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Topic: Stage IV Sisters taking Tamoxifen

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Jun 22, 2011 08:57AM, edited Jun 22, 2011 08:57AM by TheDivineMrsM

TheDivineMrsM wrote:

After neo-adjuvant chemo, I will soon be having a lumpectomy probably followed by radiation.  

My onc will also be starting me on Tamoxifen at some point.

Would any of you stage iv women please share your experiences with this medication? ( I know there are other threads dedicated to its effects that go on for pages).  Many women say they had to stop taking it due to SEs.  I guess I'd like to know how stage iv women approach this.  I want to do everything possible to control my disease and stopping Tamoxifen doesn't sound like it would be an option for me.  But the SEs sound challenging. 

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~ radiation~arimidex~~Enjoy life more because of the uncertainty not less.
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Posts 1 - 21 (21 total)

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Jun 22, 2011 09:13AM chrissyb wrote:

TDMrsM, please don't be put off by what you read regarding Tamoxifen and the SE's as everyone is different and everyone reacts in different ways.  I for one am allergic to it but I know girls who have done their five years on it and other than the flushes and a few aches and pains to begin with (in the first 6 months) they had a dream run on it and were really cut up when they had finished their time.  If for some reason you needed to stop taking it, there is a whole heap of other meds available to us stage IV girls.

Love n hugs.  Chrissy

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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Jun 22, 2011 09:46AM , edited Jun 22, 2011 09:47AM by rkt

I am three years into this journey - arimidex for 17 months, aromasin for 9 months, and in August, will have been on tamoxifen for 1 year.  Side effects for all of them have been similar.  My joints hurt worse on arimidex and aromasin (glucosamine condrotin helped).  I seem to have more hot flashes (maybe 1 or 2 a day) on tamoxifen than I had on the other medicines.  The one thing that really through me for a loop was about 10 days into taking tamoxifen.  I hurt everywhere - had trouble walking and moving in general, couldn't get out of chair without help, couldn't get off couch or bed at all by myself, told my husband he better go buy me a walker or I wasn't going to be able to walk to class on Monday to teach - seriously thought about getting a handicapped parking sticker.  That lasted about 4 days.  Two days later, I got to the end of the day and realized I didn't hurt anymore - started back walking a mile, could do Richard Simmons DVDs - I hadn't been able to do either the entire time I was on aromasin. 

My doctor told me at next visit that what I had probably experienced was tumor flare.  And may scans showed improvement also.  At last visit, bones were stable.  I do make sure to go to the gynocologist for my regular yearly exam, and she knows I am on tamoxifen so she knows what to look for with respect to those issues - no problems there so far.

Tamoxifen hasn't been too bad - I am hoping to stay on it for a long time.

Becky

Becky, Stage IV, bone mets, ER+/PR+, HER2-, diagnosed June 2008, right mastectomy May 2009, 0/13 nodes, pleural effusion May 2011, mets to liver October 2011
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Jun 22, 2011 10:32AM EnglishMajor wrote:

I have taken it 1.5 years. (I was 45 when dx'd)  Can't say I had any bothersome side effects. I feared that rocketing into menopause would bring a fallout of hot flashes but that didn't happen. (Many women do have hot flashes, I will count myself lucky that I do not.)

I  did have one charley horse (woke me up) right after starting but really, just that one time. I had some initial occasional joint discomfort (stiff fingers in the am kind of thing) but that didn't last. It was mildly annoying but nothing that required taking something. 

I think I can blame some weight gain on tamoxifen (but what menopausal woman doesn't also face this issue?) 

I would read the Tamoxifen thread with a grain of salt (even tho that could be cankle causing). We are all individuals and what is true for one person doesn't necessarily follow for another. But some of the issues people reported are not associated with Tamoxifen. I believe--as anyone would be when starting a new drug--some people are hypervigilant and because they are extra aware they perceive things that either may have always been an issue or are caused by something else. 

