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Topic: Life on aromasin

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: Mar 6, 2012 09:31PM - edited Nov 15, 2017 02:03PM by Moderators

rayofsun wrote:

Just starting aromasin after being on tamoxifen for 1.5 years. I am also on effexor so did not experience hot flashes with tamoxifen and my other side effects were mild. Am curious how others have done on Aromasin.

Thanks ray

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

brca neg.SNB 10/09, bilateral mastectomy 4/10. DIEP , ooph and tubes removed 1/5.11.. started breast cancer vaccine study for her2 positive at hopkins on feb 2011. Dx 9/30/2009, IDC, 6cm+, Stage IIIC, Grade 2, 1/25 nodes, ER+/PR-, HER2+
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Apr 11, 2019 07:24PM Luwusu wrote:

Murphy,

I’m not HR-. I’m +

Dx 9/27/2016, LCIS/DCIS/IDC, Left, Stage IIB, Grade 3, ER-/PR-, HER2+ (FISH) Surgery 4/17/2017 Lumpectomy; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 6/12/2017 Breast, Lymph nodes Targeted Therapy Perjeta (pertuzumab) Chemotherapy Taxol (paclitaxel)
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Apr 12, 2019 06:46AM shycat wrote:

Then your signature is incorrect: it says "ER-/PR-".

shy Dx 1/7/2014, IBC, Left, Stage IIIC, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 1/16/2014 AC + T (Taxol) Surgery 6/2/2014 Mastectomy: Left, Right Hormonal Therapy 6/27/2014 Arimidex (anastrozole) Radiation Therapy 7/14/2014 Breast, Lymph nodes Hormonal Therapy 3/27/2015 Aromasin (exemestane)
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Apr 12, 2019 09:27AM Luwusu wrote:

When i was first diagnosed it was considered estrogen negative because the percentage of estrogen was low. However, I was told by my oncologist that for anyone with an estrogen # higher than 2% it’s strongly recommended to take an estrogen blocker. My percentage, though low, was higher than 2%.

Dx 9/27/2016, LCIS/DCIS/IDC, Left, Stage IIB, Grade 3, ER-/PR-, HER2+ (FISH) Surgery 4/17/2017 Lumpectomy; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 6/12/2017 Breast, Lymph nodes Targeted Therapy Perjeta (pertuzumab) Chemotherapy Taxol (paclitaxel)
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Apr 12, 2019 10:11AM shycat wrote:

Ah, that explains the confusion.  For me, there was zero question of taking an AI: my IBC was 100% ER+, so side effects are something I am more than willing to deal with.

shy Dx 1/7/2014, IBC, Left, Stage IIIC, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 1/16/2014 AC + T (Taxol) Surgery 6/2/2014 Mastectomy: Left, Right Hormonal Therapy 6/27/2014 Arimidex (anastrozole) Radiation Therapy 7/14/2014 Breast, Lymph nodes Hormonal Therapy 3/27/2015 Aromasin (exemestane)
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Apr 15, 2019 02:26PM AKColleen wrote:

I began aromatase inhibitors, starting with Femara. Whew I threw up weekly on that and was so constipated only enemas would help. I had to convince my ONCO it was Femara causing this, so finally my ONC changed me to Aromasin. I've completed 1 year on Aromasin with no side effects. However...lately I've been really moody and just don't have any energy. Is that normal after being on Aromasin for a while? I am already on 60mg prozac daily. Also my libido is tanking. Is that normal?

Also for those with constipation....I finally found what worked for me. I take one 250mg tab daily in AM of colase/stool softner (Equate - generic for colase- on Amazon) and in the eve I take 1 -2 tablets of Senokot-S daily. If I deviate from this I get constipated.

Dx 5/31/2017, ILC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 5/31/2017 Lumpectomy: Right Radiation Therapy 7/15/2017 3DCRT: Breast Hormonal Therapy Aromasin (exemestane), Femara (letrozole)
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May 11, 2019 01:14AM DancingElizabeth wrote:

Hi - I’ve been on Arimidex (Anastrolze) for 2 1/2 years. No issues with constipation. BUT - definitely no libido. And, now issues with my right thumb and wrist. (I think brought on by over-doing it in Body Pump class). I’m so sick of it hurting. And, worried in case this is Mets. :-(

I guess my MO will help sort it out. But, I am scared and wish this thumb/wrist pain would go away!!!

