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Topic: Bottle 'o Tamoxifen

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: Nov 26, 2007 03:02PM - edited Nov 15, 2017 01:59PM by Moderators

ashaby wrote:

Dear All, (and Layne are you there?)

Got my Tamox today and will start in a week. Where are my tamoxi pals? It says weight loss for one of the side effects. Now that's a good thing. Basha

Edited by Mods to add content from the main Breastcancer.org site's section on Tamoxifen in Pill Form (Brand Name: Nolvadex): Benefits, Side Effects and More

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Nov 28, 2007 05:20PM Harley44 wrote:

AWB,

I wanted to take Evista in addition to an AI, but I guess that hasn't been tested yet...

Good Luck!

Harley

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Nov 29, 2007 08:40PM Barbeqrn wrote:

Hi, sorry I am late joining you all...I just started with the Tamoxifen therapy Nov 26th and my literature said "weight loss" too...oh well, the thought of not watching the diet was nice for a short time!!!!

Harley, I haven't heard from you in awhile as I have been on the rad thread for the most part! I hope yo are doing well and that you are happy with your surgery results.

I too am getting a small amt of hair back...weird thing though is that 4 weeks after chemo I am missing eyelashes on the bottom of one eye and about half on the other! I wonder why the delay...how long does it take to grow lashes back?

Barb

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Nov 29, 2007 09:03PM Harley44 wrote:

Barb,

My eyelashes are still very short and VERY sparse!  When they occasionally fall out, they are very short, and I often wonder if I will ever get full, long eyelashes again.  Probably not, since they were short and sparse from the thyroid condition I have...  oh, well!

My hair is VERY SHORT, but it seems longer and thicker in the middle, where I would sport a mohawk, if I had had the nerve to cut that style when I lost my hair!   lol 

I am doing great!  It's 7 weeks post chemo, and 3 weeks post surgery.  The reconstruction is starting to look good!  At first, they didn't look AT ALL like breasts, just two lumps!   Now, though they are starting to look like breasts.  My dh told me that the ps told him that they will be 'molded' into breasts by me wearing a bra almost all the time for about a month or two.  I am just now finding a way to sleep on my side, because I just can not sleep on my back! 

I guess you haven't heard much from me, since I didn't get rads.  I guess we will hear more from each other now that we are both taking the Tamoxifen train!  I started Tamoxifen on Nov 18th.

Good Luck!

Harley

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Nov 30, 2007 01:41AM CapeTownJanine wrote:

Good morning Tamox-ladies!

I've been on the Tamoxifen-train since 5 November, and initially there were no SE's. I almost thought that I might not be metabolizing it, and would have to stop (I can dream, can't I?).

Now the "power-surges", as Lynn calls them, have started, but not too hectic. What really gets up my nose though, are those night sweats. I really, really love my sleep, and never had a problem. I could even sleep standing up! But now, I wake up drenced, and bothered. Anyone with some advice on how to curb it?

Another thing, I've been having some lower-abdominal pain. I don't know if I'm just blaming everything on the Tamoxifen, or if I should be worried about it. I'm seeing my onc. on 14 Dec. so will have to mention it to her.

And weight-loss on Tamox.? I can do with some of that...

Have a great weekend ladies!

Janine

Initial dx: Feb 2007; tx: Mastectomy, Chemo, Radiation, Tamoxifen. Bone Mets dx Mar 2012; tx: Ooph, Radiation Dx 2/16/2007, ILC, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/30/2012, ILC, Stage IV, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 30, 2007 07:29AM hopefor30 wrote:

Hi guys,

I too will be starting tamoxifen in December -- got the script yesterday, but decided to wait a few days before filling it -- I am just starting to feel good post DIEP surgery and I hope that the tam doesn't make me feel bad -- that would be a bummer.

After my diagnosis and surgery, I have already lost 15 pounds -- mostly from anxiety and not eating -- I feel great weight wise and looked at it as some form of compensation for getting BC (I'd still rather be heavier of course), but now I hope I don't gain it back -- will only depress me more -- so here's to hoping I can keep it off.

M.