 Anyhow, when I started taking Tamoxifen I was on pins and needles. But so far so good. . .

Becky, was wondering how you are doing, nice to see you posting!

Dx 7/6/2009, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jun 22, 2011 10:47AM china wrote:

Thanks, this is a good thread since us Stage IVer's have different issues. I had gone to the other threads but most of the women were early stage breast cancer and it was used for preventive measures.(5 yr tmt) I just started on tamoxifen almost 3 weeks ago and at first I had some joint and bone and muscle pain, my only issue is some nausea and lower back pain/stiffness and R rib/ R hip pain like I had with Femara but not as bad. I do have some mild fatigue later in the day but don't know if it is from the recent chemo train, ended chemo May 31st 2011.  I am willing to do the drug, just need monitoring and knowing that I am recently stable gives me hope that this drug will work and I can handle the SE.s After being on weekly chemo for over a year, this is doable, chemo was tough. Dawn Smile
Dx 4/6/2007, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jun 22, 2011 11:26AM Chickadee wrote:

My happy post is elsewhere but after being on Tamox for 2 months it stopped my progression and there is some healing.

I also read the Tamox threads on the other sections but found little relatable information there to Stage IV.  That was frustrating.  I will say that my first 10 days or so were hell on wheels with joint pain and muscle spasms.  I couldn't drive the car for a couple days because of a spasm like pain in my right calf.  At about 10 days I noticed a lessening of symptoms and over the next 10 they disappeared completely.  At this point I have no bothersome symptoms at all and, best of all,  it's working.

My MDA onc thinks that I should expect to get about the same amount of time stable on the Tamox as I did the Aromasin(about 18 months) so I'm hoping that works out.  I know that some ladies on here have gotten much more time stable and I can wish for that too.

It is somewhat reassuring to know that if one med doesn't work for us, there are many others that might.

At least my hairy arms are much less hairy.......always was self conscious about that!  Now if I didn't have to keep shaving my legs........

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012 Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jun 22, 2011 11:39AM dreamwriter wrote:

I was on Tamoxifen for about a year and it kept me stable til then.  I moved on to Femara, another hormonal for a couple of years.

Laugh until it really IS funny. Dx 12/20/2005, 6cm+, Stage IV, Grade 3, 18/18 nodes, mets, ER+/PR+, HER2-
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Jun 22, 2011 11:59AM Groovywilma wrote:

I've been on Tamoxifen and Zometa since the end of January.  I did have a period of increased aches and pains and difficulty walking (I'm not sure how much of that was the medication versus the mets in my bones) but have been feeling so much better these days.  I'm happy to report that my June Pet scan showed that the medication is working for me!  I hope that it works for a very long time.  Luckily I have not noticed any major side effects. 

Dx 1/3/2011, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jun 22, 2011 12:49PM CoolBreeze wrote:

Tamoxifen can be challenging but after a year, I can say that it is better.  Now I'm just left with joint pain, which my doctor gives me meds for, and hot flashes, which are annoying but not that serious.

Unfortunately, I recurred while on Tamoxifen so I'm not sure I get any benefit from it.  I'm still taking it because there isn't another alternative at the moment but when all the results are in, my onc will discuss it with me.

I have heard many people who do not have the tamoxifen SEs and you might be in that camp. But, if you do get them, your doctor can help you with them.   

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV Dx 8/17/2009, IDC, 4cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Jun 22, 2011 03:20PM chana21 wrote:

I haven't "been here" since my initial dx and tx almost 6 years ago. Lung mets dx almost 8 months ago... Haven't had any "peer interaction," so it feels good to be back (so to speak!). 

It sounds like some others here are on Tamoxifen (or aromatase in.) as monotherapy. I have mets to the lungs, and began taking Tamoxifen again when mets was dx 8 mos ago. I had previously taken Tamoxifen for almost 2 yrs after initial tx, but discontinued d/t major side effects, including early uterine cancer (treated successfully w/surgery only).

