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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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Dec 2, 2007 08:16PM Cynthia1962 wrote:

Honeygirl - yes, fatigue is listed as a side effect, but I don't think it's one of the more common ones.  Like you, my fatigue isn't bad, but it's enough that I'm spending more time sitting on the couch than I'd like.

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 08:16PM Harley44 wrote:

Cynthia, I have been feeling more fatigue, too, but my thyroid is off again.  I'll be seeing my primary care dr. on Thursday, so I will find out if I need a dose adjustment on the Synthroid. 

Thanks for confirming the achiness may be from the Tamoxifen.  It is getting colder here, so maybe I'm just noticing the aches and pains more, due to the cooler weather.

Harley

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Dec 2, 2007 08:18PM Harley44 wrote:

Debbie,

Hi there, and welcome to the T. train! 

No kidding about the hair...  I am just starting to see some growth, and I don't need to start losing it again!

Best wishes,

Harley

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Dec 2, 2007 08:22PM Cynthia1962 wrote:

Harley - the weather could be a factor.  My onc told me to try to keep my joints warm so I sometimes sleep with gloves, but my fingers are still stiff.  I did experience sore muscles and all around achiness after taking the kids downtown one night to the tree lighting ceremony, and the only thing I can think of was the cold even though I felt warm enough at the time.  I think the colder weather is helping me have less hot flashes, at least.

I'm sorry to hear that you're feeling more fatigued, too.  My thyroid results were normal, so I can't blame it on that.  I wish I could stop the Toprol just to see if I feel better.  I'll wait to see what my dr says later this month. 

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 08:27PM Harley44 wrote:

Cynthia,

None of this stuff is easy, is it?  I sure wish we didn't need to take so many different medications.  I wish you could stop taking the Toprol, too.  You noticed these other se's after adding it, so that is probably the cause. 

Pretty soon, I'll need an entire notebook just to list all the different medications that I take daily, whenever I see a new dr.!  

Here's hoping that our fatigue issue will resolve itself soon!

Harley

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Dec 3, 2007 07:59AM my3girls wrote:

I too have some achiness in my legs and arms.  I have had this before Tamox..so not sure if it is a s/e.  I haven't really noticed weight gain, but I have noticed not being able to lose it!  I have cut back my calorie intake, started running again, and really am watching everything I put in my mouth!! Very fustrating!  Not sure if it is a s/e of tamox...or could be my age (47) and the fact that I have been thrown into menapause.

Jackie...I too sometimes I am moving like an 80yr old instead of my age!! In the morning getting up..just walking across the room...my ankles, feet, legs...hurt..until I get moving. I truly hope this getts better!  My sleep has not been very good either.  I have a hard time falling and staying asleep!

Oh...got to love this!! haha

xoxo

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 3, 2007 08:42AM hlg2314 wrote:

I was feeling tired and worn down also.  I started taking One A Day vitamins for energy.  They help.   Is anyone else taking a Calcium Supp as well?  Also, just an FYI if anyone is on any type of cholesterol meds-can cause joint ache.  Fatigue can also contribute to joint ache as well.

Take care,

Heather

Heather Dx 10/27/2006, DCIS, 1cm, Stage II, 1/17 nodes, ER+/PR-, HER2+
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Dec 3, 2007 11:54AM prayrv wrote:

Good morning ladies,

I started my tamoxifen in early October and so far my only se's seem to be insomnia (waking up one time per night for a week), warm feelings during the day - I wouldn't call them hot flashes yet, and a few episodes of night sweats.  We'll see how it progresses as the years go by. sigh   Hope all are well.

Take Care

Trish

Dx 4/27/2007, IDC, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Dec 3, 2007 12:10PM awb wrote:


I have mild hot flashes, insomnia, and achiness, all annoying but tolerable.  Have been on tamox for 4 years.  My oncologist says tamox "doesn't cause achiness, the AIs do", but my gyn and pcp disagree and say it definitely can be contributing to my aches and pains. Maybe I'lll see a difference when I finish the tamox (unless I go on something else and then it will be difficult to tell for sure), but some of the achiness could just be menopausal (lack of estrogen to lubricate the joints) and getting older.
"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 3, 2007 12:13PM - edited Dec 3, 2007 12:20PM by karol61

Awb,

Glad you've stayed with Tamox, I intend to take it for at least 5 yrs.  I do not want BC to recur nor do I want my bones to thin.