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Nov 30, 2007 02:54PM petjunkie wrote:

Hi All,
I started taking tamoxifen two weeks ago. My oncologist told me that pre-menopausal women usually have fewer side-effects (I'm 33). I have joint pain, especially in my knees. No hot flashes yet, hooray!

Everyone I have talked to warns of weight gain, especially around the belly. I already am overweight and tend to gain in my abdomen, so I'm not excited about this. Yet here I am sitting on the couch when I could be exercising ;-)

Anyone doing tamoxifen without having gone through chemo? It's hard to tell which side effects people might be having chemo drugs vs tamoxifen.

Karen

Dx 10/2007, DCIS, 6cm+, Grade 3, 0/5 nodes, ER+/PR-, HER2+ Dx 10/2009, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2+
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Nov 30, 2007 05:50PM bomber410 wrote:

Just a short note to say Hello again.  I'm sitting here with my bottle o' tamox...  I will begin tomorrow morning, December 1.  I'm okay with having hot flashes but don't want hair thinning or weight gain.  Of course, I'll also pass on that risk of blood clots and strokes.  Can I pick and choose my side effects? 

Have a good one.

Debbie 

You can visit my CaringBridge site at www.caringbridge.org/visit/deb... Dx 3/29/2007, IDC, 2cm, Stage II, Grade 2, 1/10 nodes, ER+/PR+, HER2-
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Nov 30, 2007 06:24PM JapanLynn wrote:

Good morning from southern Japan, ladies--

I've been reading on these boards about not taking prozac and tamox together...I've been on prozac for about 4 years, first for mild depression and now to help w/ menopause symptoms.  During BC treatment, I saw a million doctors and filled out a million health surveys...can't honestly remember whether I told my onc. about the prozac.  I stopped taking it a couple of days ago and faxed a letter to my onc. for advice on whether to make it a permanent holiday.  We will have a fax and/or phone relationship while I'm here, and I'll see him next summer.

I know a lot of people are on effexor along w/ tamox.; we'll see what he says.  Maybe I could try going without an antidepressant--the idea appeals to me, but if my period decides to make another (increasingly rare) appearance, I'm in danger of losing all my friends due to mood swing scariness.  Stay tuned...we'll see.

Question: How often do you stage I and II ladies see your onc.?  Just curious since my situation is different.

Enjoy your Friday evening...I'll be doing laundry and cleaning house on Saturday while you sleep.  Take care...

Lynn

Dx 7/30/2007, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Nov 30, 2007 06:55PM - edited Sep 6, 2010 06:04PM by yellowrose

-

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived though this horror. I can take the next thing that comes along.' Eleanor Roosevelt
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Nov 30, 2007 09:55PM chemo072 wrote:

txgirl - good job on the weight loss though!!  I know it's slow, but at least your making headway, which is more than I can say. :(

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Nov 30, 2007 10:30PM Cynthia1962 wrote:

Layne - I'm doing good sleep wise.  I'm back on the Ativan, but half a tablet is usually enough to get me to sleep.  I've started taking the Toprol earlier in the evening because it was causing me extreme acid reflux (guess that's why they say to take it with food).  I had an echocardiogram today, but I don't see my dr until the 20th so I'll have to wait to hear what the results are. 

I hope you don't have an issue with the coumadin.  My girlfriend who is on coumadin says she bruises so easily because of it.   

I'm sure you'd rather have been sleeping, but Skyline Drive in the morning sounds like a beautiful experience.  My husband and I drove from CA to MA via I-40, and I wanted to do the Skyline Drive when we got to VA but by then my husband just wanted to hurry to MA.  We both regret that we didn't do it.  If you have to be driving around in the morning, it's wonderful that you have such a beautiful park near by.

Karen - I have joint pain, but I had it before I started on the Tamoxifen so you're right about it being hard to tell what's from chemo and what's from Tamoxifen.  I haven't gained weight, but I do have belly fat now.  It developed when I was on Taxotere, I think.  I'm assuming it's from chemopause and the lack of estrogen.   

Debbie - oh, to be able to choose our side effects.  lol  I don't have any sign of hair thinning so I hope it's not a late side effect.   My hair isn't thick to begin with. 

