Bringing in 2014 with Tamoxifen!

Kruise you mention iodine drops. I'm not taking any.  What's it for? My biggest complaint is thoracic back pain which really feels mostly like muscle spasms.  Had a break from it yesterday.  Got lots of rest recovering from surgery.

I get mood swings as well, and snappy. Then so sad. And I feel almost guilty when my mind moves away from the cancer for too long.  Like I should never forget.  I won't.  I know I'm blessed to be here.

Thanks for all the awesome smoothie ideas!

I started Tamoxifen mid-November after a bilateral mastectomy. When the oncoType DX came back negative, my oncologist reminded me it was time. I picked up the RX. I read through all the literature. I then did not take the pill. I needed another night to sleep on it. I realized I had NEVER started anything in my life that from the start required a commitment for at least five years. Certainly never a medication.  I was surprised, at first, about my reaction. But realized it was okay to take a day and let all those words settle before I started the pills. And as I sat with it I thought about relationships that have lasted at least five years--my job, my partner, my undergraduate degree....The first couple of weeks were rough only because my body's reaction was to then have a two week menstrual flow. I have never bled for two weeks before. Then the bleeding ceased and has yet to recur.  My biggest challenge since then is to remember to take the pill twice a day. I have messed up timing a couple of times and missed a dose completely just once. I try to take it at 8 a.m. (at work) and 8 p.m. (at home.)  My acupuncturist who was treated for DCIS refused the initial recommendation for Tamoxifen and eventually got medical support for her reluctance. 

Thank you for starting this topic...it is good to know others are out there.

Ponyo

I'm not an expert Bud. I am similar to you in that I had a MX and no nodes were involved. In my case, I did have a high oncotype test, so went ahead with chemo and am now on the tamoxifen. It is the right plan for me, I want to throw everything I can at this horrible disease.

Having said that, in your situation I would definitely question taking the Tamo now. Is there any chance that you could go through a pregnancy and then afterwards take the tamoxifen. My take on it is that you are young, may have a child, and you should do everything that you can to prevent a recurrence. Tamoxifen is a fantastic drug, despite its SEs. We are fortunate to have it in Our arsenal.

Hi everyone,

Kruise; Thanks for starting this thread..

Bud; there is a thread about getting pregnant after treatment. I think it goes into the question of tamox and this issue. Might be called, Ladies in your thirties wanting to have a baby..Or something along those lines.. Good luck.. As with so much to do with this disease it seems there is no 'right' or 'wrong' decision. Just the right one for you.. From what I have read, getting pregnant is ok after treatment, and could be a good thing.. Being past all that, but still well able to remember the yearning, I wish you well..

Glad to hear Michelle that tamox is treating you ok..And that you feel better on it than the other drugs..

I have been taking it- the tamox since mid August. Have been in menopause since chemo. Right after I started taking it; or maybe I had a virus from weakened immune system post chemo; anyway, had a sinus infection with a sore throat for six weeks or so. Was really unwell..Had a few courses of antibiotics etc...Finally got over that, summer here in Aus so that could've helped.. However, I find that I now have ongoing sinus problems and a persistent slightly sore throat. Not every day, maybe every few days. Feels like I am on the verge of getting something.. Wondering if this is tamox.... Also....Seem to be more susceptible to feeling the cold now.. Anyone else notice this? 

Only other concern is that I have been having pelvic pain, however, this could be irritable bowel symptoms. Had IBS years ago, which now seems to/could have flared up following treatment... Am going to have a pelvic scan in February after my kids go back to school as I know, with tamox there is an increased chance of uterine problems.

Hot flushes; tick., night sweats; tick..

Weight gain or loss.. Neither.. 

Sorry to go on, have now been taking the tamox for six months, so am interested in hearing all your stories..Can't complain to my kids or friends, of course, am grateful for the medical treatment and for being here. But would be keen to hear if anyone else feels these physical effects..

Thanks for being there everyone..

