Bringing in 2014 with Tamoxifen!

Tarheelmichelle- I love your statement Every day is a win  

Happy Monday and today we are all winners !!!

Hi ! I am new here.  I was dx w bc in Aug. 1.7cm Stage 1 grade 2 - onco score 18, mammoprint score low- I had Lump and SNB on Oct 3, 2013. No chemo, then Rads for 30 treatments, last one was Dec 24, 2013 (Merry Christmas). I was given Tamox early Jan. but I did not try it until early Feb. I was and still am unsure about taking it. I took it for 2 days early on and I began again today. I am sooo sensitive to meds that I took 1/4 of the pill.  I feel like I need to at least try it. I am working with a Naturopathic doc too. I just turned 50 and have an autoimmune disease, and a weird thing with my throat (could be reflux and allergies?) anyway she is helping me balance my body again. She was wishy washy about me using tamox. So I realize it has to be my choice and if I dont at least try it then I cant really make a sure decision...to many icky choices w cancer.

I have been looking into DIM and other things. I already eat well (though this past weekend I didn't!). I try not to eat gluten bc of the auto-immune disease (I was getting tachycardia). I have had an anxiety disorder since I was 14 so i am used to dealing with anxiety but I hope the tamox doesn't increase it. I work out have been maintaining my weight pretty well since dx. I lost a few pounds initially bc of the grief I felt at the diagnosis. (No appetite). 

I had to come off long term birth control that I used for hormone replacement really- I was infertile when I was in my 30s and my kids are adopted. But I had horrible PMS and began using the nuvaring on a constant basis. meaning I never had a period just changed it every 21-24 days. That went on for 7 yrs. My ND said that may be what caused the cancer.  But I am not sure..funny that 20 years ago I had to have a surgeon watch that breast (and in the same area where i got cancer) - he decided it was ok back then - so I began regular mammos at age 30! Never had anything turn up til now! I stopped using this nuvaring and allowed my body to adjust for a month now and no period and mild PMS. I will have my hormone levels checked in early April by my ND.  I hope I am done with the bad periods I had. 

It has been a tough year (as it has for most of you). I also had to have cataracts removed (i had weird fast growing cataracts) , then I had BC surgery (3 surgeries in 4 weeks!), 30 rad treatments, I also lost 4 dogs (we had 6) in the last year - I live on a farm and have many critters. I lost a good friend to colon cancer last June..so 2013 basically sucked! I just lost my heart dog last Thursday. It has piled on. Anyway through it all I have had many days of joy.  I cannot wait for spring bc the weather here in MD has been icky!! 

So today I took a small dose of tamox and will do so for a week. I am tired today but I did take 1/4 anti-histamine (and all of those make me tired). I have to take all meds in smaller doses bc I am so sensitive.   So I will do 1/4 tab for 4-5 days up it to 10 mg. then if i can to 20mg. I have to see MO in the next few weeks so I want to at least let her know I am trying this. 

I was reading through the posts and see most of you began a few weeks or more on Tamox So i look forward to hearing how we are all doing. This has been such a hard part of this journey - why? Maybe bc we have to take it for so long (or bc I hate drugs in general?)  So this is the first time that I have written on the boards here instead of lurking.. thanks for reading all this:)

Anne

Sweeney, what an awful year you had.  I hope this year will be better! 

You mentioned that you are taking an anti-histamine.  I don't know if you're aware but tamoxifen interacts with a few meds.  If you go to www.drugs.com you can search this : http://www.drugs.com/drug-interactions/tamoxifen.html 

Good luck!

Hobbes-

From what I have read I think this is pretty common.  But others who have been on it longer might want to chime in. I went off long term birth control ( I used to suppress my period ) so I did not have a period for 7 yrs while on it. When i went off I did not get one either (its been 38 days since i went off birth control). So I am all messed up! I am also 50- lol! So being messed up is not uncommon. 

Hello Ladies:  So glad to see your board!  Thank you.  Thank you!  It seems I'm in good company with others who have been reluctant to start or take the tamoxafen. 

Quick history...I had just turned 40 last year and a few months later was diagnosed with BC.  No family history.  I was in great health...actually ran a marathon 5 days b4 my diagnosis.  I've always been health and wellness minded so it all came as a complete shock.  Although in my heart, I really think it's a result of years of poorly managing stress.  Thankfully I found it very early b/c I felt a lump on my chest plate and had a baseline mammogram from age 38 b/c of some dense tissue.  All in all, my doc said it was an A+ tumor...small, not in the muscle or lymph nodes yet.  However, my onca type came back in the "intermediate" range.  I had to go to 3 Onc to get a consensus on whether or not I should do chemo.  We decided on no chemo but the doc said she wants me to stay on the Tamox for at least 5 years, preferably 10 because of my age.  YIKES!  I was incredibly nervous having had a bad history with hormones in the past.  I've never been able to take birth control or anything related to hormones b/c they made me crazy...depressed for a few days then boughts of anxiety for a few more.  One extreme or the other.  I promised the doc I would "try it" for a few months.

My first month was actually GREAT!  I told my husband that maybe estrogen had been my problem all along b/c when it was blocked I was feeling like I could do anything!   Unfortunately, that was short lived.  Second month (I'm finishing up with it)....not so good.   I've been back to those dark days of depression, feeling anxious and/or paranoid, short with my kids, jittery and scattered.  I've been on an anti-depressant for several years to help with a history of mild depression and anxiety but it seems to not be standing the test of our new friend, Tammy .  That's been the hardest side effect.