Lynn - my onc considers me advanced Stage 2 and I see him every 3 months. 

txgrl01 - I'm sorry to hear about your endometrial issues.   Please let us know what you find out.

Layne & Debbie - welcome aboard the T Train tomorrow!  Wish we could meet for some chocolate and cocktails in the lounge car.  Smile

Cynthia 

Mets to bones Dx 1/3/2007, IDC, 2cm, Stage IIIA, Grade 2, 4/18 nodes, ER+/PR+, HER2- Surgery 2/16/2007 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 3/19/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/6/2007 Breast, Lymph nodes Hormonal Therapy 11/9/2007 Hormonal Therapy 11/1/2010 Arimidex (anastrozole) Dx 11/11/2010, IDC, Stage IV, ER+/PR+, HER2- Chemotherapy 6/1/2012 Xeloda (capecitabine) Chemotherapy 11/14/2012 Navelbine (vinorelbine)
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Dec 1, 2007 09:26AM my3girls wrote:

Hi to my tamox friends!

Harley...be patient with the eyelash and eyebrow return.  I too wondered if they would ever come back.  I had my last tx on 8/29 and they still continued to fall out after that.  But now 3 months post tx..and they are back!! My eyelashes still have a little longer to grow..but they are full, just like before!! So happy...so yours will be too!

Layne..Enjoy your visit with your mom!  Where in Ohio?  I am in NE OH.  Thanks for the welcome to the tamoxi-train!

txgirl...Wow...good for you! 15lbs in 3 mos! I think those are great results! That is the healthy way to lose..slowly!  Your calorie intake is really low...maybe that is what I need to do!  Like you..I too gained some weight prior to dx...wonder if it had anything to do with the cancer being there?

Cynthia...I also got my belly fat on taxotere.  Hardly had any before that tx. Darn!!

Have a great day ladies...it's Saturday...but I am workingFrown

Worry is for "shit"! Live, Laugh, Love! //unilateral mast//reconst. 2/4/08 Dx 3/6/2007, IDC, 3cm, Stage II, Grade 2, 0/22 nodes, ER+/PR+, HER2-
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Dec 1, 2007 08:17PM jackiebrown wrote:

Hi everyone,
I started Tamoxifen about 2 weeks ago. I had trouble sleeping for a few days and very little appetite but it seems to have passed. I do have aches in my legs though, has anyone else experienced this? I finished chemo 5 weeks ago and am not sure if the aches are from Taxol or Tamox or something else.

Does anyone know how long the effects of chemo linger ... ?

Jackie

Dx 5/29/2007, IDC, 2cm, Stage IIA, Grade 3, 2/8 nodes, ER+/PR+, HER2-
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Dec 1, 2007 09:47PM honeygirl wrote:

Hello Ladies , I'd like to join the tamox train! I started in Sept. I have had alot of hot flashes. To the point of my head is dripping wet! Sometimes hourly. Not fun. Especially at work. I just started effexor two days ago. My onc wanted to see if the hotflashes would stop on their own , but they didn't. So I sure hope it helps. He also mention getting a transvaginal ultrasound done. I never heard of this. Doesn't sound to comfortable to me. Anyone that has had one and would like to share , I'd appreciate it.

Hope you're all having a great weekend. Melody

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Dec 2, 2007 08:13AM ashaby wrote:

Hey Layne,
I just swallowed my first Tamoxifen. Yum yum. How was yours?

Basha

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Dec 2, 2007 08:17AM ashaby wrote:

Hey Layne,
I just swallowed my first Tamoxifen. Yum yum. How was yours?

Basha

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Dec 2, 2007 08:43AM leaf wrote:

Hi honeygirl. I have had 2 transvaginal ultrasounds.
The first wasn't so bad because they didn't give me the right instructions, and I drank my 2 liters of water about 15 minutes before the procedure.

For the second one, see community.breastcancer.org/top...

I'd recommend cheating. (naughty me.)

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 2, 2007 08:45AM my3girls wrote:

Hey Melody...welcome to the train ride!! I had several hot flashes last night!! Always seem to be worse when I am in bed!