Sorry about the increased belly fat.  I've had it since my hysterectomy in 1983.  I exercise regularly and do yoga  BUT some belly fat is always there. 

.

Dx 3/22/2007, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+, HER2+
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Dec 3, 2007 12:23PM - edited Dec 3, 2007 12:23PM by karol61

Harley,

Yes,i feel like a branch of CVS with all the meds inside me. I guess we all have to deal with it. Tongue out

Dx 3/22/2007, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+, HER2+
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Dec 3, 2007 04:10PM JapanLynn wrote:

Good morning, ladies--

I've now been on tamox. for a month.  Night sweats are increasing, and yesterday I noticed more hot flushes (rather than flashes) during the day.  The weather has turned a little cooler here, and I tried turning on the heat at school...immediately I was dying, but when I turn it off I'm cold.  Oh, well...if this is as bad as it gets, I can't complain.  I like the idea of having a change of clothes under the pillow...sounds like a plan!

I'm taking a calcium/magnesium supplement twice a day, as per my onc.  Also, glucosamine chondroitin for joints--it helps with the pain.  Still waiting to hear from my onc. on whether to continue the prozac--from what I've been reading on this board and elsewhere, most drs. say don't take prozac and tamox., but some say it doesn't matter. 

Re: paper fans--they're all the rage here in Japan, and have been for thousands of years.  I fit right in to the local culture. :-)

Take care...Lynn

Dx 7/30/2007, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Dec 3, 2007 05:31PM Harley44 wrote:

karol,

I see we both were dx'd in March 2007.  Must be a popular month!


I agree.  I don't want to have thinning bones, but I will do anything I have to do to prevent recurrence.   bc really stinks!

Harley

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Dec 3, 2007 05:55PM MtnMama wrote:

I started my Tamoxifen the Sunday after Turkey Day (I figured I didn't want to spoil it with side effects) ... but none have appeared yet!  *knock knock*

I had hot flashes post chemo until about a month ago, and I've had joint pain since about a month post chemo, so I can't attribute the joint pain to the Tamoxifen (but boy do I feel like an old lady getting in and out of the car!)  If the hot flashes return I guess I know what they're due to.  I sure hope they don't though!

I took Benedryl to help me sleep through chemo hot flashes (on advice of my onc).  Worked great!

Dx 4/2/2007, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Dec 3, 2007 06:19PM jacki45 wrote:

Hi Jackie (from England !)

My first symptoms were nausea and extreme fatigue. But they went after a couple of weeks. The joint pain, forgetfulness, lack of concentration, and the occasional hot flush came later. Had a couple of night sweats but they went - thank goodness. Everyone's different so don't worry! There's some side-effects I haven't had. Would have liked to have passed by the weight gain, but hey-ho!!

I'm from Surrey. Where are you?

Hi to everyone else. I lived in the US for 12 years and went to college and got my teaching degree while I was there.

Anyway, off to take that lovely little white pill we're all so fond of....

Jacki xx

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Dec 3, 2007 06:21PM QueenSansaStark wrote:

Hi there! I'm hopping aboard the Tamoxifen Train! I started mine in the first week of November.

I don't know whether to attribute my side effects to chemopause (I'm 44 and this is likely it for my periods) or the Tamox. I get hot flashes, have been a bit stiff and creaky in my joints, and I'm also wearing my "cranky pants" a lot more these days. And I am gaining weight in the stomach area.

However, all this is a small price to pay for the cancer not recurring. I'm hoping an exercise program will get me back in shape and feeling more energetic.

There are two means of refuge from the miseries of life: music and cats. - Albert Schweitzer Dx 2/1/2007, IDC, 2cm, Stage IIB, Grade 2, 3/25 nodes, ER+/PR+, HER2- Surgery 2/26/2007 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 11/1/2007 Radiation Therapy Breast, Lymph nodes Chemotherapy Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 3, 2007 07:33PM dash wrote:

2 weeks after starting, I had insomnia for a week--no sleep whatsoever--just stayed up all night. I started taking melatonin and an ativan about an hour before the tamox and that fixed it. Other than that, The first 2 bottles went amazingly well with only mild hot flashes and leg bone achiness.  Into the 3rd bottle, I started headaches, heavy fatigue and some nausea because of reflux, I think. Oh and easy tears and crankiness and lots of short term memory loss. Sigh. I'm going to  *try* to continue on at least 8 months even with these symptoms. My onc said the problems may resolve by 6-8 months.

