidex (I was 67), and the tumors started to shrink right away. Three years ago they could not be seen on a CT scan. I am thrilled with that result and not so thrilled with side effects.

The hot flashes have been the worst of the side effects. I barely slept for the first few months and was nearly psychotic from lack of sleep. The first remedy was Effexor. That worked great, but I wasn't happy about the sexual side effects. The next remedy nearly solved the problem. It was a Catapres patch which is used for lowering blood pressure. I now use the strongest dose which is .3 mg, one patch per week. The hot flashes didn't go away and were still quite annoying though much improved. I then started acupuncture which I get at a local college of Oriental medicine. They also mix Chinese herbs for me. Between the Catapres, the Chinese herbs and acupuncture the hot flashes are almost completely gone. Stress will bring one on, but they aren't nearly as intense. I have been fortunate in that I can get acupuncture from students for as little as $l5 per session. That has allowed me to have twice weekly sessions.

Other annoying side effects have been dry eyes, dry mouth and vaginal dryness. My oncologist lets me use an Estring which helps with the last of those. Acupuncture and Chinese herbs have helped a lot with the eyes and mouth.

I have had bad knee problems which have been helped a lot by a body worker who has helped me change my posture and my gait. Acupuncture is also improving the function of ligaments and tendons.

Insomnia as I mentioned above has been a real problem even without the hot flashes. My naturopath suggested 40 mg of melatonin which is also supposed to be inhospitable to breast cancer. That has really helped a lot. Pure makes a 20 mg capsule that is fairly reasonable in price. I sometimes can't go back to sleep after getting up to go to the bathroom. My acupuncturist suggested deep breathing along with the mantra, "My mind is relaxed; my body is relaxed." That works pretty well. Constant practice of deep breathing has additional health benefits, too.

I don't see it mentioned in any of the lists of side effects, but I am convinced that the lack of estrogen in our brains affects cognitive abilities. I immediately started having trouble focusing and have become extremely forgetful. My oncologist now prescribes Concerta which helps a lot. I don't take it every day, only on days I especially need to be sharp. It's a mild dose and doesn't have the extreme side effects of amphetamines.

Before my mets diagnosis I would never have considered going to a naturopath, getting acupuncture or taking Chinese herbs. The side effects of Arimidex have persuaded me to look outside of Western medicine for answers. That side effect has turned out to be a blessing. All I have to do is mention a minor problem to my acupuncturist, and he comes up with a simple solution that no doctor would even know about. It has been an amazing journey, and I am really grateful to Arimidex that I am alive today and that I have learned so much as a result.

Laurie (@Turban_Diva) said...

Hi Susan, thanks so much for this information; it will be help to many other women who are going through the various, often unbearable side effects of Arimidex or similar meds. Going to the school for acupuncture treatments is a wonderful suggestion. I love acupuncture, and it can get quite costly.

I agree that all of this affects cognitive ability, what we not so affectionately call chemo-brain. Recovery from that is a long road back, especially when it coincides with menopause.

Thanks again for your comments, and I wish you continued good health.
Laurie

Debo said...

I was started on Tamoxifen in Feb 2013 after completing chemo. In October I ended up with a blood clot and was taken off of the Tamoxifen. I was then scheduled for surgery to remove my ovaries and started on Arimidex the first week of November. After about two weeks on Arimidex I started having severe back pain. I am not struggling with shoulder pain also. The pain in my shoulders feels like there is something burning inside when I reach for something or move my shoulder/arm in the "wrong" direction. I am also having issues with loss of strength in my arms. The pain in both my shoulders and back is not easing up and does not respond to Tylenol or ibuprofen. I do not like the way that prescription narcotics make me feel so I am at a loss as to what to do. My husband has urged me to call my oncologist's office in the morning to discuss this with her nurse since my next follow up isn't until February.

Laurie (@Turban_Diva) said...

Hi Debo, I'm so sorry to hear you are going through this, and yes, absolutely tell your doctor right away. Follow up visits are scheduled assuming everything is going smoothly on your case. So any time you have a problem in between, the doctor needs to know.

When someone has an adverse reaction to a drug, I think the doctors are supposed to report it to the FDA, but you can submit a complaint yourself at the FDA site:
http://www.fda.gov/safety/medwatch/howtoreport/ucm053074.htm
Warmest regards,
Laurie

Anonymous said...

Hi Laurie,
After taking Anastrozole (sp)? for 13 months, I had to give myself a break. My feet and ankles were so stiff, I was having trouble walking up and down stairs. And the fatigue and mental fog were just too much. I know that I should have called my oncologist right away, but one week turned into the next week. Next thing I know, I've been off of it for 2 months. Also a lot of back and shoulder pain, and actual tenderness of the back when I would sit down in a chair. I think when I couldn't bend down to pickup my dog or bend over to get clothes out of the dryer, enough was enough. I've also had shingles 2x in the last 6 months. Quality life over quantity, but I will feel terrible if cancer returns. So many mixed feelings, like a bit of a loser that I'm not tough enough to continue the treatment. Like you, I am not a fan of taking prescription medications.
I have an appointment with the Oncologist next week, so it will be interesting to hear what he has to say. He did say that I should avoid doing research on the internet. Hmmm...
Thanks for letting me vent! An I very much appreciate your blog...
Mary Beth

Laurie (@Turban_Diva) said...