Have a great day...talk with you ladies later!

awb...how are you doing?

lisa

Worry is for "shit"! Live, Laugh, Love! //unilateral mast//reconst. 2/4/08 Dx 3/6/2007, IDC, 3cm, Stage II, Grade 2, 0/22 nodes, ER+/PR+, HER2-
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Dec 2, 2007 10:11AM drgnfly wrote:

Is there room for one more??I started my tamoxifen 5 days ago. I had been having bad hot flashes since my second round of chemo and I haven't noticed any difference, but I don't know how long it takes for the side effects to start. I am 16 days past my bilateral mastectomy. I am really hoping to get my drains pulled tomorrow morning! I will be glad to have the support of all of you gals as we go through the medical ups and downs (hopefully more ups!!) :o)

Dx 4/28/2007, IDC, 3cm, Stage IIB, Grade 2, 1/5 nodes, ER+/PR+, HER2-
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Dec 2, 2007 03:59PM Harley44 wrote:

Cynthia,


Did I read one of your posts that mentioned that you were having some achiness from the Tamoxifen? 

I have started feeling achy, and am just wondering if it is from the Tamoxifen, or just usual aches and pains from getting older, and maybe because I have started to walk, and even run again.  I like to walk fast...  but I want to start running soon, even though I have never been able to run continuously for any length of time.  Except  for the 5 K  I ran 2 years ago with my dh.

I hope you are feeling great!  

Harley

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Dec 2, 2007 05:02PM jacki45 wrote:

Hello from England!!

Been on Tamoxifen since about May (memory shot since starting it!!), so I'll be joining you on that train ride if that's ok?

Suffer from aching joints (Ibuprofen helps me - high doses though) and I've put on weight, but possibly cos I can't move around quite as well as I could. Feel like an 80 yr old in a 46 yr old's body, especially in the morning and last evening!!

I've started having hot flashes (we call them 'hot flushes' in England -- whatever, they're nasty!!).  I'm forever ripping my top off around the house and then can't find it again when I cool off! Luckily I show a bit more restraint when I'm out and about :-)

Nice to meet up with you all.

love,

Jacki x

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Dec 2, 2007 05:16PM - edited Dec 2, 2007 05:17PM by NativeMainer

I started tamoxifen in October.   I didn't have chemo(refused it), so any SE I develop will be from the tamoxifen.  So far, no SE.  NONE.  I do also take prozac and neurontin (prozac for years, neurontin for LE pain) both of which have been used for tamox SE, so maybe any SE are just being masked.  But I'm really, really scared the tamox isn't doing anything for me.  I'm even more scared of changing from prozac to another antidepressant since I went through so many to find one that works. i've already decided that if I have to chose between treating the bc and treating the depression, I'll treat the depression.  I see my onc early Jan and will find out about CYP2D6 and/or endoxifen level testing.  To answer someone's question, the tumor removed was classified stage 2, and I will be seeing the onc every 3 months. 

"I have come to believe that caring for myself is not self indulgent. Caring for myself is an act of survival." Audre Lorde Dx 3/9/2007, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/14/2007 Lumpectomy: Right Surgery 3/28/2007 Lumpectomy: Left Radiation Therapy 4/9/2007 Breast Hormonal Therapy 10/4/2007 Hormonal Therapy 4/24/2008 Arimidex (anastrozole) Surgery 8/14/2008 Mastectomy: Left Surgery 6/20/2010 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Dec 2, 2007 06:35PM jackiebrown wrote:

I have had achiness in my body too, went for a long walk yesterday and it seemed to improve, not sure if it's just a coincidence though.

Hot flashes/flushes so far are easier than they were during chemo.

I've been on tamox for 2 weeks now, is this enough time for symptoms to present?

Jacki - I'm in England too!!

x Jackie

Dx 5/29/2007, IDC, 2cm, Stage IIA, Grade 3, 2/8 nodes, ER+/PR+, HER2-
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Dec 2, 2007 06:45PM awb wrote:

Jackie--I do remember a horrible yeast infection within the first month on tamoxifen, but it never happened again.  I didn't really notice any hot flashes or insomnia for about 2 or 3 months and they were both really mild.  I had to have a total hysterectomy a few years ago, so now my oncologist feels that any SEs I have (alot of achiness) are more due to the loss of estrogen from not having any ovaries, but my gyn and pcp fel it is from the combination of the 2 (I tend to agree, it only makes sense).