My oncologist intended to start me on an aromatase inhibiter, but we didn't start as I was seriously ill (autoimmune disease++), and there was no sign of cancer.(Better on that front at the moment, btw!)  So... I ended up with no preventative tx for about a year before lung mets was discovered.

I stayed stable on the Tamoxifen for 4 mos and then at 6 mos had slight improvement.. I am due for another CT soon. I have 2 MD friends who keep pushing me to ask about more agressive treatment (we may be starting Herceptin again anyway...). I'd love to know if anyone else is on hormonal therapy alone (or HT+Herceptin!). Many thanks! 

Dx 7/2006, IDC, 4cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2+ Dx 10/2010, Stage IV
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Jun 22, 2011 08:03PM Lena wrote:

I loved Tamoxifen. It kept my cancer stable and I didn't have any perceptible side effects for the 5 months I took it -- I did have hot flashes but I had started them on chemo, and had gone on Tamoxifen immediately after chemo, so I didn't really blame them on the Tamoxifen too much, and the Tamoxifen hot flashes weren't as bad as either the chemo or AI ones. Unfortunately, the Tamoxifen didn't like me all too much -- it gave me a deep vein thrombosis, so I had to go off it (and I'm still on Coumadin!)....

Why buy shampoo when you can get real poo for free? Dx 2/9/2009, IBC, 6cm+, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jun 22, 2011 09:39PM chana21 wrote:

Thanks for responding, Lena! So sorry you're still dealing with the effects of the DVT. Have your INRs been good? How much longer do you have to take it? It sounds like the Tamoxifen kept your cancer stable for 5 months, but are you taking an aromatase inhibitor now (and/or other tx)? I'm wondering if you and/or others are staying stable (or improving) on hormone therapy alone (or with hormone therapy+Herceptin)?

Dx 7/2006, IDC, 4cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2+ Dx 10/2010, Stage IV
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Jun 22, 2011 09:45PM CoolBreeze wrote:

I take it back.  I"m off of it as of today due to progression.  I hope I stop waking in a pool of sweat.  And, I hope my cancer doesn't grow even faster. :(

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV Dx 8/17/2009, IDC, 4cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Jun 22, 2011 09:46PM , edited Jun 22, 2011 10:02PM by thats-life-

hi tdmm, i remember how hesitant i was to take the first tablet. i would put it up to my mouth for a few days then put it back in the bottle. on the fourth day i said "goodbye youth! what will be will be!" out loud, and swallowed it. that night i didnt sleep much, i felt my body temperature change, had strange sensations, and the next morning woke to my new 'norm'. that evening i had my first hot flush. i decided to take the tablet at 9pm each night. i didnt have trouble sleeping, apart from waking occasionally with sweats or a flush. for a number of months i had about 6 hot flushes a day, some were full on, but they have eased off now to only occasional. i had joint pain, and bone pain, and still do, but nothing a couple of panadol wouldnt help. the bone pain was considered tumour flare. scans showed stable bone mets, and clear organs, so 9 months and counting. i dont like to jinx myself, but i cant feel the 2 tumours in my breast anymore...so i might use that as a personal gauge..my concern re uterine cancer was eased by oncs explaining that it is a very slow growing cancer, and treatable, i decided that the risk was worth it. i stay alert for dvt, clotting issues are in my family. i am so grateful for this relatively mild treatment, and hope to be on it for years..fingers crossed. these days i mainly have the little 'temple surges' as i call them, irritability, tiredness, aches and pains. I havent menstruated since the first tablet. the onc looked up in surprise the other week when i told her that (they hadnt asked)..i dont know why she looked so surprised?...wishing you success xx

It is the opportunity to build what one loves into something permanent that makes this very difficult game worthwhile. mets skull, rib, hip, spine. Dx 8/2010, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-
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Jun 22, 2011 09:57PM Lena wrote:

To answer your questions, Chana,

My last INR (a week ago) was 2.0, which is OK (I get the next one taken a week from today), but my range has been 1.8 at the lowest to 2.9 at the highest. I've been on the Coumadin since April or May 2010, and don't know how much longer it'll be yet.  I'll actually be seeing a hematologist in August.

