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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 07:31PM - edited Nov 15, 2017 12:03PM 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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Jun 7, 2012 02:34PM mybee333 wrote:

And how do you feel, estrogen free as you are?

Don't wait for the storm to pass, learn to dance in the rain. ~ UMX w/ silicone implant reconstruction. Multifocal -IDC, DCIS, Pagets. Dx 4/6/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Jun 7, 2012 05:17PM Kindergarten wrote:

Hi, Dogs and Jogs, My last Dexa scan showed that I have osteopenia, but it has shown that yearly!!!! I will have another scan in January of 2013. MYbee, When I went off the aromasin, which is mildy steroidal, my appetite did diminish, but anxiety and depression were side effects of going off of it. Wierd!!!! I did not have anxiety and depression when I was on aromasin!! So I am on a low dose of lexapro!! My new onc in CA may put me on Femara!!!

Kathy Dx 11/17/2004, IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2- Chemotherapy 12/4/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/28/2005 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Radiation Therapy 6/4/2005 Breast Dx IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2-
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Jun 7, 2012 08:50PM mybee333 wrote:

Does the steriodal component of Aromasin make you hungrier?

My MO is thnking of an anti-depressant for me but counselor said we'd give it a few more wks. and see how I felt.

Don't wait for the storm to pass, learn to dance in the rain. ~ UMX w/ silicone implant reconstruction. Multifocal -IDC, DCIS, Pagets. Dx 4/6/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Jun 7, 2012 09:28PM Kindergarten wrote:

It was only my third onc that finally admitted that aromasin, because of its steroidal effect, probably increased my hunger. I gained alot of weight my first year on it, then went on a low carb diet, which I am still on, and lost the weight.  I am very carb sensitive.  However, since being off of aromasin, my hunger has diminished considerably and I have noticed that pounds come off a little easier too.  But please, try to take the aromasin as long as you can, not everyone has the same side effects. My friend who was on it actually lost weight while on it and ate pretty heartily. I feel now that I have done everything humanly possible to control and prevent a recurrence. I will be 8 years out, and I can honestly say that I am glad I took the aromasin. I also think that part of my weight issues were due to being in menopause and I also had a complete hysterectomy right after chemo and bi-lateral mastectomy!!!!!  I am sure you are going to do great on aromasin, just make sure you let your onc know of any side effects. Your onc will do everything possible to help you!!! hugs to you!!!!!

Kathy Dx 11/17/2004, IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2- Chemotherapy 12/4/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/28/2005 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Radiation Therapy 6/4/2005 Breast Dx IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2-
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Jun 8, 2012 08:45AM dogsandjogs wrote:

Mybee: Do some research before you take an anti-depressant. I took them for years and think they helped cause my breast cancer. Since they suppress your immune system they are not good for you.

If thinking has changing thru the years of what I'm saying, then I stand corrected!  But please research and get a second opinion.

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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Jun 8, 2012 08:48AM dogsandjogs wrote:

Very true!   I was constantly hungry for carbs. It was infuriating and I gained a spare tire around my middle which I working hard to get rid of!

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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Jun 8, 2012 12:56PM stephN wrote:

I have the dry mouth too.  Effexor can cause it.  The aromasin probably makes it worse.  It dries up everything!  ;o)

I'm having trouble sleeping and having weird dreams.  I've gained weight, but I think it's from the hyster/ooph I had in Dec.  My body went from having too much estrogen to having zero with the aromatase inhibitors in a period of about two weeks.  I think I totally freaked it out.  

Thanks for sharing your tips.  I'm going to try taking it right before I go to sleep and see if that helps!  My teenagers are keeping me awake late, so maybe if I take it late at night, I'll get a few hours of sleep.  I'm exhausted!

Steph 

DX 7/12/11 DCIS w/IDC microinvasion, Stage 1, Grade 3, 0/1 nodes, ER+/PR+
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Jun 8, 2012 08:10PM bak94 wrote:

Hi everyone!

