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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Arimidex - Coping with the SE's

Topic: Arimidex - Coping with the SE's

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Jul 28, 2010 12:22PM - edited Oct 12, 2010 09:50AM by Lowrider54

Lowrider54 wrote:

Not just for Arimidex but all the Hormonals - se's are so similar so coping with them should also be similar and the remedies offered should work for any of the Hormonals - don't go away, read on if you are taking any of the hormonal treatments.... 

For those of us who are taking this potentially life saving/life prolonging drug, it does not come without side effects.  There are some very lucky folks who don't have any...GREAT!  But for those that do, lets share how we cope with the hot flashes and night sweats and stuff.

The 'Arimidex' thread covers more than just side effects and coping - there is much debate over it going generic and the effectiveness of its use.  I am putting this up in hopes that new users can find the answers concerning the se's easily.  Of course, please visit the Arimidex thread for more information concerning the statistics, research and controversy surrounding many of the AL's and new treatments we are being offered today.

Treatment is always a personal choice - if Arimidex is your choice, these kind folks can help you manage some of the issues that some with taking it.

I elected to take a low dose of Effexsor to aide with the hot flashes and night sweats.  It worked very nicely for me.  Water intake and walking assists with the possible joint pain.  I eliminated as much gluten from my diet as I could (that stuff is in everything....lol) and did not experience weight gain - I did experience 'weight re-distribution' however - it seems to go to the tummy.  I haven't found a good solution for that yet.  Cool

Good Luck All!

Hugs

LowRider

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Jul 28, 2010 12:45PM JO-5 wrote:

LowRider,

I hope this thread works for all of you on Arimidex. Too bad the other one had to go the way it did.

I have been off Arimidex for over a year. I did the 5 yrs. and had lots of experiences with it. I will watch this thread and if there is any thing I can post that will help anyone with the se's I will be glad to try.

JO

No options on site for angiosarcoma from rads in 04, 2014,2015 wide excisions, June 2015 rt mx w/lat flap, necrosis debridement, graft from leg to chest (04 33rads w/3 boosts, Arimidex 5 yrs) Dx 4/4/2004, IDC, Right, 1cm, Grade 3, 0/16 nodes, ER+/PR+, HER2- (IHC) Surgery Lumpectomy: Right; Lymph node removal: Right
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Jul 28, 2010 12:50PM prayrv wrote:

Thank you for starting this thread.  Lowrider, you rock!

JO - you are a wealth of information, you rock as well

HUGS TO ALL!

T.

Dx 4/27/2007, IDC, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Jul 28, 2010 12:59PM Member_of_the_Club wrote:

My issue is hot flashes and night sweats as well.  Effexor is not an answer for me.  I've been on effexor, before I switched to Arimidex, and i had the rare side effect of night sweats.  So I know it won't help me.  Any other ideas?

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jul 28, 2010 12:59PM - edited Jul 28, 2010 01:00PM by kira1234

LowRider,

Thanks for starting this thread.  I haven't started Arimidex yet, but I have been told has soon as radiation therapy is over I will start. I am on the 5 day treatment, so Friday is my last day.I for one just am wanting to learn about the side effects, and some good ways to deal with them.   What is Effexor? I know you said you used it for the hot flashes, I already went through them 5 years ago, and they were bad, so not looking forward to them again. My poor family went through quite a time last time with the mood swings. Any info anyone can give me will be greatly appreciated.

Karen

Dx 6/1/2010, ILC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/9/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane)
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Jul 28, 2010 01:17PM - edited Jul 28, 2010 01:17PM by Janeluvsdogs

Hi Kira,

Since you are still considering Arimidex, be sure to investigate that there is no Overall Survival value demonstrated with this drug used as an adjuvant therapy. For sure, there is benefit if you are stage IV but not for newly diagnosed.

There is some small benefit for recurrence but not for survival from all causes. The drug is still experimental for overall survival.

