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

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

Hormonal therapy medicines can be used to lower the risk of early-stage hormone-receptor-positive breast cancer from coming back, shrink or slow the growth of advanced-stage or metastatic hormone-receptor-positive breast cancers, and lower the risk of developing breast cancer in certain women who are at high risk. They work by lowering the amount of estrogen in the body or by blocking the effect of estrogen on breast cancer cells.

There are several hormonal therapy medicines, including, tamoxifen (Nolvadex, Soltamox), Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole).

Hormonal therapy is usually prescribed for multiple years. Common side effects include hot flashes, joint pain, fatigue, and bone thinning.

Note: This is a safe place to share YOUR experience, not to be influenced or influence others. Please contact your doctor about any questions or concerns you may have if you are currently taking hormonal therapy.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

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)
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Jun 28, 2020 06:03PM CBK wrote:

Ladies-

I need help with something I can’t seem to conquer.

I have been on anastrozole 2 years and change. I have taken 2 vacations from the pill to get a handle on my dizziness I associate with it. Both vacations delivered the same odd results.

Dizziness didn’t really subside off the meds but some other side effects did. So I go back on Arimidex (just a few days now)and dizziness is almost all gone now. This is the second time this has happened.

Has anyone else had a similar experience or have any insight on this?

Thank you!!!

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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Jun 29, 2020 09:47AM CindyNY wrote:

CBK- you and I have been on Anastrozole about the same length of time. I have not had any dizzines, and I'm sorry you have. Someone should chime in soon with their experiences. Best of luck to you.

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/13/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)
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Jun 29, 2020 02:12PM BlueGirlRedState wrote:

CBK - I have not had dizziness with Arimidex (brand name Anastrozole), but it seems like everyone has different SEs. It sounds like you are not having dizziness now, which is good. With different drug combinations, supplement, lifestyles, cancers..... it gets very hard to sort out. Have you noticed any changes in BP? Sometimes mine drops from about 115/65 to about 90/50, and then I feel light headed. Never know if it is one of the drugs (including the BP drug), drug interaction, or jus one of those days.

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Jun 30, 2020 05:28AM CBK wrote:

BluegirlRedstate-

Anastrozole I believe elevates my BP significantly, when I’m off, it’s in completely normal range. So I can’t speak to what you are experiencing, although it would make sense for what you are describing for light-headedness to follow such a drop.

I imagine this is frustrating to you as well and I hope you can resolve.

CindyNY- glad to hear you are doing well on the pill!

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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Jun 30, 2020 05:57PM CindyNY wrote:

CBK - I have a love/hate relationship with this little white pill. LOL. I love that it helps keep cancer at bay. I hate what is does to my body. I'm on generic Fosamax because of the osteopenia in my hip from Anastrozole. Its given me plenty of SE, just not the dizziness you're experiencing. 2 years 9 months to go, onward!

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/13/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)
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Jun 30, 2020 05:59PM berries wrote:

I have only been on Anastrozole for 2 months. Did anyone have side effects starting at 2 months? I feel a lot of hip pain and tightness.

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
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Jun 30, 2020 08:09PM Laurencl wrote:

Hi Berries!

I’ve been on for about 5 months or so. For me, it’s knee pain and stiffness. I just keep drinking water and keep moving. I find it’s worse if I sit too much

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Jul 1, 2020 01:51PM BlueGirlRedState wrote:

berries - the first time I took anastrozole, SE joint stiffness and locking finges almost immediate. So I quit after a couple of months. After fingers started clearing up I took tamoxifen. Well.... with a new cancer(my MO thinks it is new vs recurrence) I'm on Ibrance and brand name Arimidex. For the first few months no joint stiffness. Joint stiffness has returned and one finger locks up. Not as bad as the generic, but there. SEs, managing them, your MO's experience/knowledge are highly variable. I am trying acupuncture, and I think it helps with the stiffness. More recently trying electro-stim with the acupuncture. Just wish I could do it weeky to get a real sense of it.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