I started taking aromasin about 6 weeks ago. I am gradually feeling worse! I am very stiff and sore in the morning and don't want to move, but as the day gets going I start to feel better. I have had lower back issues most of my life and this has seemed to aggravate it, very frustrating. I am only 3% er positive so I am not even sure it is worth taking it, but sometimes I feel I must do whatever I can. My doctor feels very strongly about me being on it. Oh, unrelated, I am also having problems with lymphedema. It seems like just everyday activity is so difficult, like getting up and getting ready for work. Will it get easier? My last chemo was in October and last radiation in March, I thought I woould be feeling much better by now:(

Not really sure what stage I am-Some docs say 3C, others say stage 4. I had no auxillary nodes positive but had internal mammary nodes positive and possibly mediastinal node positive. It's just a number anyways, right? Dx 12/15/2002, IDC, 3cm, Stage IIB, Grade 3, 2/40 nodes, ER-/PR-, HER2- Surgery 1/2/2003 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 2/5/2003 Adriamycin (doxorubicin), Taxol (paclitaxel) Radiation Therapy 7/8/2003 Breast, Lymph nodes Dx 4/5/2011, IDC, 2cm, Stage IIIC, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 4/27/2011 AC Targeted Therapy 5/14/2011 Avastin (bevacizumab) Chemotherapy 7/29/2011 Abraxane (albumin-bound or nab-paclitaxel) Surgery 11/30/2011 Mastectomy: Left, Right Radiation Therapy 2/11/2012 Breast, Lymph nodes Hormonal Therapy 4/10/2012 Aromasin (exemestane) Hormonal Therapy 8/2/2012
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Jun 8, 2012 09:59PM mybee333 wrote:

stephN ~ Teenagers are a whole other issue.......  :)

Don't wait for the storm to pass, learn to dance in the rain. ~ UMX w/ silicone implant reconstruction. Multifocal -IDC, DCIS, Pagets. Dx 4/6/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Jun 9, 2012 10:22AM stephN wrote:

Haha, mybee!  Amen to that!  

bak94, I changed from letrozole to aromasin(exemestane, actually) because of joint pain and stiffness.  I just couldn't take it.  I am more stiff now than I was a couple of weeks ago when I first started the aromasin, but still nowhere close to as bad as it was with letrozole.  But my point--and yes, I do have one :)--is that you might have better luck with another AI.  The other option my onc gave me was to take something like celebrex or mobic everyday to try to help the pain.  Hope you are able to find some relief!

Steph 

DX 7/12/11 DCIS w/IDC microinvasion, Stage 1, Grade 3, 0/1 nodes, ER+/PR+
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Jun 9, 2012 11:16PM bak94 wrote:

Steph, I may look into that, thanks! Does yours get better later in the day? As long as I keep moving I am ok. If I sit or lay down for a bit I get all stiff again. Good reason to keep moving:)

Not really sure what stage I am-Some docs say 3C, others say stage 4. I had no auxillary nodes positive but had internal mammary nodes positive and possibly mediastinal node positive. It's just a number anyways, right? Dx 12/15/2002, IDC, 3cm, Stage IIB, Grade 3, 2/40 nodes, ER-/PR-, HER2- Surgery 1/2/2003 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 2/5/2003 Adriamycin (doxorubicin), Taxol (paclitaxel) Radiation Therapy 7/8/2003 Breast, Lymph nodes Dx 4/5/2011, IDC, 2cm, Stage IIIC, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 4/27/2011 AC Targeted Therapy 5/14/2011 Avastin (bevacizumab) Chemotherapy 7/29/2011 Abraxane (albumin-bound or nab-paclitaxel) Surgery 11/30/2011 Mastectomy: Left, Right Radiation Therapy 2/11/2012 Breast, Lymph nodes Hormonal Therapy 4/10/2012 Aromasin (exemestane) Hormonal Therapy 8/2/2012
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Jun 10, 2012 08:21AM Kindergarten wrote:

Good news, when you go off aromasin, the good side effects stay(keeping the cancer away) for at least 5 years, but the bad side effects go away. In the meantime while you are on it, lots of exercise, to keep the joints and muscles moving, and drink lots of water, to flush out the bad stuffWink thoughts and prayers are with you all as we continue on this journey!!!!
Kathy Dx 11/17/2004, IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2- Chemotherapy 12/4/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/28/2005 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Radiation Therapy 6/4/2005 Breast Dx IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2-
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Jun 10, 2012 08:55AM donnajrn wrote:

I was on Tamoxifen for 3 1/2 years, and because of the new data, and side effects of the tamoxifen my onc started me on Aromasin 3 months ago.  The side effects I had were horrible.  Terrible joint pain, esp in my shoulder (that really affects sleeping, turning and getting out of bed-impossible), leg aches and walking like I was over 100.  Yes, when working and being active the discomfort was not as bad but at home, after riding in a car........it hurt so badly to walk.......so, after discussion I stopped this med (just this week) and restarted tamoxifen........she said: I thought you did not like tamoxifen because of the side effects,I said right but cannot remember what they were because this is so bad.  Still having the aromasin aches, but it has only been 4 days.

