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Topic: Life on aromasin

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: 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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Mar 7, 2012 09:00AM bgail84 wrote:

I started Aromasin Feb. 1st. No major side effects so far except constipation. I actually stopped the Aromasin yesterday to see if the whole constipation issue would clear up. Am eating gluten free and taking supplements and even stopped the supplements to see if things would get better. BS doesn't see an issue. So will give it a few days and see what happens. Don't you just love the things we talk about here!Laughing. Here's hoping everyone has a good day!!!
surgery -11/03/11. No chemo, oncotype score 12 with 8% recurrence rate. 25rads,5boosts. Dx 10/27/2011, IDC, Left, 2cm, Grade 1, 0/3 nodes, ER+, HER2- Radiation Therapy 11/21/2011 Breast, Lymph nodes Hormonal Therapy 2/1/2012 Aromasin (exemestane) Hormonal Therapy 5/11/2014 Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 7, 2012 11:32AM donnajrn wrote:

Well, I just started aromasin today.  Was on Tamoxifen for 3 1/3 years for DCIS and just diagnosed with LCIS........will see if this helps.  Sure hope I do not have achy side effects like I had with the tamoxifen..........read some women lost weight on aromasin...........that would certainly work for me..

Donna

Dx 4/1/2008, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Mar 7, 2012 05:43PM ptdreamers wrote:

I have been on it since January 5th. No major problems. Once in awhile I will have really achy joints, take a couple of ibrupropen and it seems to help. I was taking it after the last meal and noticed that when I had jooint pain it really interfered with sleep. Now I tke it after lunch and when i have joint pains it comes about six-eight hours later and I can do something to manage so I get my sleep.

ptdreamers, “Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. . Sail away. Catch the trade winds in your sails. Explore. Dream. Discover.” Dx 8/26/2011, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Mar 7, 2012 10:52PM rayofsun wrote:

Thanks for the responses so far, are helpful.

Ray

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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Mar 31, 2012 07:51PM rayofsun wrote:

Aromatase inhibitors are known to cause joint pain. How soon does the joint pain appear?

Thanks ray

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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Mar 31, 2012 08:02PM dogsandjogs wrote:

All my SEs began two months after starting. Before that I only had one bad hot flash every evening. That was all - I thought I was home free    --sigh--

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Mar 31, 2012 08:41PM pupmom wrote:

hillck, was your carpal tunnel caused by the Aromasin? I have a lot of tingling and numbness in my hands, mainly at night. My MO said it may be carpal tunnel, because those symptoms are not typically from Aroasin. I've never gotten hot flashes on Aromasin. Been on since December.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Mar 31, 2012 08:57PM rayofsun wrote:

Thanks for the responses. I do work out and am not as motivated because I feel some aches. I am also having trouble with periodic tingling in my arm, could be my mild lymphedema which is mostly truncal. I am not having hot flashes but much more sensitive to temperature variations.

Ray

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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Mar 31, 2012 09:18PM beau wrote:

Hi All,

 Thanks for starting this thread! I have been on arimidex for over a year, but the arthritis is really getting to me. My onc said that sometimes switching to another AI like aromasin can lessen side thread. I look forward to hearing about how it goes for you all. I may switch on my nect visit. 

 Best, Beau 

Dx 5/5/2010, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Apr 1, 2012 02:29PM slousha wrote:

Hi Beau,

After 21 difficult months on Femara, being the third month on Aromasin I found this therapy much more tolerable! Hoping it will be effective too!

Best wishes

Dx 11/13/2009, IDC, 1cm, Stage IIIA, Grade 3, 7/15 nodes, ER+/PR+, HER2+
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Apr 1, 2012 06:28PM B123 wrote:

this is a great topic! I am trying to figure out the same thing, I am doing Zoladex (3 months) with min SE, I tried Tamox months ago and had a bad reaction.  My MO wants me to try it again, I say no way!  So now the question is, do I go on an AI and pray for min SE and/or do I stay on the zoladex shots or do I have a hysterectomy to avoid any SE of end cancer from these meds?? So many decisions and it is a scary thing to do.  I praise all of you for getting as far as you have and doing so well on it.  Please let me know how you came to your decsions and if you had a hysterectomy? I am 42 and I know that I will have a long road of Zoladex shots if I dont, however I am also worried about Osteporosis with the AIs long term. 

Dx 8/6/2011, 2cm, Stage IB, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Apr 1, 2012 11:28PM beau wrote:

Hi Usha,

I am glad to hear that Aromasin is being gentle with you! My gyn who works with a lot of ER+ women who have ovarian cancer said that only about 8% of women on Aromasin have reported joint pain while on Arimidex over 33% of women have joint problems. I don't know if she is right, but up until now, I just figured that they would all be the same for me. Now, I am re-considering my options. I will follow this thread with great interest!