2016 ER+ left breast. 4 rounds TC Aug-Oct 2016 prior surgery. Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. MO said chemo did not do much to the tumor. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

6/18/2019 Noticed Swelling in R-arm. Suspected lymohedema or clot. Various Imaging and biopsy confirned turmor 9/2019. Started Ibrance and Arimidex. Tumor shrunk 2.5 cm Sept 2019 to 7 mm April 2020. Hope next scan shows that it has shrunk to oblivion



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Jul 1, 2020 03:21PM berries wrote:

I'm actually having a lot of knee pain also! I am a runner (also 35 years old), so I thought maybe that was it, but they are sometimes shooting pains down to my knee. Is that normal? Just a little worried that I don't know if they are aches and pains caused by the medication.... or something else I should be more worried about :(


Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
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Jul 1, 2020 03:33PM Laurencl wrote:

Hey Berries!

I’m older then you, already had some trouble with the knee (arthritis according to the PET scan when I was diagnosed in 1/19). After being on the AI it has gotten worse particularly when I sit too long and during the night. Bone pain is an SE of AIs, hard to say what is “normal”. Bring all your concerns to your MO. Keep moving

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Jul 2, 2020 02:10PM BlueGirlRedState wrote:

Definitely talk about knee pain with your MO. If you are able to consult a PT without having a referal, you might want to set that up as well. If not, ask the MO for a referal. It may or may not be associated with meds or cancer. 2 years ago my left shoulder screamed when I tried to do one weight lifting exercise, the other upper body were just fine. I had not lifted weights for about 3 weeks, exercises and weights were the same, I had missed a couple of weeks in the past here and there.without any problems. After a couple of months of not getting better, I consulted at PT. She diagnosed a "frozen shoulder" and gave me exercises. With each visit she added more reps and maybe another exercise. After a couple of months the shoulder healed. So I added the exericses as part of regular stretching and make the right arm/shoulder do them as well. Hope your knee clears up and lets you start running again.

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Jul 2, 2020 02:23PM berries wrote:

Thanks for your input all!

It actually doesn't prevent me from running much at all. None of my "aches" do. I think I am highly sensitive to any twinge. I have no pain most of the time, but sometimes I'll get an dull ache that last a little while or achiness in my joints. This is all so stressful!

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
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Jul 3, 2020 12:27PM Anx789 wrote:

Hello everybody, I hope you are all staying safe. I have been on Anastrozole for six months now. My SE are gaining weight, worsening of existing body/joint pain pre-bc, I have very minor swelling of my right leg (per my primary not blood clot since not getting worst or better,) lump on my right neck (per my MO, its not lymph nodes) and trouble sleeping at night at the beginning. Over all the SE are manageable.

I am concern about the new pain on my lower left side of my back rib cage. I noticed this pain two months ago when I try to carry something on my side. This area only hurts when I pressed on it or put pressure on it. It must be a bone pain since its not tender to touch, you have to press the bone to feel the pain. No pain with movement either. My MO is not so concerned. Do any of you have experience this kind of pain in any part of your body.

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC)
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Jul 3, 2020 12:42PM HikingLady wrote:

CBK To add to the suggestions and thoughts above....my MO specifically said that the 're-set' after going off on a 2-week vacation from the AI and resuming usually helps, but you never know exactly which stuff will improve and when, so that might be what you've experienced. Unpredictable results. But, if the dizziness is gone, yay!

I've had BPPV and resolved it with the famous maneuvers. Not related to my AI.

While on my AI, I find myself to need to hydrate about 2x as much as before. I don't get a thirst cue to match this. I need to drink about twice as much water every day as before my AI, and much more than I'm thirsty for, to keep feeling okay. Whenever I slack off on drinking a lot of water all day long, I get dizzy, constipated, and generally fatigued. I have no idea whether this experience is exactly the same for other people, but I've heard hydration mentioned on this thread, so it might be similar for others. When I do physical activity, such as take a 30 min brisk walk, or gardening, biking, x-c skiing, or anything strenuous, I have to drink 8 oz of water every 30 minutes or so, or I feel like crap.