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/17/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/7/2016 Hormonal Therapy 11/8/2016
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May 11, 2019 07:16AM dtad wrote:

DancingElizabeth..so sorry you are hurting. IMO your thumb and wrist issues are much more likely to be from the Arimidex than mets. Of course you should get it checked out but joint issues are a very common side effect of aromatase inhibitors. Unfortunately so is joint damage. Good luck and keep us posted.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 12, 2019 10:47AM Bliss58 wrote:

DancingElizabeth, I agree with dtad that your thumb/wrist pain is mostly likely from the AI, but do get it checked out to be sure. Just wanted to chime in because I developed a painful trigger thumb after 15 mos. on Extemestane. My onco suggested a cortisone shot that I recently got from my primary care doc. It has done wonders for me! Still pops slightly, but no more pain and that was my goal.

Dx at 56 06/2015, IDC left, 4cm, de novo mets to bone; dx 04/2020 progression to liver. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV, metastasized to bone Radiation Therapy 12/16/2015 External: Bone Surgery 2/17/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/9/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane) Dx 4/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ (IHC)
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May 12, 2019 10:51AM Murfy wrote:

Yes, I also had thumb/wrist pain in the beginning with exemestane. Went off EX for about 7 days and trigger thumb resolved and has never returned. Wrist pain continued, was diagnosed as DeQuervain's tenosynovitis, and required a cortisone shot that completely resolved the condition. Am now pain-free!!

Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/14/2017 Mastectomy: Left Chemotherapy 1/13/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/31/2018 Aromasin (exemestane)
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May 16, 2019 02:11PM emilyjones wrote:

Aromazin works by binding the active substance to the active fragment of the enzyme. As a result, it is inactivated. Under the influence of Aromasin, the concentration of estrogen in the blood in postmenopausal women is reduced. This process is observed when taking a dose of 5 mg, the most pronounced decrease is observed when taking doses of an agent of 10-25 mg. Medixo Centre

According to existing studies, women in this category who received 25 mg of the drug daily, the content of the aromatase enzyme decreased by 98%.

Exemestane does not demonstrate progestogenic and estrogenic activity. If the agent is used in large doses, its insignificant androgenic activity is noted.

Emily
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May 16, 2019 04:14PM Moderators wrote:

Thank you emilyjones for this explanation. Are you personally affected by breast cancer?

Here is a page from our site on Aromasin (Aromasin) that could be helpful.


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 10, 2019 02:11PM notthrilled wrote:

Switched to Anastrazole a month ago because I could not stand the tendonitis in my leg from the exemestane. I had gone off it for 6 weeks and my Onc nurse badgered me into starting Anastrazole (Letrizole pained the knees). So far not much side affects other than tired, a little knee soreness, maybe a bit dizzy on occasion, sleeplessness was bad at first, but better now that I take it in the morning. I am thinking that rotating AI is probably the only way I will get through years of this though if the bone loss is bad I don't think it is worth it. A little paranoid about bone loss. Now using algae calcium, its supposed to be more absorbable. They won't recommend a bone scan until its been 2 years. Its so hard to parse the studies that say AI is worth it - what type of cancer did subjects have, what size, what treatment after? Is recurrence only in the breasts and don't apply if you had a double mastectomy etc. I hate speaking with the Oncs and their minions, they all make you feel like you are a hypochondriac and a whiner and they have never heard of any of the SEs. Really? Isn't this their business?. Sigh.

Dx 5/2017, LCIS/DCIS/IDC, Both breasts, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 7/13/2017 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 8/23/2017 Femara (letrozole) Surgery 9/27/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/10/2017 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole)
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Jul 10, 2019 06:06PM - edited Jul 10, 2019 06:07PM by bennybear

  1. I would ask for a bone density and look at your risk benefits. For me in six months of half Anastrozole and half Exemestane I lost 10 percent of my spine and developed osteoporosis after being stable for years. Even while taking fosamax for three months with the AIs. So in my case a 2 percent less chance of recurrence wasn't worth the bone loss. My MO says this is not typical and didn't want to repeat my bone density. Fortunately my PCP listened to my concerns and had the test done. Other wise in two years I would be very worried about how much further bone loss there would have been.
  2. Best of luck making the best decision for you!
  3. I also had terrible knee pain to the point I was having difficulty walking. This has totally resolved
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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Jul 13, 2019 09:34PM sweetp6217 wrote:

Hello all, I've been taking Femara/Letrozole for 14+ months and am noticing being in the dumps, too much appetite, discomfort in the joints, pain in the hands with repetitive tasks, and am not sure if constipation counts. Also, I live on prescription nasal sprays (one is steroidal), singulair and seldom use of sudafed. I'm not sure what to try next since Letrozole was supposed to be my best choice. I've heard my options might be Exemestane, Tamoxifen and Anastrozole. Could a change be akin to going from the frying pan into the fire?

Dx 7/7/2017, IDC, Left, 2cm, Stage IIB, Grade 3, 1/2 nodes, HER2+ (FISH) Targeted Therapy 7/27/2017 Herceptin (trastuzumab) Chemotherapy 7/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Radiation Therapy 2/21/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 4/14/2018 Femara (letrozole)
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Jul 13, 2019 10:56PM Luwusu wrote:

I’ve been off of Exemestane 3 months now, after being on it for 18 months. My oncologist isn’t happy about it but my quality of life won out. I know I’m taking a chance - I think my chance of reoccurrence goes from 20 to 24% without it.Not everything is hunky dory but I have less muscle/joint pain and slightly more energy. It’s a hard decision to make, and a very personal one. I am sorry that we all have to deal with these issues after dealing with everything g else.

Dx 9/27/2016, LCIS/DCIS/IDC, Left, Stage IIB, Grade 3, ER-/PR-, HER2+ (FISH) Surgery 4/17/2017 Lumpectomy; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 6/12/2017 Breast, Lymph nodes Targeted Therapy Perjeta (pertuzumab) Chemotherapy Taxol (paclitaxel)
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Jul 14, 2019 06:49AM Kiascia wrote:

Hi can someone explain if I'm doing aromasin and excersizing 3 times a week am I benefiting a 40% reduction in reaccurance plus the reduction for using the pill or is 40% total for both?

Dx 7/30/2016, IDC, Right, 2cm, Stage IIIA, Grade 2, 4/7 nodes, ER+/PR+, HER2- (FISH) Surgery 8/31/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/7/2016 AC + T (Taxol) Hormonal Therapy 5/25/2017 Aromasin (exemestane) Hormonal Therapy Aromasin (exemestane)
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Jul 14, 2019 12:28PM Kiascia wrote:

Bump

Dx 7/30/2016, IDC, Right, 2cm, Stage IIIA, Grade 2, 4/7 nodes, ER+/PR+, HER2- (FISH) Surgery 8/31/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/7/2016 AC + T (Taxol) Hormonal Therapy 5/25/2017 Aromasin (exemestane) Hormonal Therapy Aromasin (exemestane)
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Jul 16, 2019 09:55PM OG56 wrote:

this is my second time around with an aromatase inhibitor I initially in 2008 was placed on Arimidex I had many side effects mostly joint pain, no libido, and then I had a reoccurrence in 2016 and I really was upset when they said I had to do another 5 years my reoccurrence happened 3 years after I was off the Arimidex. This time I'm taking aromasin and I had no side effects for the first year second-year everything kind of hit me I am now in with a pain management doctor and I am having my dexa scan next week I'm afraid it's not going to be good news. I actually had the new test and I cannot tell you the name of it I'm still going to play the chemo brain card, but the test is to see if I actually needed to take an aromatase inhibitor again and it came back that I absolutely did. I have currently put myself on a break which my oncologist is going to have a fit about. I'll let you know what happens.

Linda Dx 5/30/2008, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- Dx 9/22/2016, ILC, Right, <1cm, Stage IB, Grade 3, 0/14 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 2/7/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 18, 2019 05:54PM Bliss58 wrote:

Sweetp, I'll share my experience with AIs. I started on Anastrozole and after 7 mos. developed terrible SEs and I ended up not walking well even with a cane. MO switched me to Letrozole and I was able to ditch the cane and got a good 17 mos. before knee problems developed again along with a trigger thumb, so I was back on the cane. Now, I've been on Exemestane for over 18 mos. and while I have not been able to ditch the cane, I'm 60 now and have a left knee problem that continues to be exacerbated by this AI, I think I'm doing the best on it overall. Everyone reacts to AIs differently, so it's hard to say if one will work better for you than another. Good luck.