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Dec 2, 2007 06:47PM hlg2314 wrote:

Hello Everyone,

Can I join the train too?  I have been on the Tamox since May. I have to say that I gained a lot at first but I am on a water pill so I have maintained.  My OC said that I do have to exercise.  So I will be turning a new leaf at the first of year.  I never heard anything about losing weight though.  But, hey you never know.  Everyone is different.  I will have to say the hot flashes were awful.  But he put me on Effexor and that worked.  Other then that not too bad.  I did have a period though so he started me on the Zoladex shot too.

Other then that I will be on the train for 4.5 years.

WOOHOO!!!!

XOXO

Heather

Heather Dx 10/27/2006, DCIS, 1cm, Stage II, 1/17 nodes, ER+/PR-, HER2+
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Dec 2, 2007 06:49PM jackiebrown wrote:

Thanks awb, my symptoms so far have been really mild and I hope it continues this way. Achiness has been the worst of it but maybe that's left over from chemo too.

Dx 5/29/2007, IDC, 2cm, Stage IIA, Grade 3, 2/8 nodes, ER+/PR+, HER2-
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Dec 2, 2007 07:14PM honeygirl wrote:

Hi ladies , Heather , Jacki and Jackie , lovely to meet you. I think there is a connection between achey joints and tamox. I notice it too. Oh Jacki , I know what you mean about ripping you top off. I have taken off my nightgown when they hit , and after its over , I couldn't find my ng and I was cold!lol I'm on effexor too. I am still getting some , but not as bad. Well girls have a great evening.xxx Melody

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Dec 2, 2007 07:21PM Cynthia1962 wrote:

Harley - yes, I'm having achiness, but I had it before I started the Tamoxifen so it could still be from chemo.  My fingers are stiff and achy at night, but get better during the day.  I do think I may be developing insomnia, but I'm not sure if it's the Toprol or the Tamoxifen.  I'm leaning toward the Toprol because it was right around then that it started.  I'm having more of the RLS, too. 

Anyone feeling fatigue that they think is due to the Tamoxifen?  I just don't know what to attribute it to.  I seriously want to stop taking the Toprol, because I just don't know what side effects it's causing, but I suspect it's the insomnia and RLS.

Take care everyone and welcome aboard all our newcomers!

Cynthia 

Mets to bones Dx 1/3/2007, IDC, 2cm, Stage IIIA, Grade 2, 4/18 nodes, ER+/PR+, HER2- Surgery 2/16/2007 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 3/19/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/6/2007 Breast, Lymph nodes Hormonal Therapy 11/9/2007 Hormonal Therapy 11/1/2010 Arimidex (anastrozole) Dx 11/11/2010, IDC, Stage IV, ER+/PR+, HER2- Chemotherapy 6/1/2012 Xeloda (capecitabine) Chemotherapy 11/14/2012 Navelbine (vinorelbine)
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Dec 2, 2007 07:23PM - edited Dec 2, 2007 07:25PM by jackiebrown

Hi Melody, I find I sleep with a pile of clothes under my pillow so I can strip/add when needed, also easy to find there! I always have my knit cap and socks handy. Also, during chemo I used to carry a paper fan in my bag when I went out and it really helped cool me off. It was a fabulous red paper one, may have looked a bit eccentric but really did the trick. Hot flashes for me now are milder, it may help that the weather is colder! I can't seem to get rid of achy ankles though ...
xJackie

Dx 5/29/2007, IDC, 2cm, Stage IIA, Grade 3, 2/8 nodes, ER+/PR+, HER2-
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Dec 2, 2007 07:25PM honeygirl wrote:

Hi Cynthia , you know , about a month after my last tx of chemo , my energy level was back as good as new. But after I started tamox. I noticed I felt fatigued. Its not real bad , but not as energenic as I was. Is fatigue listed as a SE?

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-

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