B123,

I don't have any advice to offer, but just want to wish you well. Take a bit of a breather until you get comfortable with whatever decision seems right to you. I know it can be overwhelming when you have so many things to consider. A second opinion can also be helpful in sorting out the pros and cons for you.  

I see my onc in May so I may try to switch then. He said in the past that the most important thing was to stay on something for the 5 years (or more if new research says it should be longer. )

Best wishes, Beau 

Dx 5/5/2010, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Apr 2, 2012 05:36AM slousha wrote:

Hi,

my Onco said all three AI's are doing the same protection !

Dx 11/13/2009, IDC, 1cm, Stage IIIA, Grade 3, 7/15 nodes, ER+/PR+, HER2+
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Apr 4, 2012 10:12PM beau wrote:

Hi Usha,

 Yes, I heard that too! I am just going to wait to have my next mammogram in May (just don't want to change until I get the all clear, as it will mark my second year out from diagnosis. ) I just want to keep everything the same until that milestone is passed. Best, Beau 

Dx 5/5/2010, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Apr 25, 2012 08:52PM dogsandjogs wrote:

I stopped Aromasin the first week in February due to severe depression, bone and muscle pain, vision problems, constant diarrhea,  tingling and numbness of fingers and toes, water retention,and last, but not least, I have very bad osteoporosis and am terrified it will get worse. I have already fractured an arm, toe, wrist and hip (all BEFORE beginning Aromasin) 

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Apr 25, 2012 08:56PM pupmom wrote:

kayb, I did talk with my onc since posting this and she said that yes carpal tunnel is a side effect. I definitely have it. It's not so debilitating that I would even consider, for one moment, stopping the drug. I have read that Glucosamine helps. Will try that with onc's approval. Also, I am considering acupuncture. Has anybody heard if that helps?

I do have to say that even if I live with this difficult, but definitely not debilitating, se for the entire 7 years I WILL. Some discomfort at night is nothing compared with living a long and full life. 

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Apr 25, 2012 09:35PM ptdreamers wrote:

Yorkiemom, I agree. I did some gardening three days ago and that seemed to aggravate the aches and pains, particularly the hands. I am in it for the long haul and will cope to get the best outcome possible.

ptdreamers, “Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. . Sail away. Catch the trade winds in your sails. Explore. Dream. Discover.” Dx 8/26/2011, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Apr 26, 2012 10:56AM dogsandjogs wrote:

Oddly enough, I had diarrhea instead of constipation. Odd how the drugs affect everyone differently.

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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May 4, 2012 05:48PM dogsandjogs wrote:

I finally got up the courage to tell the onc that I stopped Aromasin in February due to all the side effects. I left him a message and he messaged me back that he wants to keep following me. He suggested other AIs, but even if I don't agree he still wants to follow me. So he asked me to call and make an appt. He didn't seem upset or annoyed about my decision which was nice.  

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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May 6, 2012 11:16PM stephN wrote:

I'm interested in this topic, too, since I'm about to start aromasin.  Not very many people have contributed.  I wonder if fewer people have problems on aromasin or fewer people take aromasin...hmm.

Femara was bad for me.  It hasn't been quite a week, but I'm feeling better already.  I'm really hoping I'm one of those people who has fewer problems on aromasin.

My oncologist said the same thing as Usha's.  Stay on *something* for five years.  I'm hoping I can.  It's turning out to be a little more difficult than I expected.  :) 

DX 7/12/11 DCIS w/IDC microinvasion, Stage 1, Grade 3, 0/1 nodes, ER+/PR+
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May 9, 2012 02:52PM CAROL1MAINE wrote:

Kayb  Did you also have any hand trembling when arms where held out and wrist turned back?

Mine arms are also hurting left arm hurting and sore around elbow sounds like PT could also help me

Arm does feel better when held out straight and not bent. Any other ladies had hand trembling?

I'm on my 5th month of Aromasin 

Thanks

Dx 6/20/2010, ILC, Stage IV, mets, ER+, HER2- Chemotherapy 9/4/2014 Other
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May 9, 2012 02:57PM ptdreamers wrote:

No hand trembling but boy the hands and elbows sure do ache. Also noticing more low back pain. Will try and up my exercise and see if it helps.

ptdreamers, “Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. . Sail away. Catch the trade winds in your sails. Explore. Dream. Discover.” Dx 8/26/2011, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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May 9, 2012 06:46PM beau wrote:

Hi Carol,

 I sometimes notice that when I spread my fingers, my fingers wiggle/tremble, like the nerve connections are not working as well. If I really concentrate, I can usually get them to stop. I am trying to do more yoga and a few weights since I hold to use it or lose it school of thought. I think that these AIs are lke fast foward into old age so we run into all sorts of issues. I had carpel tunnel for a while (wrist splints got me through that). I know have tendonitis in my wrist/thumb joint - finally seeing a doctor next week after 3 plus months where it is only getting worse. Definitely notice my hand strength is down - tough to open jars etc. Apparently. squeezing a tennis ball and using the elastics that come around brocoli for hand exercises can help so I am giving that a try too. 