Hi Mary Beth,
I'm amazed that you lasted so long with all these symptoms, and I appreciate your feedback. Every case is different, but I'm 6 years post chemo with no recurrence, and never did take more Arimidex or anything else. I would never suggest that choice is right for everyone; the best we can do is read up on as much information we can find, go through our own experience, and decide the next step. Even though the original post was in 2010, I still receive comments, so please keep us posted on your progress.
Warmest wishes,
Laurie

Paula said...

I was pleased that you responded to a comment today so I'll add my 2 cents. I've experienced many of the symptoms everyone mentioned so after telling my oncologist last week, she recommended stopping Arimidex for 2 wks. and then starting Aromasin. Today for the first time, I think I'm experiencing withdrawal symptoms from stopping Arimidex. This is all so troubling, and I haven't done enough research to learn about the percentage of reoccurrence with/without an aromatase inhibitor. My bc was stage 2A with no lymph node involvement. I'm not certain I am brave enough to stop the meds for fear of it coming back. But then again, I have become so limited in what I can do. Obviously, I have some research and deep thinking to do.

Laurie (@Turban_Diva) said...

Hi Paula,
Your comments are worth much more than 2 cents and I appreciate your note. My oncologist made a similar recommendation and you are wise to continue your research.

www.rxlist.com is a good place to find out uses and possible side effects of most medications.

I heard an article on NPR last week regarding what actual percent is applied to the likelihood of a side effect when it is reported to be "common" "rare" etc., since those are such vague terms. Those asked thought "common" was around 60% when in fact, “common” side effects are those that occur in 10% of those taking a med. "Rare" is one tenth of 1%. I didn't know it at the time I had to make the decision, but it would be interesting to see how frequently these occur if everyone having these severe side effects (or their doctors) actually reported them. Somewhere in this blog I posted a link on how to report adverse side effects to the FDA - not that I took the time to do it myself. I probably mistakenly assumed that when we report these things to our doctors, they report them to the FDA.

This is anecdotal, but I recently spoke to someone that quit a long career as a pharmaceutical rep because (according to her), reps are no longer able to report updated information and side effects of meds with doctors. Does this mean that the manufacturers themselves make up for that and are quick to pass this information to the doctors?

My experience with arimidex made me afraid to try any other similar med. But my cancer was stage 1; I may have felt differently if it had been more advanced. I'm not anti-drug when it's appropriate. It's not an easy decision when a med that is supposed to save your life significantly reduces the quality of your life.

Based on my risk factors, I shouldn't have gotten cancer in the first place. Oncotest showed borderline maybe I should do chemo, maybe not, and I made the choice to go through chemo & radiation. After that, it was determined I had a 5% risk of recurrence - that is, a 95% chance of survival. Arimidex would increase my chance of survival by about 10% - that is 10% of 5%, not 95% plus 10%. My personal choice was that it was not worth living in severe and constant pain for a .005 increase in my chance of survival.

I wish you the very best with your treatment; please keep us updated.
Warmest wishes,
Laurie

Anonymous said...

Hi Ladies, I am inspired by all of your comments, thankyou. I am now 1 month post Arimidex and a little nervous now that my lifeline has gone and I am flying solo. My big adventure started in December 2004, Stage 2 , lymphonode action and double mastectomy.So I'm 10 years healthy, chemo, radiation, 3 years Tamoxifen and 7 on Arimidex. This has meant 10 years of hot flushes, insomnia and achy joints. having said that the flushes and insomnia have reduced a lot and every now and then they come back (usually when I'm stressed) However, I have lost the ability to sleep for more than about 4 to 5 hours at a time, but so has all my naturally menopausal friends, So not sure that the drugs were all to blame. My biggest issue was achy hands - this increased over time and this past winter, I have worn gloves a lot and even worn them to bed and at working at my PC. This is pretty funny because I am a Queenslander. What got me through it all was lots and lots of exercise - it freed up my body and spirit and I am sure minimised my side effects. My oncologist congratulated me and said that this would be my last achy winter - YAY! So why am I here - does anyone know what life is like after Arimidex? Cheers, Cathie

Laurie (@Turban_Diva) said...

Hi Cathie,
Thanks so much for your input, and congrats on the 10 year mark! You are never flying solo - we are out here for support. I know what you mean about the sleep; it's always been a bit of a problem for me, worse with menopause and who knows what the meds did. I feel worse without sleep, so I'd rather take something to help than be like a zombie the next day.
Wishing you all the best!