I did AIs (all of them; first Femara, then Aromasin, then Arimidex) and they were HORRIFIC in terms of SEs. They were ALL so bad I was actually glad when I had progression because it meant my onc would take me off it after 16 months of total hell. Been off for 2 months and over the past six weeks have actually felt GOOD for the first time in over 2 years, and I just had a BMX a month ago too. Rads are next. :::::sigh:::::

Why buy shampoo when you can get real poo for free? Dx 2/9/2009, IBC, 6cm+, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jun 22, 2011 10:42PM chana21 wrote:

Sorry you've had so much trouble with the AIs as well. It sounds like you're feeling better (finally!). Best of luck with radiation, Lena,

Dx 7/2006, IDC, 4cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2+ Dx 10/2010, Stage IV
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Jun 22, 2011 10:50PM JeninMichigan wrote:

I have been taking Tamoxifen since January 2009 and have had minimal problems.   My joints have taken a hit for sure but really hard to say its not the Herceptin or Aredia causing that either.   I get alot of charlie horses in my calves especially at night if I stretch ...and they are fierce.    Hot flashes but they don't come all the way out where I am actually sweating.   A little moody but not bad.  I had my ovaries out in December 2010.    I did get a blood test to see how I metabolize it and I am a very good metabolizer of it so my onc said I get to stay on it for another few years.    Wishing you good luck!!

Jennifer

Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
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Jun 23, 2011 04:19PM TheDivineMrsM wrote:

Thanks, Jen and to all others replying to the post.  It does seem to me that stage iv women look at this treatment somewhat differently than those at other stages.

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~ radiation~arimidex~~Enjoy life more because of the uncertainty not less.
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Jun 23, 2011 04:57PM china wrote:

Hi Ladies, Today I woke and my muscles and spine and hip joints really ache and are stiff, I had to take something for the pain for the first time in a while, it dulled it. I just am completing week 3 of Tamoxifen, are this some of the SE's of the drug? I have been only stable for a month now and just finished chemo May 30th.  I can't tell the difference of tmt pain or if I should be worried the drug is working or not (progression). I hate to whine to the onc office if it is something r/t tmt and I don't know how long chemo keeps you stable. Thanks Dawn

Dx 4/6/2007, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jun 23, 2011 05:57PM mari55 wrote:

I was put on tamoxifen in October, 2010, when femera failed to stop prgression.  Other than hot flashes I haven't found it to be that bad. My last two scans have shown that my bone mets are stable.  I had much more bone pain with femera.  Next month is lab and scans so will see if it holding.

DCIS 1999, R mastectomy. Mets to spine, sternum,ribs,and femurs Jan. 2010 and new primary on left, DCIS, Dec. 2009. I am not afraid of dying, I am afraid of not living Dx 1/11/2010, Stage IV, mets, ER+/PR-, HER2-
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Jun 23, 2011 06:43PM Chickadee wrote:

china, they could be.  My first three weeks involved a lot of muscle, joint pain that began to ease in the third week.  However, I didn't do chemo so I don't know how that difference might affect when SE's from Tamox might kick in.  I moved from an AI to Tamox.

Hopefully it will ease

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012 Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jun 24, 2011 10:54AM shelly56 wrote:

I have been on tamox for almost 2 yrs and the only real symptoms include more intense hot flushes and cramps in feet and calves almost daily.  Those are NOT fun as the cramps can last 15 or 20 minutes.  My onc will recommend putting me on AI's like Arimidex in the next few months but I have read nothing good about those.  Is there any of you that can share your SE's from Arimidex? 

"Courage is resistance to fear, mastery of fear - not absence of fear." Dx 1/26/2009, IDC, 5cm, Stage IIIA, 4/15 nodes, ER+/PR+, HER2-