Kiascia, I'm not sure about the 40%, but wanted to acknowledge your question. My guess would be with both, but I don't know for sure and hope someone else will come along who has some accurate info to share.


Dx at 56 06/2015, IDC left, 4cm, de novo mets to bone; dx 04/2020 progression to liver. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV, metastasized to bone Radiation Therapy 12/16/2015 External: Bone Surgery 2/17/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/9/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane) Dx 4/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ (IHC)
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Jul 19, 2019 02:36PM Mom2Sarah wrote:

So it looks like I'm not crazy! Well...… you know. Haha! I've been on Aromasin and Lupron injections for two months now. I've noticed a lot tingling and numbness in my hands and fingers in the evenings and I don't believe it's carpal tunnel. I never had this issue before starting these. I'm going to mention to my onc at my next visit, but I'm assuming not much can be done. It's STILL better than Tamoxifen!

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Jul 19, 2019 03:06PM Murfy wrote:

Went off exemestane for a week or so to see if shoulder pain (ruling out rotator cuff injury) would clear. It did. I also felt overall really good! Better energy, reduced aches and pains, a libido. Amazing how these AIs make one feel old. Of course, I'm back on and will continue for another 3.5yrs to keep any residual cancer cells at bay. Whatever it takes....

Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/14/2017 Mastectomy: Left Chemotherapy 1/13/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/31/2018 Aromasin (exemestane)
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Jul 26, 2019 09:00AM Toni_S wrote:

i started Aromasin a few weeks ago. And although my blood pressure has been normal it is now creeping up to the hypertension stage. I am monitoring blood pressure at home and if it continues to stay high I will need to be on blood pressure drugs or to try another drug. My onc said this is a known side effect with all aromatase inhibitors. Anyone else having this issue

Dx 4/20/2011, ILC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 12/18/2018, ILC, Right, 1cm, 1/21 nodes, ER+/PR-, HER2-
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Jul 26, 2019 10:16AM ElaineTherese wrote:

Toni S,

I had high blood pressure before I began Aromasin. It is controlled by a three drug cocktail, Lisinopril, Amlodapine, and Hydrochlorothyozide. My blood pressure has been great on Aromasin, maybe because I'm already treating it.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Jul 27, 2019 03:56PM Blownaway wrote:

Does anyone have fluid retention with exemestane? My hands are so swollen when I wake up, I can't make a fist and haven't been able to wear any rings for a year (since I've been on this AI). Never had this problem before. Still better than Tamoxifen s/e's though. Also my blood circulation to hands is less. My fingersare always "going to sleep" especially when I grip something like a pencil, etc.

Dx 3/31/2014, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 5/12/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 6/2/2014 Lumpectomy: Left Chemotherapy 7/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/2/2014 Herceptin (trastuzumab) Radiation Therapy 10/6/2014 3DCRT: Breast Hormonal Therapy 1/9/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Breast
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Jul 27, 2019 08:29PM Capecodgirl wrote:

Hi Blownaway-

I thought it was my knuckles that got swollen (had to have rings expanded from a size 6 to 7 1/2), but maybe it is fluid retention. My hands are so stiff in the morning that I cannot make a fist. Also the skin on my hands burn, and the tissues inside my hands burn as well at times. The issues with my hands bothers me more than the joint pain. My onc said it is systemic, which I guess is his way of saying nothing can be done about it. My pcp prescribed gabapentin for it but I did not find that helped. The longer i take exemsestane the worse it seems to get. Not sure I will make my full 5 years....

