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

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jul 10, 2012 12:46PM - edited Nov 15, 2017 07:07PM 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)
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Mar 15, 2019 01:15PM HikingLady wrote:

RE: supplements

I have post-chemo neuropathy in my hands, and some in my feet. I found out from my MO's office that the usual absorption and uptake of a lot of nutritional elements is destroyed or impeded by chemotherapy (taxanes are known culprits)--quite a few amino acids, for instance, which help our neurological 'messaging' system. This deficit causes chemotherapy-induced peripheral neuropathy, or CIPN. This is sometimes helped by adding back, at a high level, those particular elements. In my case, the list of things to take to MAYBE help with my peripheral neuropathy includes Vitamin D, a B Complex, L-glutamine, and Alpha Lipoic Acid.

So, I'm choosing to consider this a restoration, not a 'supplement,' since I'm trying to get things back into my body that usually are absorbed, but are now depleted. Poison broke my system, so I have to try to mitigate the collateral damage!

I realize that this is an AI discussion thread, but in my case, managing my post-chemo body is part of my story.

The AI is causing me almost no discomfort. I already slept kind of badly, and it's no worse. I already had achy joints, and they're a bit stiffer. I have gained five pounds, but also was kind of celebratory about food after chemo ended, so that might be something to blame on gluttony, not on the AI. No mood problems except general fury about having to deal with cancer and the treatments, lol, and my mental health is really stable. I exercise about one hour daily, and it helps with physical and mental health. Stronger muscles = happier joints. Happier joints = happier human.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 15, 2019 01:56PM BadLuck wrote:

Ladies - I was wondering if any of you were thinking of taking the 1mg Anastrozole every other day instead of a daily thing? Or can we cut them in half & only do a half every day? Does anyone know how long it stays in our system? These drugs are top on the list for being the nastiest when it comes to side effects. Also my oral surgeon is totally against me taking the Prolivia injections or any of the other osteo drugs that my OC wants me to endure while on AIs. He said the dangerous side effects are real & even years later in life after taking them, you can develop the jaw disease & holes in your mouth. No thanks! I'll take extra vitamin D & do the bone building & strengthening thing. I wonder how long it will take the drug industries & research to figure out what a big screw up it was to push these poisons on us & when they will come up with a safer & more effective way to combat these diseases. Are any of you also experiencing hair thinning/hair lose while taking AIs or tomaxaphen? I have really long hair that was once thick & now thin & Im ready to cut it

BadLuck Dx 6/15/2018, IDC: Mucinous, Left, 3cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/31/2018 Arimidex (anastrozole) Radiation Therapy 9/4/2018 Whole-breast: Breast
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Mar 15, 2019 03:25PM - edited Mar 15, 2019 05:53PM by pattycolumn

Good day! Thank you for all the input to this board! I asked for a hormone test before beginning Anastrozole; waiting for results. I decided to do half a pill a day for about three weeks to see if any SE; none so far! Glad I did because prescription for 30 days as I don't see OC until 45 days! Will go to 1 day soon. Take in morning after eating breakfast. Definitely learned to be my own advocate. BC recommends D3 (5000). I do take calcium at night. I will check with my dentist about taking Fosamax as test revealed ostopenia. Because of DES and PCOS, sometimes debilatating and constant hot flashes/night sweats all my life unless I took hormones which lead to BC...... quality of life as my BS understood. Lexapro (5 mg) for stress, etc. and hot flashes every other day since it raised my blood pressure. Trying acupuncture and horrible tasting (ginger helps) Chinese herbs now. Keeping all of you in my thoughts and prayers! Again, thank you for all the input; I have learned a lot. WIthout AI, 36% of reoccurence; with AI 14%. I am 58 and mostly healthy!

Dx 8/27/18, ILC, Right, Stage IIB, ER+/PR+, HER2- Double Mastecomy 11/16/18 Failed Reconstruction Expanders Removed 1/2/19 (Happy New Year to Me!) No chemo and no radiation

Dx 8/27/2018, ILC, Right, 4cm, Stage IIB, 1/1 nodes, ER+/PR+, HER2- Surgery 11/16/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 15, 2019 05:04PM HikingLady wrote:

BadLuck I will stick with daily dosing of my Anastrozole. That's the dosage that's studied, and I'm choosing to follow the NCCN guidelines-informed, evidence-based-medicine oncologist recommendations for treatment of my cancer.