Dx 4/1/2008, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Jun 11, 2012 11:42PM stephN wrote:

Bak, yes, my aches get better later in the day with aromasin.  They're actually not bad at all right now.  Mainly just my feet and hands and not too hard to live with.  i work on the computer so I am sitting most of the time, but I try to get up and walk every little while.  With letrozole, I felt like I had the flu all the time.  It was really awful.  I'm keeping my fingers crossed these aches and pains stay fairly mild.

So, I understand where you're coming from, Donna!  I hope Tamox is better for you again and that the aches and pains fade away. 

DX 7/12/11 DCIS w/IDC microinvasion, Stage 1, Grade 3, 0/1 nodes, ER+/PR+
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Jun 11, 2012 11:49PM Trisha-Anne wrote:

I've been on Arimidex for 14 months and am currently having an 8 week holiday off it and then will start Aromasin on onc's orders.

I've had such horrible se's on Arimidex - very bad joint pain and insomnia - I've also developed degenerative arthritis in almost all my joints while being on Arimidex.  I'm hoping I'll have a much easier time on Aromasin, but after reading these posts I'm a bit scared that it will be the same.

I've been off the Arimidex for 4 weeks now - and I feel fantastic!  I shudder every time I think of going back to that pain and sleeplessness.  I have to take something as I was strongly er+ I know I don't really have a choice, I want to do everything I can to prevent a recurrance.

Trish

I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 12, 2012 01:04AM camillegal wrote:

I've been on A for a littl over 1 yr. and (to me) it's getting worse. I type with 2 fingers and still have to stop te other ones don't work well. And my  legs don't just cramp up they stiffen with pain I take K-Dur for the cramping---I'm low on pot for another reason and I tought it would get better, but nothing is it's just worse--I see my onc in a couple of weeks, so I get relieved reading others are having someof these problems, not happy for anyone, but just knowing I'm not the only one makes me feel better. People just don't understnd that I don't feel better I men I limp and walk like I'm 90 and I just make a joke of it, but the pain is o joke and it's exhausting for me. After I walk around (excercise) I feel like I did a marathon and my eyeballs hurt. I have also been told I have severe arthritis NOW , So Tell me please how can u do daily excercise in such ppain--oh nd I lso have LE so I swell too. I know I'm ranting, it's 2am and again I'm awake.. Well the last couple of days have really been awful so I'm all wound up Sorry.
Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 12, 2012 08:32AM Mopsy wrote:

How do you know if you are "strongly ER+".  Is that a score on a report?

Oncotype Dx 11; no chemo; no reconstruction; multi-focal; post-menopausal Dx 12/21/2011, ILC, 3cm, Stage IIB, Grade 1, 4/19 nodes, ER+/PR+, HER2- Surgery 2/28/2012 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Radiation Therapy 5/14/2012 Breast, Lymph nodes Hormonal Therapy 7/12/2012
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Jun 12, 2012 09:00AM dogsandjogs wrote:

I am wondering if the aches and pains from Aromasin will ever go away.  I am so arthritic now - it came on within a few months of being on Aromasin and has not gone away. I have a really tough time bending my knees; they really hurt.  I had some arthritis before the Aromasin, but it is so much worse now. 

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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Jun 12, 2012 09:02AM dogsandjogs wrote:

So for those of you who have finished with any of the AI's, do all your joints get back to normal?.

What about all the other SE's? Do they go away as well?

I sure hope there is no permanent damage to my (already osteoporotic) bones----

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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Jun 12, 2012 09:54AM camillegal wrote:

Dosand jogs--I remember when all this started and i was told (after all my tests) that I had some arthtitis---then after all the chemo and had tests I was told I was loaded with arthritis. Now it's worse and I can't help but think what has all of the treatment done??