I didn't have this experience before being on my AI. Of course, there's no way to know whether it's due to being 60+ or whether it's due to being on an AI. Anyway, I feel perfectly fine if I drink a lot of water all day long, so this is manageable.

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 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 3, 2020 12:45PM BlueGirlRedState wrote:

Anxious789 - I do get periodic aches/twinges in different places that I do not associate with "a did", injury etc. Since anastrozole/arimidex can cause/contribute, any that perisist, I get concerned about. I do seem to injure more easily as well as heal more slowly. Probably mostly age, but I'm sure cancer and drugs contribute. I take brand name Arimidex. I think the SEs are less and came on more slowly than generic anastrozole, but they are there (stiffness in hands, a locking finger, clumsiness). I'm not due for a bone scan for another year of so, but am concerned what it might be doing to my bones. If you log food/activity/how you feel/trouble sleeping, you might want to note if anything seems to bring it on. I've been meaining to do this with IBrance, since some days are definitely better than others. Stay active, hydrated, stretch. Looking forward to when gyms can really open up and get into yoga, quigong.

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Jul 3, 2020 04:59PM CBK wrote:

Hikinglady

Thank you for that information. No doubt this pill dries you out so stands to reason you should take in all the hydration you can get. I’m a terrible water drinker. So your point is well-taken.

Thank you again for your thoughts.

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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Jul 3, 2020 08:17PM Anx789 wrote:

BluegirlRedstate - Thank you very muchfor your input, it might be a sprain/strain that’s is slowly healing. I sleep on my side, hopefully that’s the culprit.

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC)
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Jul 4, 2020 11:22AM - edited Jul 4, 2020 05:45PM by HikingLady

This Post was deleted by HikingLady.
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 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 4, 2020 05:51PM HikingLady wrote:

BlueGirlRedState I noticed that you mentioned bone meds & AI. If you feel comfortable putting your DX and TX info settings to Public, we can see them below your posts.

I had a diagnoses of Osteopenia before starting my AI. In May of 2018 I had my first DEXAScan, where that was seen, and then I started my AI in November that year, after BMX and chemo were finished. I have been getting Zometa (Zoladex) infusions every 6 months to mitigate the bone loss that AI's often cause, since I started with already having some osteopenia. Zometa offers some protection against bone mets, which is an added benefit. As a breast cancer patient, I qualify for (expensive) Zometa as my bis-phosphonate.

It takes an hour or so for the infusion twice a year, and before I have it, I get blood work done, and MO meets with me. He's checking overall metabolic things, and blood chem panel, to be sure that organs are doing okay, since Zometa can be hard to metabolize. I always feel like crap the day after, very tired and sluggish and icky, but for JUST one day, and I drink a lot of water and rest, and feel just fine the day after that.

Last week, I went for a follow-up DEXAScan, to see if the Zometa is working. YES!!!! My bone density has improved. I'm still in the osteopenia range, but significant improvement was seen on two measurements, and that means So Far, So Good on that issue.

By the way, here's how I managed safety and exposure, in these Covid times, for necessary medical treatments. Of course, I wore a mask, but also a face shield, for going into the hospital imaging center.

Made me feel safer than just a mask, since there are tight quarters for that procedure. This link below is similar to the one I have, although mine has a band w/ velcro for fastening around the head, but it's this same idea, and fits over glasses. My doctors are recommending this for being anyplace indoors with shared air space, such as grocery shopping or a doctor's appointment in person, etc. I'm in the "vulnerable & high-risk" category for COVID because of age & a lung issue, so I'm being extremely careful.

Clear Face Shield Link



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 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 4, 2020 07:29PM HikingLady wrote:

In my post above, this image didn't show up online, although my end showed that it was loaded. I'll see if it works this time. Also, editing did not work for some reason, so I'll start over!