It's always a choice between benefits and risks, when we accept any treatment. You're absolutely right, the side effects and long-term costs to our bodies might be/probably are dangerous and worrisome. For me, having a higher chance of dying of cancer is a worse choice. My recurrence risk is cut in half by taking an AI daily. It moves me to a 90%-ish cure rate; a much lower recurrence risk, statistically, with the AI than without it. I'll deal with all of the collateral damage, and of course there are no guarantees. I have Zometa infusions every 6 months to hold off bone loss. Because I have a better shot at not dying from this cancer by doing so, I'll take my AI, daily, as recommended.

I have almost no noticeable side effects. A little bit of stiffness when I sit too long, and it goes away when I start moving. My thumb joints are weaker. That's really it.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 15, 2019 05:43PM Mielli wrote:

Hello, my companions on the anastrozole journey. I have not posted for a long time, but often read the comments. I was on letrozole for 9 months, and my med onc switched me to anastrozole for the past 3 months. I did not want to change, as I had heard so many people (on here and elsewhere) have pretty much the same side effects on any of the AI's. I'm 67, consistently guessed to look in my 50's, and healthy (prior to BC). I am a strong believer in exercise, and I fast-walk 3.5 to 4.5 miles at least 3 times a week, and do other stretching and pool exercises as well. I have had the usual side effects: bone/joint/muscle pain (muscle pain is worse on anastrozole), mild and tolerable hot flashes, hair loss, more depression (on Lexapro), "good days" physically followed by massive fatigue which takes a while to recover from, and 5 pounds of extra fat all collecting around the middle which I have not had before. This past week, my PCP sent me to ER to rule out DVT in my calf. I did not have DVT, but they did lab tests, and I had rhabdomyolysis! Other labs were abnormal also, for the first time in my life. The shocker was that my already high cholesterol on letrozone had gone from 268 two months ago to 341 when I was tested after the overnight stay in the hospital! I am an RN, and I am not reassured by all of this! I cannot be given a statin now that I have had the rhabdo, so a Mediterranean diet was recommended. I'll try it. I've also read some scholarly articles reviewing the cognitive decline which occurs on AI's ("across the board," per the NP at my med onc's office). Now, also, I see that it may lead to earlier Alzheimer's disease also. It seems the brain needs estrogen also. With AI's, I have a 5% risk of recurrence. Without, it's 10%. That was totally worth it to me until now. Now, I'm not so sure. I do not want to try the 3rd AI, exemestane. I see the med onc next Thursday, the 21st. I wonder if they no longer see you if you stop AI's? I AM sorry if I am discouraging any of you.

Dx 12/18/2017, DCIS/ILC/IDC/IDC: Tubular, Right, <1cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 1/24/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 2/28/2018 Multi-catheter: Breast Hormonal Therapy 3/23/2018 Femara (letrozole)
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Mar 15, 2019 05:49PM Ingerp wrote:

HikingLady--that's interesting on the supplements. I just read so much about people taking tons of them (plus all of the articles about them having no proven benefit) but what you're saying makes sense. I'm sure we are starting from a deficit position so need some assistance just to get levels back to normal.

BadLuck--lots of us over on the Nov/Dec/Jan hormone therapy board are easing into the AI. It never occurred to me to try to cut them in half (my pills are really small!), although some have gone that route. I took mine every other day for about three weeks before starting full dose. I also haven't read about any MOs having a problem with the gentler on-ramp. I'm sure they're *much* more concerned that you eventually get to full dose and stay on it than when you do that.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Mar 15, 2019 10:51PM Stellawt57 wrote:

I’m diabetic & have taken metformin with Januvia is for many years with no side effects except weight loss! 👏Taco1946, thanks for sharing how letrozole has helped, Illadded it to my list of questions for my next oncology appt. next month.