Also, if someone tells you to take another drug (Efflexor) to cope with Arimidex, please remember the drug interactions have not been studied and those combining Tamoxifen with certain antidepressants died sooner. It took 25 years for them to study the fatal casualties of that drug interaction.

Good luck with your decision-making and kudos to you for staying informed.

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Jul 28, 2010 02:16PM chrissyb wrote:

Hi girls, happy to be here and soooo glad to be on Arimidex.  I too have used the ignore button and I hope the newbies learn how to use it also.   Doing the HAPPY DANCE.

I found my peace which gave me strength. 52 at dx. (Sugar Glitter Cheeks) Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Jul 28, 2010 02:17PM Lowrider54 wrote:

Hi Karen

Always be sure to check with the onc about anything anyone recommends to you.  Folks here will relate what has worked for them in hopes that it might work for you.  Everyone is different and that is what makes treating/preventing this disease so difficult.  It may take many different combination of things until the end result is acheived. 

When setting up any treatment plan, all of the treating physicians AND your pharmacy are connected and all the drugs are checked for interactions. 

There are some natural remedies but anything that contains hormones is not going to be suited for us.  Melatonin can aide in a more restful sleep, cranberry supplements can aide in liver, kidney and bladder function that some treatments can effect.

Effexsor is actually an anti-depressant which has an added effect that calms hot flashes and night sweats in some.  I am on a very low dose and with the stage iv dx, it has helped me greatly to cope with my dx.  I don't cry all the time anymore.  I have a pretty decent quality of life most of the time. 

Water is like magic.  Walking is great.  I found that even before I started the Effexsor, if I drank lots of water and took an evening walk, the night sweats diminished but I would still get the hot flashes but not as bad.  Others have said that after the first month or so, those things diminish quite nicely.  It took me 3 months of crying until I finally saw a shrink that specializes in bc mets patients - within a month and medication, I wasn't crying or sweating anymore.   

I have also tried to eliminate as much gluten from my diet - not easy since lots of stuff has it in it - but Chex cereals are mostly gluten free and you can now found things in the regular grocery store instead of having to make a special trip to the natural food store. 

Adopting a generally more healthy diet assists with everything. 

This is what worked for me - check with your treating folks to be sure things will be ok for you before trying anything. 

Success to All

LowRider

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Jul 28, 2010 02:27PM Claire_in_Seattle wrote:

For me, anastrazole is a drug with very major potential benefits, and minor side effects.  And so thrilled, that "lighter wallet" is no longer one of them.

I will gladly take a medication that reduces my risk of recurrence by 50%.

I think exercise is the magic bullet here.....both cardio and strength training.  And no, I don't have a "middle aged" body.

I won't know about the other stuff like cholesterol until I get my annual physical in a couple of months.  Meanwhile, I am still rebuilding strength.  I have been on for three months, starting the same week as I started radiation.

Have about 7 pounds I would like to shed, but these were divorce related, so from about 4 years ago.  I appear to be slowly losing weight as pants that were snug a month ago are now loose on my body.  Hope same is true of tight white cropped jeans soon!

Completed all treatment (AC +T, lumpectomy, radiation and 5 years of AIs - anastrazole). Now celebrating every single day for the wonderful life I have been granted. Dx 8/2009, IDC, Left, 2cm, Stage IIB, Grade 3, 1/21 nodes, ER+/PR-, HER2- (FISH)
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Jul 28, 2010 02:39PM Sue-61 wrote:

Hi all, and thanks for starting the new thread! My only issue is a bit of weight gain; I shall have to take Ruthbru's advice and get my butt moving! Sue

"Always maintain a kind of summer even in the middle of winter"~~~~~ Henry David Thoreau
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Jul 28, 2010 02:50PM kira1234 wrote:

I will have to talk to the  Dr. about Effexor, I like it deals with depression as well as hot flashes. I have never had problems with depression, but things seem so out of wack with me. I had another radiation session today and burst into tears. The ballooon area is getting all red and feels like I have a sun burn. I told the person who puts me through the scan and she said she would tell "him". After the next treatment I found out him was the nurse, and he forgot to tell the Dr. So now I have no idea what to expect.