Brca2+ Dx 5/24/2017, IDC, Right, 1cm, Stage IB, Grade 1, 1/2 nodes, ER+/PR+, HER2- Surgery 5/31/2017 Lumpectomy: Right Surgery 11/17/2017 Prophylactic ovary removal Hormonal Therapy 9/10/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes Hormonal Therapy Aromasin (exemestane)
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Jul 30, 2019 03:20PM Blownaway wrote:

My hands don't burn, they are just swollen and the knuckles are stiff. I am giving myself a break from the exemestane to confirm the source

Dx 3/31/2014, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 5/12/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 6/2/2014 Lumpectomy: Left Chemotherapy 7/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/2/2014 Herceptin (trastuzumab) Radiation Therapy 10/6/2014 3DCRT: Breast Hormonal Therapy 1/9/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Breast
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Jul 30, 2019 04:05PM Luwusu wrote:

it’s interesting to me to hear about the finger and hand issues some of you are experiencing. Last Sept I broke my wrist- the first bone I had ever broken. I had been on Exemestane about a year at that point. When my wrist-arm cast was removed, my hand was extremely swollen. I began OT right away and therapist told me I had lymphedema. I learned that a bone break can trigger lymphedema in breast cancer patients. I began to see a lymphedema specialist too, and went from compression wrapping to gauntlet and sleeve over the next weeks and months. I stopped OT in the beginning of March and hoped I’d improve on my own. I also stopped taking Exemestane a month later because of multiple side effects.

I still cannot make a fist (not even close) or bend my fingers. The lymphedema part is under control and just a minor inconvenience at this point, but not having much use of my hand is frustrating g Nd discouraging. I started back with my OT two weeks ago. She suggested seeing another hand surgeon/specialist so I set up an appt for this Thursday. I now think that not only did the wrist break cause the lymphedema, but that the Exemestane caused the major joint issues I’m having in my fingers. No doctors seem to have out this info together. The ortho Drs seem to know nothing about lymphedema being triggered by a bone fracture. My onc knew I was having major hand issues and didn’t mention that the Exemestane I was on for 18 months could have exasperated any joint issues for me. Nope. Nobody has treated or understood my whole situation. I have more pieces of the puzzle that I can now give the new ortho on Thursday, but it sure would have been nice if any of the highly paid, medically trained Drs I’ve seen could have offered the puzzle pieces to me instead of me trying to figure things out.


Dx 9/27/2016, LCIS/DCIS/IDC, Left, Stage IIB, Grade 3, ER-/PR-, HER2+ (FISH) Surgery 4/17/2017 Lumpectomy; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 6/12/2017 Breast, Lymph nodes Targeted Therapy Perjeta (pertuzumab) Chemotherapy Taxol (paclitaxel)
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Jul 30, 2019 06:42PM bennybear wrote:

it is frustrating how things are downplayed for sure. I developed osteoporosis from only six months of AIs and was told it was atypical. I too had serious joint issues and was struggling with walking. I am off these drugs and most of the issues have resolved other than the new gift of osteoporosis!

I really wish they would be more upfront about the costs vs benefits of these drugs. In my case it was only two percent less chance of recurrence, so ask your doctors how much benefit it is for you personally as we all are different.

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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Jul 30, 2019 07:57PM Luwusu wrote:

I know what the potential benefit would be: 4% less risk ‘of recurrence. But I did not have quality of life while on Exemestane. My oncologist wants me on an AI. I do not. I don’t see myself going back on

Dx 9/27/2016, LCIS/DCIS/IDC, Left, Stage IIB, Grade 3, ER-/PR-, HER2+ (FISH) Surgery 4/17/2017 Lumpectomy; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 6/12/2017 Breast, Lymph nodes Targeted Therapy Perjeta (pertuzumab) Chemotherapy Taxol (paclitaxel)
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Sep 6, 2019 09:51AM Capecodgirl wrote:

I have just decided to reduce my dose of exemestane- have cut my remaining pills in half and will take one half pill per day. The shoulder and bone pain have just made me so uncomfortable I need to do something about it. Not to mention the hand and foot burning/pain as well. I have not mentioned this to my MO. Will do it when I see him in December.

I am wondering if anyone here has done the same thing, and if it has helped their side effects at all. Or if anyone knows if the reduced dose will increase the estrogen level enough so that there is no benefit to taking it this way. I have read a lot about people doing this with tamoxifen, but not so much with exestane or other AIs.

Thanks in advance for any insight/advice.

Brca2+ Dx 5/24/2017, IDC, Right, 1cm, Stage IB, Grade 1, 1/2 nodes, ER+/PR+, HER2- Surgery 5/31/2017 Lumpectomy: Right Surgery 11/17/2017 Prophylactic ovary removal Hormonal Therapy 9/10/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes Hormonal Therapy Aromasin (exemestane)

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