Good Luck! Beau 

Dx 5/5/2010, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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May 9, 2012 06:48PM beau wrote:

Hi Carol.

 I meant to add that I am on Arimidex and have been for a year and a half. I am just taking a 3 week break and then I am going to give Aromasin a try because I have heard that some folks have less arthritis on it.  

Dx 5/5/2010, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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May 10, 2012 08:40AM CAROL1MAINE wrote:

thanks PTdreamers my elbow also hurts and a little swollen on tne inside helps if I don't keep it bent.

Thanks Beau spreading my fingers also make them wiggle, was afraid it was a brain thing, paranoid

Carol 

Dx 6/20/2010, ILC, Stage IV, mets, ER+, HER2- Chemotherapy 9/4/2014 Other
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May 11, 2012 09:55AM bgail84 wrote:

I have been on Exemestane (generic brand) for three months and thankfully side effects seem to be leveling off. I no longer have the hot flashes but have noticed joint pain is worse, especially on the surgery side. My BS assures me the joint pain will get better so here's hoping! My question would be if anyone knows how these drugs effect our kidneys? Since there is a history of kidney disease in my family, I am concerned about problems. If anyone has heard anything I would love to hear from you. Have a great day!

surgery -11/03/11. No chemo, oncotype score 12 with 8% recurrence rate. 25rads,5boosts. Dx 10/27/2011, IDC, Left, 2cm, Grade 1, 0/3 nodes, ER+, HER2- Radiation Therapy 11/21/2011 Breast, Lymph nodes Hormonal Therapy 2/1/2012 Aromasin (exemestane) Hormonal Therapy 5/11/2014 Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 11, 2012 01:56PM ptdreamers wrote:

One of the warnings is to talk to your doctor if you have kidney disease. If it is in your family but you don't have it I would think that the blood tests they do would pick up any problems early enough to prevent major problems. Good luck.

ptdreamers, “Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. . Sail away. Catch the trade winds in your sails. Explore. Dream. Discover.” Dx 8/26/2011, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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May 15, 2012 02:49PM RoseR wrote:

My oncologist started me on Femara and after 5 months the joint pain was so horrible, I was unwilling to continue - even after a break. So I switched to Aromasin and completed my 5 years. During my time on Aromasin I exercised regularly and had minor joint pain - very liveable. However, my memory was terrible. My Dad had Alzheimer's so it made me concerned that I might be heading down that road too.

I finished my Aromasin in January of this year and am happy to report that the minor joint pain in my elbows and back and the memory problems disappeared within a month or two.

Everyone is different and I was fortunate to find the med I could live with. I encourage others to consider trying switching if one is intolerable.

Good luck to you! 

Dx 4/21/2006, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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May 16, 2012 05:00PM - edited May 16, 2012 05:03PM by hipgranny

I have just finished 5 years of Aromasin.  My last pill was about three weeks ago.  I have been having bad headaches.  They are much like the headaches I had when I was going through the change.  Has anyone else had headaches after stopping the drug?

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May 16, 2012 10:40PM fondak wrote:

Hi everyone, 

I started the generic aromasin two weeks ago a few days after finishing radiation.  My mo's nurse practioner told me they wait a month or so after radiation for your body to rest before starting.  Then she told me if I would like, I could go ahead and start. 

Of course I couldn't wait to start but now I'm wondering if I should have.  I am very tired and achy.  It was just my hands and shoulders but today my legs, arms and neck also hurt.  After I get up from sitting it's really bad.  It feels like a 2nd day after chemo for me today.  I have also been sleeping in and today fell asleep in the chair for more than an hour when the phone rang next to me and woke me.  I'm 46 and today I feel like I'm 90.

Perhaps I have just caught a bug as I also have a headache today.  I am hoping my gyn can shed some light on this tomorrow.  I see him for pre-op for a hysterectomy/ooph (? uterus and ovaries removed - I'm not well versed in all the terminology) Monday.

If this is from beginning this treatment, has anyone experienced improvement as their bodies adjust to taking it?  How long did you wait until starting it after finishing chemo and radiation?

When I feel like this I struggle between pushing myself and being more active to feel better or perhaps my body needs the rest.  How do you determine what your body really needs?  

Thanks

  

Dx 8/5/2011, IDC, 5cm, Stage IIIA, Grade 2, 9/9 nodes, ER+/PR+, HER2-

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