*crossing fingers* 

Lots of people talk to animals...Not very many listen, though...That's the problem. ~The Tao of Pooh
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Dec 3, 2007 07:51PM jackiebrown wrote:

Hi Jacki (from Surrey), I'm in London so not too far! Thanks for the description of your symptoms, glad to hear the fatigue doesn't necessarily persist.

How long does the sleeplessness last? I thought it would resolve after a few days if only out of sheer exhaustion, but so far I seem to be functioning on just a few hours a night and unable to sleep more. I could take an ambien but was on it on and off throughout chemo and am worried about never being able to sleep without it. Any other ideas for getting a regular good nights sleep?

Tnx !!
xx Jackie

Dx 5/29/2007, IDC, 2cm, Stage IIA, Grade 3, 2/8 nodes, ER+/PR+, HER2-
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Dec 3, 2007 08:14PM ShannonM wrote:

Hello ladies....I've been on tamoxifen for almost 8 months and I did not have to have chemo....just lumpectomy and radiation.  I do have hot flashes but they seem to be less frequent these past couple of months.  I put off even starting the tamox because my mom had such terrible joint pain from taking it several years ago...she had a limp for the last 2 years on it!  (She also had only lump and radiation.)  She has been just fine since stopping it.  So the thought of the joint pain has really worried me, but so far so good!  Not sure if age is a factor, she was 58 at diagnosis, I was 38.  I do feel like I've had some memory problems which my onc says is not from the tamoxifen, he says it's from going through this whole ordeal but who knows?!  All in all, I've been pleasantly surprised with the minimal side effects I've had and hope those little pills are doing their job!!   

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Dec 3, 2007 08:30PM MtnMama wrote:

Has anyone found the time of day taken has any bearing on side effects?  I've been taking them in the a.m. with my vitamins and Prilosec.  No insomnia thus far, but I'm only in week two.

Dx 4/2/2007, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Dec 3, 2007 08:59PM Sandraj wrote:

Hi Everyone,

  I started tamoxifen the first time in March and after 6 weeks developed radiation recall and had to stop it.  I started back on it about 5 weeks ago. The worst thing so far are the hot flashes. I also think it makes you tired. Otherwise, no problems. So I guess I'll be on the train with you guy for a long while.

Sandra

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Dec 4, 2007 01:46AM CapeTownJanine wrote:

Hi ladies!

I'm on the last pill in my first bottle o' Tamoxifen! If I have to take it for 5 years, 12 months a year, I have to take 60 bottles.

One down, 59 to go!

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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Dec 4, 2007 02:32AM CapeTownJanine wrote:

Hey ladies,

Has anyone else experienced problems with breathing while on Tamoxifen? I've noticed that by late afternoon, my throat feels as if it's closing up. This usually lasts until I go to bed. (I take my pill in the evenings when I go to bed).

I'm seeing my onc on the 14th of December, and will mention it to her. Or should I phone her before?

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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Dec 4, 2007 05:58AM JapanLynn wrote:

Dang...I missed my dose today.  This is the first time--I was sitting at school late this morning when I realized I walked out without it.  Oh, well...I'm off to put a sticky note by the doorknob to remind myself.

Ack, Janine...trouble breathing??  I think I'd call the onc now.

Sandra, what is radiation recall? 

Enjoy your day, ladies...I'm off to bed in an hour.

Lynn

Dx 7/30/2007, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Dec 4, 2007 08:22AM leaf wrote:

This article says that in their study, the half life of tamoxifen and its N-desmethyltamoxifen metabolite was 9 and 13 days respectively. This study was BEFORE the interaction/genetics study, so we don't know how variable these values really are, but in this study, it would take 9 days for the blood tamoxifen levels to decrease by one-half.
I don't think you missed too much by missing your dose. I'm sure there have been others who have missed a dose, Lynn.

1: Cancer Epidemiol Biomarkers Prev. 2001 Sep;10(9):967-70. Links
Correlation between tamoxifen elimination and biomarker recovery in a primary prevention trial.