Dx 8/14/2018, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/3/2018 Lumpectomy: Left; Lymph node removal: Underarm/Axillary; Reconstruction (left); Reconstruction (right) Hormonal Therapy 10/8/2018 Arimidex (anastrozole)
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Mar 17, 2019 04:42PM kcrd4766 wrote:

By the way, for anyone considering a statin, you may want to talk to your doctor about the side effects including how statins lower CoQ10 levels in the body (this may contribute to side effects).

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Mar 17, 2019 08:11PM CeliaC wrote:

I do take a 20 mg statin and also take CoQ10 supplementally. Good cholesterol is now higher than bad - may ask to go on 10 mg. For achy joints, I use Arnica Montana and Arnica cream, well known homeopathic remedies. Never even seem to need an OTC pain reliever. Joints, especiallly fingers much better on weekends, as not on the computer all day.

Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/20/2017 Whole-breast: Breast Hormonal Therapy 4/5/2017 Arimidex (anastrozole)
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Mar 17, 2019 09:15PM MamaOz wrote:

celia what statin are you on?


Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/20/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 8/8/2017 Hormonal Therapy Arimidex (anastrozole)
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Mar 17, 2019 11:35PM CeliaC wrote:

Atorvastatin (Lipitor generic). In bloodwork last month, HDL (good cholesterol) 71, LDL 61, Total 171. Also take BP meds, for many years.

Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/20/2017 Whole-breast: Breast Hormonal Therapy 4/5/2017 Arimidex (anastrozole)
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Mar 18, 2019 03:18PM Cherryi3 wrote:

Good morning! I’m posting about my 2 week break from anastrozole. I haven’t felt this well since pre diagnosis. The biggest thing is the lift from brain fog and getting good sleep. Went to orthopedic surgeon for unrelated issue I hadput on back burner. So turns out I have degenerative disk disease in cervical spine(I’m only 52!)very worried about starting letrozole and how this might make the problem worse. Any advice is appreciated!

Dx 10/1/2018, IDC, Right, 1cm, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 10/22/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast
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Mar 18, 2019 04:15PM HikingLady wrote:

Cherryi3 Thanks for posting this update. My MO has told me that a lot of unpleasant AI side effects go away if you do a 're-booting' like yours, of a small vacation from that medication. I wish that for you, for sure. I don't have the brain fog nor sleep issues; I've been on Anastrozole for 5 months. I did for a few weeks, and then it absolutely got better.

Loss of bone density is the issue with AI's--a different thing from the degeneration, which I'm so sorry you have, on top of everything else. Not fair, for sure. Be sure to ask both your orthopedic surgeon and your oncologist how bisphosphonates affect degenerative disk disease, and how both bone density and the ddd can be treated to help you. I'm given a Zometa infusion every 6 months to combat further loss of bone density from my AI. I hope there's a good solution to keep you comfortable!

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 18, 2019 05:21PM MamaOz wrote:

thanks! My 6 mo with my MO is coming up i 2 weeks

Will get blood work. My cholesterol has steadily climbed

The Mo wants me on something but my pcp and hesrt Dr disagree as my ratios are ok. But if its gone up again I may reconsider

So far I am being stubborn about not taking a. One med

I have osteopenia in most areas and 1 point from osteoporosis. Such a domino affect..

Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/20/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 8/8/2017 Hormonal Therapy Arimidex (anastrozole)
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Mar 18, 2019 08:58PM susansfca wrote:

Hi everyone! I rarely post or come to this website much anymore because I am out happily living my life. Im 4 years out from treatment , 2 years on Tamoxifen (too many side effects) 2 years on Arimidex. Im 54 and in the best shape of my life. I lift weights 5 times a week, cardio on my Peloton bike 5 times a week. Hike , walk, live my life. Light lymphedema in my left arm does not keep me from doing anything. i deal with the potential bone loss from Arimidex with excercise !nd supplements. I take I a calcium magnesium zinc combo called Bone Up, tumeric, vitamin D3 and Turkey Tail mushrooms. I eat well, rest , and roll with the menopause side effects which have gotten better over time. It gets better, keep active, eat well, dont drink too much, live your life.