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 12, 2012 10:31AM MaryNY wrote:

Camillegal: when you said you were "low on pot" I thought aha, maybe that's what people are using to get through this.

I'm just three weeks in and so far the SEs are not too bad. I have hot flashes and night sweats. I had those while on Tamoxifen but the hot flashes seem to be less frequent but when they happen they are so much more intense. My face gets so hot that my glasses steam up! Leg cramping too, but started to eat bananas and not sure if it's a placebo effect but haven't had cramps since. The most troubling SE is an increase in my existing neuropathy. The neuropathy I have is a residual side effect of the transverse myelitis I was diagnosed with eight months before breast cancer. I was paralyzed completely on the right side from toes to waist. I had steroid treatment and intensive physiotherapy and learned to walk again. Tiredness, illness and temperature extremes aggravate the remaining neuropathy and chemo was not kind to it so I went back for more physio. 

Mary ~~ lumpectomy 8/10/2009, Oncotype DX 18, Chemo 10/28/09--2/1/10 AC*4, CMF*4 Dx 5/19/2009, IDC, 1cm, Stage IIA, Grade 2, 2/6 nodes, ER+/PR+, HER2-
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Jun 12, 2012 10:56AM ptdreamers wrote:

mopsy, your pathology report show the percentage of ER receptivity. I am also having some issues from the aromasin. I am wondering though if it is affected by the fillers. The name brand gives me less problems. One generic that I have been on seems to cause more. I have requested the generic made by the manufacturer of the name brand to see if it is any better. My next refill should be this generic and I will see.

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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Jun 12, 2012 01:45PM dogsandjogs wrote:

What exactly is in the fillers? 

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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Jun 12, 2012 01:59PM stephN wrote:

New symptom since starting aromasin, carpal tunnel syndrome.  My hands go numb all the time.  Seriously, these drugs are bad news.  I know they are good for cutting breast cancer risk, but at what point does the risk of everything else outweight the benefit of cutting your breast cancer risk?  

DX 7/12/11 DCIS w/IDC microinvasion, Stage 1, Grade 3, 0/1 nodes, ER+/PR+
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Jun 12, 2012 03:38PM Trisha-Anne wrote:

Yes Mopsy - my path report shows the number of cells stained and while there's no actual percentage named it says whether it's weak, moderate or strong.  My IDC is strong while my ILC is weak to moderate.

Trish

I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 12, 2012 05:10PM camillegal wrote:

MaryNY hhahahaha  I didn't think of that--and usually i do. I hope u'r glasses get better too- and

Steph my fingers are doing that too==my whole body is one big ball of pain lately more than usual. In my head all I hear is me moaning--at least I hope it's in my head

These meds are brutal (sp) but then again none of this has been a walk in the park.

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 12, 2012 06:37PM ptdreamers wrote:

dogs and jogs, all drugs have the active ingredient(in this case exemestane) and then fillers such as lactose,dyes etc. generic drugs are allowed to have the same main ingredient(exemestane) but cannot have the same fillers exactly. For some people it is not the active ingredient that is causing problems but whatever fillers they use. That is what I'm trying to find out. Hope this makes sense. Let me know if it doesn't.

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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Jun 12, 2012 07:07PM dogsandjogs wrote:

Thanks ptdreamers!

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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Jun 12, 2012 08:04PM camillegal wrote:

Ptdreamers that does make perfect sense and I ever knew or heard of that.So sometimes the generic can react differently that's the reason? Thanks for the info--u must do a lot of oh geeze I can't think of the word and I held it here for a whike--u know what I mean I hope. LOL

Dx 2007, Stage IV, 24/38 nodes, HER2+
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Jun 12, 2012 11:07PM ptdreamers wrote:

camillegal, Yeah it is. Just like we all have different allergies we can react differently to the drugs we get . I am trying to get the other generic made by Greenstone because it is made by the same manufactuer as the name drug Aromasin. I am hoping that it is the fillers in the generic I am taking that cause some of my problems. I went back on the real stuff for a couple of weeks and it seemed different. Maybe just wishful thinking but I figure it couldn't hurt to see. I will be on this for four and a half more years if I can tolerate.

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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