Guerrieri-Gonzaga A, Baglietto L, Johansson H, Bonanni B, Robertson C, Sandri MT, Canigiula L, Lampreda C, Diani S, Lien EA, Decensi A.
Division of Chemoprevention, European Institute of Oncology, 20141 Milan, Italy.
We have shown previously that a reduction from the conventional dose of tamoxifen is associated with a comparable modulation of circulating biomarkers, including insulin-like growth factor-I and cholesterol. In the present study, we have correlated serum tamoxifen elimination with biomarker recovery in healthy subjects completing a 5-year intervention period. Tamoxifen, N-desmethyltamoxifen, and biomarker levels were measured at 0 (baseline), 2, 4, and 6 weeks after completion of treatment in 23 healthy postmenopausal women allocated to tamoxifen 20 mg/day and in 6 women allocated to placebo. Mean (+/-SD) serum tamoxifen and N-desmethyltamoxifen concentrations were, respectively, 141 +/- 50 and 226 +/- 77 ng/ml at baseline, 36 +/- 19 and 99 +/- 46 at 2 weeks, 20 +/- 15 and 61 +/- 37 at 4 weeks, and 12 +/- 9 and 36 +/- 26 at 6 weeks. Serum tamoxifen and N-desmethyltamoxifen half-lives were 9 and 13 days, respectively. Body mass index was associated positively with drug's serum half-life. Compared with baseline values, the percentage increase in total cholesterol, low-density lipoprotein cholesterol, and insulin-like growth factor-I 4 weeks after treatment completion was 5, 9, and 14%, respectively. No change during the 6-week period was observed in the placebo arm. Our findings indicate that the biomarker recovery is slower than serum tamoxifen elimination, suggesting that low tamoxifen concentrations may still exert a biological effect. In addition, the prolonged half-life of tamoxifen and metabolite provides the rationale for a weekly administration of the drug in a preventive context. However, the clinical implications of our findings remain to be defined.
PMID: 11535549 [PubMed - indexed for MEDLINE]

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 4, 2007 09:03AM jinky wrote:

Hi Everyone,
Finished my 5 years of tamoxifen.....then took one month of......
have been on famara 6 weeks with no side effects.....except the same hot flashes i have had since i had chemo 5 years ago...
The one big difference i do see if that a fog has been lifted....like i can really remember things now.....also think so much better......must have been the tamoxifen.....no weight gain or loss.....no hair thinning.....
anyway i am happy i got my 5 yrs in as at times i had so many
hot flashes i almost gave up.....clonidine a blood pressure pill helps some as i only have about 7 a day now.....it is worth it for me as i feel i am doing everything i can to fight this disease and if it come back i know i tried my best......everyone is different and will have different side effects with each medication......praying it stays like this but if it doesn't and i start having more pain than i have now then i am done.
Not everyone chooses to take these drugs and that is up to them and i respect their decision ...
Just thought i would like to encourage other going through hormonal treatment.
Wishing everyone improved health...bc and le hugs jinky
age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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Dec 4, 2007 12:53PM Barbeqrn wrote:

Hi ladies,

When do the hot flashes start from the Tam?  I had a few after the 2nd round of chemo and since then, no period and no real flashes...

I had my last chemo on Oct 17th and noticed a delay in the eyelash/brow loss, so I am encouraged they will come back although it is hard to actually believe they will...I wish they made something to take that would put hair on your head as fast as chemo took it off...sigh......

I am on a major diet to lose the 10 lbs I put on during chemo...kinda hard during the holiday season, but if I want to fit in my skinny clothes, I better get started!!!!!

Barb

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Dec 4, 2007 02:31PM Harley44 wrote:

Barb,

I have had a few hot flashes so far, but I haven't been sure if they were hot flashes or just because it was warm here.  Now that it has gotten colder, I guess I will find out for sure. 

I also gained about 10 or 12 lbs with chemo, but I lost 10 lbs from all the worrying and not eating, while I was being dx'd. 

Good Luck to all of us!

Harley

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Dec 4, 2007 02:54PM my3girls wrote:

Barb...the lashes do come back!! I was worried too!  But mine are almost 100% back!  It took awhile.  My last chemo was 8/29/07...lashes started coming back by the end of October.

The weight is an issue. I am back to running 4 mornings a week (3miles) and eating a low calorie, low carb diet..and still hardly losing at all!! Very depressing.  I gained also, when on chemo.  I think being on tamox has hindered my loss.  I will keep trying.  I too also have very achy joints..esp. my knees!

Harley...I had my dx in March 07 too!

xoxox

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 4, 2007 03:42PM - edited Dec 4, 2007 03:45PM by karol61

Yes,Harley, we were both diagnosed in March....

I too, will take Tamoxifen  to stop BC.  It does stinkFrown

Dx 3/22/2007, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+, HER2+

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