Dx 6/9/2014, IDC, Left, 3cm, Stage IIB, Grade 2, 3/14 nodes, ER+/PR+, HER2- Chemotherapy 6/23/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Mar 19, 2019 03:51AM Cherryi3 wrote:

HikingLady, Thanks so much for the information and support. Dexa scan coming up in a few weeks, mri on spine, and more doctor appointments- seems like it never ends.

Susansfca, you are really rockin it! I’m getting up tomorrow and putting on my workout clothes! So nice to hear the positive.

Dx 10/1/2018, IDC, Right, 1cm, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 10/22/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast
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Mar 19, 2019 06:30AM Humblepeace wrote:

Hello Ladies,

I could use a little advice. I was on tamoxifen for 6 months. I had many of the usual SE's (dizziness, aching joints, back pain, rash, etc) which all eased up or stopped over the six months. Well, I had a hysterectomy 8 months ago and started Arimidex. Well the joint pain increased within the first couple of months. The back pain returned, but not daily. I also seem to have developed one finger on my left hand side that gets stuck every morning. However, my right hip and right knee are the most troublesome. The pain isn’t too bad in the morning but as the day goes by and I’m working and moving around it gets bad.I've had a full body scan about a year ago during my early months of tamoxifen which was clear. It did show some arthritis in my right hip and in my back. I'm also experiencing some dizzy spells about once a week, but a sense of lightheartedness frequently throughout the day like when on tamoxifen. I had a clear brain scan in November 2018. Anyone else have these side effects increase when switching to Arimidex from tamoxifen. Thanks for any information/advice.


Dx 3/2017, IDC, Right, Stage IIA, Grade 3, ER+ Hormonal Therapy 6/11/2018 Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast Chemotherapy Surgery Lymph node removal: Right; Mastectomy: Right
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Mar 19, 2019 01:13PM HikingLady wrote:

susansfca THANK YOU for this positive report! I love the 'living your life' attitude, and a really cheering survivor story. This is really inspiring and hopeful and helpful!

Humblepeace I already had some arthritis before starting Anastrozole. On it, I have slightly achier and stiffer joints. I feel better when I start moving again after sitting. It's best when I get my hour of daily exercise and worse if I don't. My thumb joints are weaker and don't work as well as they used to; I have some new jar-opening work-around techniques. I sometimes take an NSAID, which helps a lot with the mild pain and joint stiffness. I have an Rx for Meloxicam, which lasts for 24 hours. My experience being on the AI is that it makes my existing aging stuff just a bit more noticeable.

Your dizzy spells sound worrisome; be sure to report that issue to your triage nurse or whoever can advise or your MO. Try drinking a bunch more water? That has often helped me with various side effects. My nurse relatives say that as we get older, we don't get as thirsty as we used to, so we can easily get dehydrated, and that can affect all the body's systems.

The 'finger stuck' is something that I've read can happen--there are definitely joint problems that can arise with AI's, like "trigger finger," and there are a lot of solutions out there for that, like PT and surgical repair, which my PT friend assures me is less awful than it sounds---a simple solution, actually. He just had that surgery and it was an easy fix. So, be sure to report all these things, and keep advocating to your MO so you can find solutions to the problems that worsen your quality of life.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 19, 2019 01:52PM ajbclan wrote:

Susansfca- Loved your post- thank you for inspiring so many of us that need it! I saw the NP at my oncologists office last week. Her answer for everything was exercise lol. So I'm trying to kick it up by moving more. I know there's an exercise board, but maybe we need a separate one for those of us trying to jump start our moving!

Dx 8/9/16 with "multiple masses", chemo from 8/24/16 to 12/14/16- PCR. BMX w/TE: 1/31/2017; Exchange-9/18/17. Dealt with blood clot, cellulitis and another infection. Variance on PALB2 gene. Dx 8/9/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2- Chemotherapy 8/24/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/31/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 12/19/2018 Arimidex (anastrozole)
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Mar 19, 2019 03:49PM L8Blmr wrote:

Suansfca, A big Thank You for the enCOURAGEment - so inspirational for all of us. I love to celebrate stories like yours with my family and friends; it keeps me on track to where I want to be. And I totally agree, we must all find the best way of living our new lives. Focusing on the positive, minimizing the negative. Here is to everyone's Spring renewal for a better way of life!