Ingrid

Hi Kruise we were on the fall radiation group together If im not mistaken.  Day 10 on Tamox and my periods were delayed by a week and I feel all different.  Ive put on weight and cant seem to loose and d worst part is insomnia.  No matter how tired I am and sleepy too I get up 2 to 3 times sometimes with due to hot flashes and sometimes just because of a nightmare?  And the fatigue as well.  Atleast while I was on radiation I could still go to the gym.  Now Im jist always tired.  Anxiety!  Is anyone suffering with that se?  I feel like Im 60 instead of 42😭😭😭.  Have any of you had to do your mamo ultrasound 6 months after your surgery?  My Oncologist has asked me to do it but my breast is still so tender and I get the sharp shooting pains too at times.  Wonder how Ill get thru them squeezing the life out of my breast during d mamo.

So I went to my MO on Monday, which is 3 men.  They're great, they've been wonderful thru this entire deal. But ... They're men so .... not too sympathetic in the "hot flash" department.  Anyway they've decided the back pain has gone on long enough.  We've scheduled a bone scan.  My surgeon had felt that would be overkill since my cancer was small with no lymph involvement.  But my onco score was 34.  That's pretty high.  My MO isn't very worried but wants us both to have peace of mind.  It still makes me nervous.  Every test makes me nervous. But - today was a good day. Minimal pain and my son's high school team won their hockey game ( and my son scored!).

Hello everyone. Started tamoxifen on Dec. 28 and have mild hot flashes easily solved by dressing in layers. Also now my hair is grown in but very short that keeps me cool. I avoid my wig unless I absolutely need it. 

I don't seem to have any issues yet and as I'm starting to exercise, my back pain is lessening.

my oncotype score is 19 and still trying to decide on chemo as well....going for second opinion on Friday...and still have to go through radiation and then five years of tamoxifen....

I don't start my tamoxifen until February - I get a month off between last chemo treatment and start of tamoxifen, but wanted to join you ladies to hear about your experiences. I have had horrible hot flashes throughout chemo and looking forward to them calming down, but maybe not while I am on tamoxifen. We'll see!

It does say in everything that I have been reading that one of the side effects of tamoxifen is a decrease in a woman's sex drive.  I think this whole breast cancer thing is a sex turn off.  Since my diagnosis, sex has been the furthest thing from my mind.  Hoping that changes.  It is a while for me before I start any medications since I am still trying to decide on chemo and then still need radiation.  I just want to get back to a normal life.  I am not looking forward to hot flashes again...been through that with menopause years ago.  Good luck to you. 

Hello ladies. Thought I would join the club as I as well just started taking tamoxifen this past monday. Was not thrilled to it, but seems it is the right thing to do. From the initial path report after BMX, it looked that chemo was unavoidable - as my Ki-67 of both tumors looked intermediate risk - but my Oncotype scores came back unexpectedly low scores - 10 and 9, thus I am off the hook from chemo and so happy  So even though I am worried about the possible SE, I can handle that. So far, TE has been the hardest part. My PS told me that I have the strongest and thickest pec muscles she's ever seen (dahh, I worked on it so that I can make my small boobs bigger) and that strong thick pec muscles have been screaming!! But this pain is calming down as I have done my last injection a week ago. So far, I don't feel any SE except yesterday I felt crappy... but it is maybe from something else. Today I worked out for the first time since my BMX at the end of Nov. 20 min. of elliptical.. feeling tired now but also feeling good!! Trying to stay active, keeping my healthy weight, as it may get tougher after I remove my ovaries (yes, need to do that as I am BRCA2+) and switch to Aromatase Inhibitor. How long does it take for the SE to start kicking in?

I started Tamoxifen 6 days ago.  The way my MO explained it was that if I didn't take the Tamoxifen that in my case there would be about a 5-6 % chance of recurrence and that if I do take the Tamoxifen that there is a 2-3% chance of recurrence.  So, at this point, she wanted me to try it for a few months until I see her in April.  So far, I  have had some nausea and bone pain and I feel very fatigued all the time.  Don't know if it is radiation catching up with me or what.   Just don't really like feeling this way and I hope it improves.  I can't imagine feeling like this X 5 years.  I am exercising about 20-30 minutes every day and in the process of modifying my diet.

Saw this today, interesting!

http://health.yahoo.net/experts/breastcancer/pros-...