Karen

Dx 6/1/2010, ILC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/9/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane)
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Jul 28, 2010 03:18PM JO-5 wrote:

kira1234,

You may not have hot flashes. I only had a few the whole time... but I did have "freeze flashes" where I got really cold - but that is a lot easier to cope with than the hot flashes.

I know two women personally and one never had any hot flashes and the other only had warm flushes.

Not everyone has se's with Arimidex. The se's come and go and not all at once.

I'll repeat on this new thread what I posted over and over on the other thread.

For the most part --- Side effects are easier treated than cancer. Hang in there -- it is doable!

JO

No options on site for angiosarcoma from rads in 04, 2014,2015 wide excisions, June 2015 rt mx w/lat flap, necrosis debridement, graft from leg to chest (04 33rads w/3 boosts, Arimidex 5 yrs) Dx 4/4/2004, IDC, Right, 1cm, Grade 3, 0/16 nodes, ER+/PR+, HER2- (IHC) Surgery Lumpectomy: Right; Lymph node removal: Right
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Jul 28, 2010 03:18PM kira1234 wrote:

Chrissyb,

Thanks for mentioning the igno button, I just had my daughter help me find it. Weight will be an issue for me as well. I already have about 40 pounds to lose. I see many of you talk about walking and exercise. I will be adding these to my daily swim, as well as weight lifting. Please continue with the great ideas.

Karen 

Dx 6/1/2010, ILC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/9/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane)
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Jul 28, 2010 03:23PM don23 wrote:

Thanks LowRider for starting this new thread. My only issue so far on A has been weight gain. I have gained about four pounds and trying real hard to take it off. I think I will take Claire's advice and start doing some strength training. Maybe that will help. I have only been on it almost four weeks.

Dx 4/10/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jul 28, 2010 03:26PM HappyTrisha wrote:

I'm here Low Rider!

Support for all of us who have chosen to use arimidex!

I'm happy to help out in any way that I can.  Arimidex for me has been a more than tolerable experience.  I'd dance with it forever if they let me!

I'M DOWN WITH CHEMO!
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Jul 28, 2010 03:30PM joycek wrote:

Started Arimidex first part of April.  Can't complain about too may SEs.  I didn't do radiation so I felt and my Oncologist also felt I should do the Arimidex.  There is no easy answer out there.  We are all individuals and each case is different and should be treated that way.  I am sorry the other thread got so hostile.  Going through the bc process is rough and breastcancer.org should be a place for information in a kind and considerate manner.  Hope this thread remains calm.  Warm wishes to all of you!!!!

Dx 2/23/2010, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 3/9/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Jul 28, 2010 04:14PM - edited Jul 28, 2010 04:16PM by ruthbru

Hi ladies, looking forward to spending time with a good, positive, supporting, smart group of ladies here. Kira, lots of people have few SE with Arimidex, so you just have to go in with a positive attitude and see what happens. I did have some hot flashes at first, but wearing lighter clothes, becoming friendly with fans and time have really evened them out. I was also kind of 'creaky' but have found that keeping moving has been the best thing for me. I do both cardio and strength training consistantly (both very moderately, I might add!). I haven't gained the dreaded weight or had any other awful SE either. Congratulations on finishing up radiation. I imagine you've been using some ointment quite religiously. At the end of my rads; when I was red, I slept with a fan trained right on my boob, and got a tiny personal fan and sat with that trained on my boob during the day (luckily I'm a teacher and was on summer vacation; don't know if that would have worked so well on a job!). You do have a sunburn but from the inside out. Give it about 2 weeks post radiation and it should start to feel and look better. Best of Luck to Us All! Ruth
"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 28, 2010 04:27PM pj12 wrote:

I am now taking a generic anastrozole made by Roxane. I'm happy to report no surprises. Same occasional hot flashes, always in the evening. A glass of ice water turns them around. I do have asthenia that I attribute to A. That is a general loss of strength, a feeling of being weaker and less steady. It is one of the less common SEs listed. There is no way to KNOW anastrozole is the cause for sure but all other things being equal.. I choose to blame the drug. I exercise a lot and feel like that is crucial to my continued well being. I take comfort in expecting to be one ball of fire when I finish the next 3 yrs, 11 months! And hopefully, cancer free :-)

Glad to have you all to complain to.... DH's ears get sore!

pam 

"Nobody told me there'd be days like this ~ Strange days, Indeed. " John Lennon................... Treatment: Lumpectomy, 36 Radiation, Arimidex, now Tamoxifen Dx 3/3/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jul 28, 2010 04:34PM kira1234 wrote:

ruthbru,

I like your idea of a fan. I am also a teacher, which has been a blessing, I haven't missed a day with the kids yet. I still have 4 more radiation treatments before I am finished.

karen

Dx 6/1/2010, ILC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/9/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane)
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Jul 28, 2010 04:42PM ruthbru wrote:

I finished radiation on a Thursday, started Arimidex Friday and Back-to-School workshops were the next Monday. All that was really good timing for me (if anything can be called 'really good' about this experience!) because I didn't have to miss any time with the kids during rads, and when I was done I didn't have any time to dwell on any SE that I might or might not be having with the Arimidex. I didn't have time for it!

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 28, 2010 04:50PM kira1234 wrote:

Ruthbru,

Boy does that sound like me. I finish Friday, will wedding shop with my future daugher in law next week, and back to school for teacher work shops the week after. I agree will not give me time to dwell on SE's either. I am so happy I haven't lost time with the kids. I have about 6 months of sick leave built up, but would much rather be working.

Karen

Dx 6/1/2010, ILC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/9/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane)
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Jul 28, 2010 04:54PM Lowrider54 wrote:

One other thing I forgot to mention...if you have a fur child, you have to keep a real close eye on those tiny little pills - if one flips on the floor, you will move heaven and earth to find it so your fur child won't get it and this could definately result in being late for whatever you have to go to...don't know if you can consider it a se or not but it is something to make sure to be aware of...xxoo

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Jul 28, 2010 05:03PM kira1234 wrote:

Well that is something to be aware of. We have 2 fur babies who love to eat anything we drop.Laughing
Dx 6/1/2010, ILC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/9/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane)
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Jul 28, 2010 05:25PM Dilly wrote:

Hi Karen, a lot of people have good luck with emu oil.  I tried that, and ordered Miaderm, but it wasn't quite enough and I had one of those same experiences on the table, last Friday.  They gave me some Biafine and 2 days off, and so today's tx leaves me with 5 full tx to go.  The Biafine felt very soothing on my skin.  I'm hoping the Biafine + emu + cool compresses or cool paks dry, will help.  You might ask your team to recommend some prescription-strength.cream. 

After rads, I will be starting Arimidex and hoping for the best.  Thanks to all who provide tips and hints to help work through learning to get along with these meds.  

Kathryn

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Jul 28, 2010 05:45PM - edited Jul 28, 2010 05:47PM by swimangel72

I've been on Arimidex for over 2 years - I believe the SEs come upon you slowly - and cumulatively over time. I didn't have any problems at all the first year - no hot flashes or joint problems (other than my bum hip which a week in Florida cured). But this summer, it all caught up with me - not hot flashes - but awful joint pain over my entire body and tiredness to the point I felt as old as my mom (85 years old). So my onc said I could take a "vacation" as long as I agreed to getting a Pet scan to rule out any problems - I go on Friday - it'll be my first Pet scan, so I'm a bit nervous.

