Topic: For Arimidex (Anastrozole) users, new, past, and ongoing

Forum: Hormonal Therapy - Before, During, and After — This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Jul 10, 2012 07:46AM - edited Nov 15, 2017 02:07PM by moderators

Posted on: Jul 10, 2012 07:46AM - edited Nov 15, 2017 02:07PM by moderators

nancyjac wrote:

I found a couple of older threads about Arimidex, but they covered a large time span with a gazillion posts, so I thought I would start a new thread for Arimidex/Anastrozole users.

I am starting on Anastrozole today. Plan is to take it for 5 years, possibly longer. I already have osteopenia and osteoarthritis (limited to one knee at this point), so I am most concerned about the bone and joint side effects. I'm already frustrated by finally having some energy and stamina back after chemo and radiation, but now I have trouble exercising due to the bum knee. I'm concerned about that getting to be even more of a problem on the Anastrozole.

Please share you experiences, side effects, questions etc. about Armidex/Anastrozole here.

Edited by Mods to add content from the main Breastcancer.org site on Arimidex: Benefits, Side Effects and More

Dx 11/2011, IBC, Stage IIIB, Grade 2, ER+/PR+, HER2+ Targeted Therapy 12/7/2011 Herceptin (trastuzumab) Chemotherapy 12/7/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2012 Mastectomy: Left, Right Surgery 4/17/2012 Mastectomy: Left Surgery 4/19/2012 Mastectomy: Left Radiation Therapy 5/29/2012 Breast, Lymph nodes, Bone Hormonal Therapy 7/10/2012 Arimidex (anastrozole)
Log in to post a reply

Page 1 of 1,805 (18,041 results)

Log in to post a reply

Jul 10, 2012 09:15AM dngdonnelly wrote:

I've been on Anastrozole since February of this year (only 4 more years to go!!). I have the hot flashes and night sweats but nothing unbearable. What has suddenly gotten worse is the joint pain in my feet and thumbs. It's only bad when I first get up in the morning, but after I get up and moving, it gets better. Luckily it hasn't stopped me from working out. I didn't have any of the weight gain that other people have talked about; actually, I have lost 10 pounds since I started the medicine. I would also like to hear what people do to help deal with the joint pain and hot flashes. I did hear from someone who takes Potassium to help with the side effects, and even though she swears by it, my oncologist says he has never heard of that. My thoughts are with you, and I hope the side effects are OK for you!!

Gina Dx 5/4/2011, ILC, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 6/22/2011 Mastectomy: Right Surgery 12/7/2011 Reconstruction (right): Free TRAM flap Hormonal Therapy 3/14/2012 Arimidex (anastrozole)
Log in to post a reply

Jul 10, 2012 09:34AM nancyjac wrote:

Hi Gina.  Thanks for sharing your experience.  My onc did tell me that the joint issues tend to be worst first thing in the morning when our bodies have basically been inactive all night sleeping.  I tend to get up several times a night to pee, so thinking of somehow incorporating just a minute or so of some sort of stretching to see if that helps when I first get up in the morning.  Of course I am still half asleep and on total auto-pilot when I get up to pee, so may be hard to incorporate anything new in that state.

Glad to hear that you haven't had the weight gain SE.  My weight was at a good place for me before  DX and stayed pretty stable during chemo (I lost and regained the same 5 pounds every 3 week cycle).  But then just after chemo but before surgery I stopped smoking and have packed on some pounds due to that and because I hadn't been exercising much due to fatigue and then the bum knee.  At this point I need to lose at least 20 lbs.....maybe even 30..and certainly not gain any more.

 Do you mind me asking how old you are?  In your photo you look way too young to be on a post menopausal AI.