L8Blmr Dx 11/2/2017, IDC: Papillary, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Surgery 12/15/2017 Mastectomy: Left, Right Chemotherapy 1/16/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/23/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 5/1/2018 Arimidex (anastrozole)
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Mar 21, 2019 06:41PM BlueGirlRedState wrote:

BadLuck - it really is a "catch 22" with BC, the treatments/drugs used on BC and the drugs used to counteract SEs from those drugs. Check this forum for those who had good results switching generics or switching to the brand name for Anastrozole/arimidex. I did get an Rx for the brand name, and even got a 30 dose bottle. It had been several months since I had taken anything, and my fingers were feeling better, so I did not try it. A few months later I asked my oncologist about Tamoxifen, even though I was way past menopause. She gave me an Rx and I have been using it. Whether or not it is doing any good, who knows. There do not seem to be any metrics for either AIs or tamoxifen, just studies that X percent of those taking it for Y years had Z percent less recurrence. I did get an increase in leg cramping (calf muscles), with tamoxifen, sometimes quite painful. The magnesium glycinate and potassium seem to keep that at bay now.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinal nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better.

Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while

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Mar 21, 2019 08:40PM HikingLady wrote:

BlueGirlRedState RE: Tamoxifen vs AI's

My oncologist told me that for me, the AI lowers my recurrence risk by 50%. It moves me to a 90% chance of being cured/10% recurrence risk. If I can't tolerate the AI, and have to switch to Tamoxifen, the benefit is a 40% reduction of risk of recurrence. I'm not sure if that's just me and my diagnosis or whether that protective % benefit is the same for everyone, but the idea was that Tamoxifen also has a lot of benefit, and can be a good option for someone post-menopause who can't continue on the AI. So, you're probably very protected. I took Tamoxifen for 5 years after my 2003 breast cancer, and I didn't have any difficult side effects.

I am doing fine on Anastrozole. Some joint stiffness. Very infrequent and slight hot flashes. No pain. Weak thumb joints, so I'm babying them. I exercise daily, and the more muscle tone I have, the less complaining from my joints.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 21, 2019 11:07PM Denise-G wrote:

I've been on Anastrozole for 6.5 years and each year the side effects get less. I would say the SEs now are 65 to 70% less than they were early on. The first two years were really rough, I'm not going to downplay that as some days I could hardly walk. But I knew i had to do it to cut my risk by 50% which is what my MO told me in my case. I am now at 7.5 years out.

My sister has been on Anastrozole for 4 years, and she has less Side effects as well as time goes on. Our MO told both of us - 10 years or maybe the rest of your lives as long as your bones hold out. We are full of gratitude every day that we can cut our risks by this drug. We can predict the weather and have joint pain, but to be honest, I have learned to live with it in the joy of surviving a very aggressive cancer. I was only able to take Herceptin for 3 months due to heart issues, so I truly than God every night when I take the drug.

As I side note, I have a friend whose mom is 86 and just diagnosed with a tumor the size of an orange, and cannot do chemo. The tumor is too big for surgery at this point. Her MO started her on Anastrozole to try and shrink it enough for surgery. Within ONE MONTH, the tumor had shrunk 25% just by taking Anastrozole! That was absolutely shocking to me!




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www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/23/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/27/2011 AC + T (Taxol) Targeted Therapy 2/28/2012 Herceptin (trastuzumab) Hormonal Therapy 10/11/2012 Arimidex (anastrozole)
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Mar 21, 2019 11:10PM Denise-G wrote:

I've been on Anastrozole for 6.5 years and each year the side effects get less. I would say the SEs now are 65 to 70% less than they were early on. The first two years were really rough, I'm not going to downplay that as some days I could hardly walk. But I knew i had to do it to cut my risk by 50% which is what my MO told me in my case. I am now at 7.5 years out.

My sister has been on Anastrozole for 4 years, and she has less Side effects as well as time goes on. Our MO told both of us - 10 years or maybe the rest of your lives as long as your bones hold out. We are full of gratitude every day that we can cut our risks by this drug. We can predict the weather and have joint pain, but to be honest, I have learned to live with it in the joy of surviving a very aggressive cancer. I was only able to take Herceptin for 3 months due to heart issues, so I truly than God every night when I take the drug.