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 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 4, 2020 07:40PM BlueGirlRedState wrote:

Hiking lady - it looks like you use a shield as well as wearing a mask? Do you still need a mask with the shield. Are they one time use/disposable or can you rinse them off. I'm thinking they might offer more protection than a mask and would not fog up glasses.

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Jul 4, 2020 10:18PM HikingLady wrote:

This article alerted me to the shield idea, and then my doctors also started recommending them

https://www.nytimes.com/2020/05/24/health/coronavirus-face-shields.html

I took a plain one and added velcro strips to the fastening strap, so it's easy to adjust. It's very comfortable. The thick foam makes it work fine over glasses. Mine is 'anti-fog PET' and after I use it, I wash it with warm dish soap and water, and let it sit to dry. I don't use it every day, but if I did need to, I'd just have several and rotate them. Most of these wash pretty easily. The lower quality ones have terrible clarity. I suspect that certain chemicals would degrade the plastic. Mine wraps around my face and is long---feels like a safe way to be in a room with a lot of other humans.

I wear my shield over a face mask. I think that in some cases, just the shield would be pretty good protection. I sewed face masks with a moldable wire (2.5" of pipe cleaner) in the top. Since it's snug around my nose, my mask doesn't fog my glasses.

Here's one source---they're easy to find online. I sent away for strips of adhesive-backed 1" velcro to customize the fit better.

https://www.namebadgeproductions.com/product/6073/badger-transparent-shield?gclid=Cj0KCQjw0YD4BRD2ARIsAHwmKVmQ7hupR3VJBLhFpF6n7JEgpA8SkeO_utHI9JjH7UDZiZGgqKCYYesaAsujEALw_wcB

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 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 10, 2020 01:35PM Krose53 wrote:

I'm feeling discouraged. I'm on non generic Arimidex. It's my 3rd aromatase inhibitor. For the first 3 months I felt so great! Very mild joint pain and that's it! Now I'm back to my old symptoms. Tons of joint pain, fatigue, migraines and sleep disturbances. I also have episodes once or twice a wk where I feel so bad, I almost feel like I'm getting the flu. I Have had all these symptoms before and they all resolved when taking a break from AI's. I eat well ( mostly vegan), very minimal sugar and exercise 5 days a wk, cardio and weights 3 days a wk. My BMI is 23. I'm looking for any tips to help decrease my symptoms. I need to stay on this AI, for obvious reasons. Thanks in advance.

Dx 11/16/2017, ILC/IDC, Both breasts, 1cm, Stage IIA, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 12/27/2017 Mastectomy: Left, Right Chemotherapy 1/22/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/1/2018
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Jul 10, 2020 06:03PM BlueGirlRedState wrote:

Krose53 - I use brand name Arimidex, which does have SEs, but I think less intense than generic. I buy it directly from a pharmacy as my Insurance would charge me at least 8x as much if I went through insurance. maybe try a 30-day supply initially or even a small break before taking brand name? Talk to your MO about this. It might take longer than 30-days for effects of the one you are taking now to wear off. $2/day from Eagle pharmacy, used to be $1. Someone else posted this link over a year ago, and I still sent that person hugs. https://www.eaglepharmacy.com/drug/arimidex

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Jul 10, 2020 09:02PM - edited Jul 10, 2020 09:02PM by Krose53

Thanks. I appreciate your reply. I am on brand name Arimidex.

Dx 11/16/2017, ILC/IDC, Both breasts, 1cm, Stage IIA, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 12/27/2017 Mastectomy: Left, Right Chemotherapy 1/22/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/1/2018
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Jul 11, 2020 11:11AM CBK wrote:

Krose53


I feel your pain...truly I do. I don’t have an issue with migraines and that must be awful that no one can help you with relief from them . Those alone can be debilitating.

For joint pain I currently am using Glucosamine with Chondroitin and Turmeric. For sleep melatonin seems to work very well for me but I can only take a very small dose every couple of days or I’m totally hungover. This combination has worked well for me recently.