Dx 11/2011, IBC, Stage IIIB, Grade 2, ER+/PR+, HER2+ Targeted Therapy 12/7/2011 Herceptin (trastuzumab) Chemotherapy 12/7/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2012 Mastectomy: Left, Right Surgery 4/17/2012 Mastectomy: Left Surgery 4/19/2012 Mastectomy: Left Radiation Therapy 5/29/2012 Breast, Lymph nodes, Bone Hormonal Therapy 7/10/2012 Arimidex (anastrozole)
Log in to post a reply

Jul 10, 2012 10:03AM specialk wrote:

I just started Arimidex a couple of weeks ago.  I had been on Femara since the end of last summer but I was experiencing more aching than I did on chemo.  I also developed a trigger thumb suddenly after about the first six months.  I did a washout period of 2-3 weeks, then switched over.  I am finding less joint pain on Arimidex - I had been having trouble getting out of the car and taking the first few steps, and also standing up after sitting for any period of time.  At the same time I stopped eating gluten and I am wondering if this has been helping also.  I had read on the other threads that some have noticed less joint pain when they did this.  I am walking 4 miles a day with problems - once I am moving my joints don't bother me.  When I first get out of bed, probably the first 20 steps or so I am very stiff.  What time of day do you take your AI?

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
Log in to post a reply

Jul 10, 2012 10:50AM nancyjac wrote:

Wow SpecialK.....another one that looks way too young to be taking AI.  Glad to hear you are doing well on Arimidex so far, especially with the less joint pain.  I'd love to get back to walking 3-4 miles a day.  Hopefully I can work back up to that.  I got a cortisone shot for my knee yesterday and today it is feeling much better.

Dx 11/2011, IBC, Stage IIIB, Grade 2, ER+/PR+, HER2+ Targeted Therapy 12/7/2011 Herceptin (trastuzumab) Chemotherapy 12/7/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2012 Mastectomy: Left, Right Surgery 4/17/2012 Mastectomy: Left Surgery 4/19/2012 Mastectomy: Left Radiation Therapy 5/29/2012 Breast, Lymph nodes, Bone Hormonal Therapy 7/10/2012 Arimidex (anastrozole)
Log in to post a reply

Jul 10, 2012 11:09AM Lee64 wrote:

Thanks for starting a new thread on this topic. I have been on Anastrozole since Sept. of 2011 and have not experienced any physical side effects. However, my blood sugar on subsequent blood tests has been elevated for no apparent reason. I am not overweight and I have a good diet. I have my next check-up on Monday so will find out then if it continues to rise.

Dx 11/5/2010, IDC, 3cm, Stage IIB, 2/6 nodes, ER+/PR+, HER2-
Log in to post a reply

Jul 10, 2012 11:13AM specialk wrote:

nancyjac - thanks!  I am actually in my mid-50's.  I had a complete hyst/ooph 11 years ago so I have been menopausal for a long time!  I am also osteopenic - had been stable for about ten years, but worsened at every checkpoint on my last bone density.  I am now receiving Prolia injections every six months - next one is due in August.  I have not had any SE from those, and hopefully it is working to prevent any further loss, and rebuild the loss I have.  My MO said this could take up to two years.  Hope your knee improves enough to let you start putting in the mileage.  The trigger thumb I have can be treated with a cortisone injection as well, but I am giving it some time to see if it resolves on its own.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
Log in to post a reply

Jul 10, 2012 12:50PM blessings2011 wrote:

nancyjac - thank you for starting this new thread. I just sit here and watch as the posts on the other one climb to almost 5,000 - and I have to tell you it's intimidating.

I got my Rx for Anastrozole on January 3rd of this year. I haven't opened it yet.

My MO said I could wait til I was off the post-surgery/TE fills pain meds.

I gave her a gazillion reasons why 1) I didn't NEED this drug, and 2) was AFRAID of this drug.

After my BMX, my risk factor for recurrence was 1% - 2%.

I had mostly DCIS, with a microinvasion of IDC: one area that was 1.5mm (half a grain of rice) and .5 mm (a grain of salt). Neither one showed up in my final pathology report. They said the core-needle biopsy must have gotten it all.

I was also 14 years post-menopausal, and I'd had a hysterectomy, so there was no way I had any excess estrogen floating around. She kindly pointed out that estrogen was continuing to be produced not only in the adrenal glands, but also in body fat, of which I had plenty.

At that point I made the decision to enter a medically-supervised weight loss program (Optifast) and am almost at my goal. So far I've lost almost 50 pounds. The MO says this has further reduced my risk factor by 23%. So now it's at .77%? Less than one percent?