As I side note, I have a friend whose mom is 86 and just diagnosed with BC has a tumor the size of an orange, and cannot do chemo. The tumor is too big for surgery at this point. Her MO started her on Anastrozole to try and shrink it enough for surgery. Within ONE MONTH, the tumor had shrunk 25% just by taking Anastrozole! That was absolutely shocking to me!




.




www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/23/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/27/2011 AC + T (Taxol) Targeted Therapy 2/28/2012 Herceptin (trastuzumab) Hormonal Therapy 10/11/2012 Arimidex (anastrozole)
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Mar 22, 2019 12:00AM bennybear wrote:

I am one who thought I was doing ok on Anastrozole, but due to joint issues, hair loss and a fractured elbow I stopped it after three months. I was switched to Exemestane and added in Fosamax. Last appointment I was told in my case there is onlya 2 percent improvement with the AIs.

Got my bone density results and they have dropped 10% after only 6 months on these drugs. I now have osteoporosis and am very upset, I really think each one of us needs to be given a personal risk benefit analysis so we can make the best decision for our bodies.

Basically I have doubled my fracture risk not to mention all the other side effects for 2% improvement in recurrence rates. Not sure it’s worth it for Me!

Dx 3/25/2010, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 6/6/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Mar 22, 2019 12:49AM - edited Mar 22, 2019 12:56AM by MamaOz

thanks denise-g

Thats uplifting and huge news about your friends mother!!

Perhaps one day the AI can replace chemo!!

Im struggling along. I take Arimidex

My joints ache, i get flu like symptoms that come and go

Im a point from osteoporosis, and my cholesterol is climbing

So far i have refused the bone meds, heart dr is monitoring but as yet doesnt want me on a statin

I take the arimidex first thing in morning

I try to exersize , walk , take vit D , algaecal, probiotic,

multi and veggie juices. I have other supplement I fit in when I remember..

Anyway Im encouraged by the news it shrunk the tumor..



Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/20/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 8/8/2017 Hormonal Therapy Arimidex (anastrozole)
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Mar 23, 2019 11:02PM CBK wrote:

Personally I think chemo was a walk in the park (minus the hair loss) compared to Arimidex!

It may be that I’m a bit younger and was peri-menopausal and had my ovaries yanked then placed on Arimidex 2 weeks later. Ouch! Even my new oncologist I just brought on board winced at that! The estrogen drop is just off the charts in these scenarios!

One week Arimidex- free; what will it bring?



Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant
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Mar 24, 2019 12:28AM IamNancy wrote:

I am having brain fog but cannot remember what does AI stand for?

oncotype 25 Dx 11/2012, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/10/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/4/2013 Lumpectomy: Right Chemotherapy 2/12/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/13/2013 Breast Hormonal Therapy 7/7/2013 Arimidex (anastrozole)
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Mar 24, 2019 01:36AM MACTAZ wrote:

Iamnancy, aromatase inhibitors. I understand.

Dx 8/14/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Dx 8/14/2018, IDC, Right, 2cm, Stage IB, Grade 3, ER+/PR+, HER2+ Chemotherapy 8/29/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/29/2018 Herceptin (trastuzumab) Targeted Therapy 8/30/2018 Perjeta (pertuzumab) Dx 9/19/2018, DCIS, Right, <1cm, Stage 0, Grade 3 Targeted Therapy 1/2/2019 Perjeta (pertuzumab) Targeted Therapy 1/2/2019 Herceptin (trastuzumab) Surgery 1/28/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 2/25/2019 Arimidex (anastrozole) Surgery 4/25/2019 Reconstruction (right): Nipple tattoo, Silicone implant
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Mar 26, 2019 05:31AM Ane5TT wrote:

I have just finished 5yrs taking of Arimidex have been clear of breast cancer for the 5yrs I didn't have CHEMO, only Radio, Have only a few symptoms stiff joints but the heated pool helped a lot , I am now told i can stop taking arimidex , but i do have the option just is a ? i need to think about as I didn't have any glands removed they said its ok to stop the medication. There seems to before and against coming off the medication .

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