I hope there are more positive stories about Arimidex and women who have been able to live well the entire 5 years on it.............I'm feeling so much better (energy level is much higher) now that I've been off it for about 3 weeks - the bone/joint pain is getting slowly but surely less and less - but unfortunately my onc will be putting me back on it next month, sigh...........I don't want to switch to another AI with unknown SEs - "the devil you know is better than the one you don't know"...........but I'm not looking forward to another 2.5 years on this drug.

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53 Dx 2/5/2008, IDC, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Jul 28, 2010 06:18PM Cowgirl13 wrote:

I started Arimidex in feb and was having debilitating joint pain.  I stopped all sugar 6-8 weeks ago and the pain is gone.  After feeling so terrible, it was a piece of cake to give it up.  So glad i found this solution.

Dx 5/28/2009, IDC, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jul 28, 2010 06:44PM vangoghpro wrote:

Hi,

I have been on Arimidex for almost one year. I have had the hot flashes and the joint pain. The pain is manageable with two Aleve in the morning and evening. A recently developed problem is the muscles and bones in my hand just "freeze up" after gripping a spoon or a popsicle stick. I have to press my hand on a solid surface to make the problem go away. I also cannot hold up or extend my left arm very long without a great deal of effort. I am glad to say though that, as a horse rider, I am still able to climb into the saddle.

 Thanks for the information about gluten and sugar. I am going to read all the ingredients of foods I regularly eat for gluten. I can't make any promises about all the sugar ...

Dx 2/11/2009, IDC, 3cm, Stage IIB, Grade 3, 1/15 nodes, ER+/PR+, HER2+
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Jul 28, 2010 07:29PM Member_of_the_Club wrote:

There is a study going on somewhere about the benefits of exercise for dealing with the side effects of AIs.  Anecdotally, it seems to help with joint pain.  

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jul 28, 2010 07:49PM ruthbru wrote:

 I bought one of those daily pill holders and put my weekly supply in it. That way the cats can't get at them ,and I don't have to remember if I took my daily pill or not; if the 'Wednesday' slot is opened and the pill is gone; then I must have taken it Wink!

Karen, I wanted to miss as little school as possible too, and not just for the kid's sake. I felt it was much more healthy for me mentally to have work to focus on.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 28, 2010 08:20PM - edited Jul 28, 2010 08:24PM by ronqt1

HI Lowrider: I was nervous I could not find the new thread and even pm'd Sunflowers where to find it. Somehow I got here.

 Sunflowers, I found it. Glad to be here with all of you. I go back to onc on the 4th to see if I will continue on A or go to Femara. You guys are great and if I have to change I will miss all of you as little as I post.

After reading all the nonsense from the old thread, I decided to go to gym and get my frustrations out. Did eliptical for 15 minutes and treadmill for 10 minutes.  Best of all I found this site.

Love and hugs,

Dx 10/9/2009, IDC, <1cm, Grade 1, ER+/PR+, HER2- Hormonal Therapy 10/29/2009 Femara (letrozole) Surgery 10/29/2009 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 3/9/2010 Reconstruction (right) Surgery 8/1/2011 Reconstruction (right): Nipple reconstruction Surgery 10/2/2012 Reconstruction (right) Surgery 11/30/2012 Reconstruction (right) Surgery 2/24/2013 Reconstruction (right) Surgery 7/14/2013 Reconstruction (right) Surgery 11/19/2013 Reconstruction (right) Surgery 6/12/2014 Reconstruction (right) Surgery 9/9/2014 Reconstruction (right): Latissimus dorsi flap
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Jul 28, 2010 08:34PM ruthbru wrote:

Ronna, you can come here no matter what you are on!! Femara and Arimidex are 'kissing cousins'; and, anyway, I believe this thread is all about people who want to support each other; which is way more than just the pill you happen to take. Hugs back to you! Ruth

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-

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