I was taking CBD for a while for inflammation and sleep but is caused me dry mouth and gum problems so I stopped. Not everyone has this issue so I was throwing it out as another option because it can be super effective for joint pain.

I like to drink matcha green tea daily and kombucha for energy. I fail miserably at water intake but when I get my 64 ounces a day, I feel so much better.

I hope you can find some relief!



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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Jul 13, 2020 11:14PM ZEKE wrote:

BlueGirlRed

Hi I read your post and I have been on all 3 hormone therapies for the past year I tried them all and all gave me such severe joint pain in my hips and legs it actually crippled me. The last was Femera and I have been off it for 3 weeks. I will start tamoxifen in a week my last resort. Do you feel tamoxifen did a good job for you? It looks like after you stopped taking it the cancer came some years later. Do you feel staying on tamoxifen for 10 years would have helped keep the cancer at bay?


Zeke


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Jul 14, 2020 06:56PM BlueGirlRedState wrote:

Zeke - I hope you find relief from the SEs A question. Go through the various forums, your Oncologist just might not know or be able to discuss "non-standard" . For stiffness/joints - I think turmeric as food (powder, use with black pepper) and supplements help. Glucosamine/chondroiten might help some. Acupuncture helps. Most recently I am trying electrostim with acupuncture, I think that helps. I read about a Japanese form of scalp acupuncture that seems to help, but could not find anyone who practiced it.

https://www.nursingcenter.com/ce_articleprint?an=00130989-201509100-00008

https://www.intechopen.com/books/acupuncture-clinical-practice-particular-techniques-and-special-issues/yamamoto-new-scalp-acupuncture-ynsa-development-principles-safety-effectiveness-and-clinical-applica

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3833481/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142070/

I wish I knew if tamoxifen did any good or if was just doomed to get BC again.I constantly asked my DRs about hormonal therapy. There is no monitoring on how much estrogen drops with either tamoxifen or AI. Tamoxefen blocks the receptors, and AIs block the production. It seems like it all comes down to statistics and menopause. Premenopausal get tamoxifen because the overies produce more estrogen than AIs can block. After menopause, the adrenal glands (mostly in fat) continue to produce estrogen, and it is felt that AIs work better (statistics ?). I'm taking Ibrance now, and maybe tamoxifen just is not used with Ibrance. I think I had fewer SEs with tamoxifen than AIs. This is my 3rd time with BC, and MO feels like each is a "new" one rather than recurrence, but admits there is no way to know. Sometimes I wonder if that feeling comes from a belief that the cancer treatment is working, so it must be a new one. 2009 I had a lumpectomy, radiation, and tamoxifen for 5 years, dense, lumpy left breast, normal right. 2016, cancer again in left. Chemo, bilateral (my choice), no reconstruction, started AI but immediate problems with joints, switched to tamoxifen after a few months. 2019 tumor in R-axillla. Taking Ibrance and Arimidex.

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Jul 15, 2020 01:17PM ZEKE wrote:

well who’s to say you were on tamoxifen until 2013 and did not get the cancer back until 2016. 4 years later after stopping tamoxifen. Then had chemo but got cancer back after the chemo is the right breast. So off tamoxifen and on AL.

It’s a crap shoot everyone is different. I was worried because they are taking me off AL as I just could not even walk so now they said tamoxifen does not give you that joint pain. I Know it’s not as strong and I am 62 years old so should be on AL but can’t. You take good care of yourself

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Jul 15, 2020 02:47PM BlueGirlRedState wrote:

Zeke - wishing you well. Tamoxifen might cause blood clots. This did not happen to me. But I met a woman 5 months ago in for imaging because of suspected clot. She said her DR never warned her about that or what to look for or how serious it was. She was an active woman who had just returned from a trip over-seas for a tennis tournamnent and bicycle trip. Airline travel was a risky situation that a DR should have warned her about and preventative steps. I did experience leg cramps, in particular in the left calf. Cramp could happen any time, from falling asleep to stretching to hiking to swimming. Sometimes quite painful. Mg supplements, staying hydrated, staying active helped a lot.

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