I explained that I had so many other medical issues going on in my life, especially osteopenia, degenerative disk disease, spinal stenosis, and fibromyalgia. It was already difficult for me to get out of bed in the morning.....and despite going through a ten week chronic pain management program, there were still days when I needed Vicodin during a particularly nasty fibro flare.

She mentioned that not all women get side effects. (Hard to imagine, while watching those posts on the other thread add up every day...) I also kept hearing my mom's voice (a 26 year BC survivor when she passed at the age of 87) in my head, saying "Honey, you won't know until you try." I also read many, many comments from Stage IV women who wished that the AIs were an option for them.

So I told the MO that I would be willing to try the Anastrozole, but that I would be keeping careful records of any side effects. She understood. I said I MIGHT try another drug should the SEs be debilitating. She understood. I said that my QOL was more important to me, and that there may come a time when I said I wanted to stop completely. She agreed.

The only remaining issue is the fact that she also wants to put me on one of the bone-building drugs. THAT is one thing that I will probably refuse, especially with the current research showing so many problems....

Here is something that has really surprised me: SpecialK mentioned this in her post.....since beginning this diet on March 22nd, my fibromyalgia and joint pain has diminished considerably!

I don't think it's from weight loss or exercise alone, even though I am now able to go to the gym, water aerobics, ride my bike, and walk a few miles a day.

I believe it was getting off the white sugar, white flour, and GLUTEN. (Optifast is gluten-free.) I always wanted to go on an elimination diet to see if it would have an effect, but it was too hard - waaaaaaaa - and now I've been gluten-free for four months. I won't be adding that back into my diet.

I got a reprieve on the Anastrozole while I was on Optifast. This week we slowly start adding real food back into the diet for the next 14 weeks. I see the MO in September. I have a feeling I know what we'll be talking about....Undecided

Dx 9/15/2011, IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 12/5/2011 Lymph node removal; Lymph node removal (Left); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Surgery 8/22/2012 Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 9/5/2012 Arimidex (anastrozole) Hormonal Therapy 10/22/2013 Femara (letrozole) Hormonal Therapy 10/1/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC: Papillary, Left, <1, Stage IA, Grade 1, ER+/PR+, HER2-
Log in to post a reply

Jul 10, 2012 01:33PM nancyjac wrote:

Fascinating story Blessings, and sounds like it has been very positive for the most part.  Please keep us posted on how it is going.

Dx 11/2011, IBC, Stage IIIB, Grade 2, ER+/PR+, HER2+ Targeted Therapy 12/7/2011 Herceptin (trastuzumab) Chemotherapy 12/7/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2012 Mastectomy: Left, Right Surgery 4/17/2012 Mastectomy: Left Surgery 4/19/2012 Mastectomy: Left Radiation Therapy 5/29/2012 Breast, Lymph nodes, Bone Hormonal Therapy 7/10/2012 Arimidex (anastrozole)
Log in to post a reply

Jul 10, 2012 06:55PM - edited Jul 10, 2012 08:16PM by Snoopsmom

I'm in my third month of Anastrazole and have had absolutely NO side effects! I keep waiting for something to show up, but so far....nada. No fatigue, no weight gain, no joint pain, no nuttin'! My MO said MOST women have no or very minor SEs. I am MANY years post-menopausal (age 65) and my bone scan was fine so I'm not concerned about bone loss at this point. I'd rather start out taking something knowing that I can quit it if necessary.

Diagnosis: 12/14/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-, Oncotype DX = 9 Lumpectomy 1/19/12, Rads 28+6, Arimidex 5/8/12
Log in to post a reply

Jul 10, 2012 08:04PM nancyjac wrote:

That is great to hear Snoopsmom.  Please continue to keep up posted.

Dx 11/2011, IBC, Stage IIIB, Grade 2, ER+/PR+, HER2+ Targeted Therapy 12/7/2011 Herceptin (trastuzumab) Chemotherapy 12/7/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/10/2012 Mastectomy: Left, Right Surgery 4/17/2012 Mastectomy: Left Surgery 4/19/2012 Mastectomy: Left Radiation Therapy 5/29/2012 Breast, Lymph nodes, Bone Hormonal Therapy 7/10/2012 Arimidex (anastrozole)

Page 1 of 1,805 (18,041 results)

Scroll to top button