I've also started getting joint pains.  I experienced this several years ago when I had autoimmune issues.  I took gluten out of my diet and monitored sugar etc. and it helped dramatically.  However, that doesn't even seem to be helping.  I am trying to mentally get my head around sticking with an anti-inflammatory and low estrogen diet.  However, I think I'm sort of "at war" with myself right now...kind of rebellious b/c I'm over it .

All of that is to say one thing occurred to me that I hope may be related....My first month I was taking TEVA generic Tammy.  Second month they said it was a different brand (I need to dbl chk the name again.)  It occurred to me that perhaps the different generics are causing the issues.  Has anyone else seen a link b/t different generics?  

Glad to find others who are on this journey.  The blessing of cancer has been all of the amazing women I've met!   It's so hard to explain this to my hubby and he of course wants me to stick it out as long as possible with the meds despite the side effects.  I have an Onc appointment on Friday so will see what she says.  

Wishing you all a relaxed and peaceful evening!

Runhappy -

I'm sorry to read that you are having side effects. I just started my Tami last week and don't notice anything yet except maybe some fatigue.  

I did see on the Bottle O' Tamoxifen thread that several people have mentioned differences in the various generic versions of the pill.  Look back a few pages of that thread if you're interested.  I have the Watson brand.  Apparently, several members swear by Teva but it seems to be in short supply. There was also a Mylan version which was produced but I think they have discontinued it.  In addition, pharmacies have contracts with the generic companies so CVS, for instance, only has the Watson brand.  If you look online, you can find the ingredients for the original Tamox (Nolvadex) and the generics. There does seem to be some differences in the ingredients.

Here is one thread on the topic:  http://community.breastcancer.org/forum/78/topic/...

I, like you, am tentatively trying this drug.  My ONC said that most side effects settle down in a couple of months.  Can your anti depressant be increased or changed to compensate?  You are certainly dealing with a difficult side effect and it must be hard.  I hope you find relief.  I would call around to local pharmacies and see what brand of Tami that they have.  

Hang in there and thank you for posting.

Dawn

I have no side effects and I'm on the Teva brand.

Laurie

DawnCT - Thank you for the info and link!  I'm going to do a little research.  My brand this past month was Actavis.  My pharmacist said they usually have Teva but last month their supplier brought them a different one.  I actually picked up my Teva generic today from RiteAid so I am going to be mindful of how I'm feeling and keep a chart to see if there are any patterns.  I am also giving myself grace and remembering that this is a process.  (Remind me of that next time I post that I'm having a really down day .)   One day at a time.    

Today...I feel energetic and upbeat again...focused, motivated and rational.     (Lots of smileys!)  So I'm hopeful that this is part of the adjustment period and perhaps with some tweaking of my brand, I can have more of these days than not.   I'm also learning how to capitalize on the energetic days and find some "tools" like journaling and running again once I'm allowed to get me through the gloomy days.  I do think that listening to our bodies is such an important part of this journey.   

I'm on such a low dose AD right now and am trying to increase that as a last resort only b/c it tends to make me "numb" emotionally and I don't want that extreme either.  Oh...the joys of being a woman with hormones .  Thanks again for your help!!

Desalonde - My MO said to start right after rads.  But I waited a month as I started a new job (he knew and was ok with it).  I am at pill no 6 tonight (Teva) and so far so good.  I feel a little "off" at times - just a weird numb feeling like a fog but I am super tired this week so not sure its the Tamox or just my sleepy head .

I also have kind of the same worries.  I'm 46, premenopausal, and really haven't had many side effects.  I've heard about some studies that have shown that perhaps Tamoxifen isn't as effective in women who aren't having many side effects.  Don't know what the facts are.  My tumors were 95% Er/Pr positive, so a little concerned.

laurie, Monis, lojo:  my MO's plan for me. I've been on tam for 1 1/2 months with no side effects. She had planned on me taking it for five years but says if I have no problems with it, she will keep me on for 10, even after menopause. She said she likes tamoxifen better than AIs, less side effects and good for my heart, bones and cholesterol. I'm 48. I think I just missed my first period since taking tam. I have the period symptoms without the bleeding, which MO told me may happen. Can't say I'm disappointed about that. . Kim

Levassel and Monis -  I have seen posters here mention that they took some type of test that tells how they metabolize Tamoxifen.  Perhaps that is how drs know whether the Tamox is working?  I would ask your MOs whether it is true that you need for Tamoxifen to have side effects to be working.  I suspect that it may just be hearsay.  

Lojo - My doc told me that Tamox tends to make periods irregular.  I started taking it 12 days ago and I have not gotten my period which I was expecting.  

Stenokim - thanks for the info.  It helps to hear what's going on with everyone. 

Corky - I hope your neuropathy settles down. Yes, we all have had to make hard decisions.  I hope you won't have to choose.

Took pill #12 day.  I spent the day in NYC with my daughter yesterday and am just exhausted today. I'm not sure if it is leftover radiation recovery or the Tamox wearing me out.  I guess time will tell.

Dawn

I guess I will chime in here. I too have been having irregular periods since starting tamoxifen a couple months ago. Usually I am very regular. After I stopped birth control pills last summer due to diagnosis, I got my period every 26 or 27 days for awhile, then after that every 24 or 25 days.The first month after starting tamoxifen, my period was a bit lighter than usual. This month I thought I missed my period all together, but it just came late, and light  in flow, and weird brown in color.  (Hope that wasn't TMI).

But for me, it is a little bit of a relief, because this is the first real "side effect", (except for possible the stuffy dry nose every day), and I take it as an indication that T must be working. I was beginning to wonder...

BTW, I had my MO appt. last week and he checked out the lump I found about 5 weeks earlier. He said it is inflamed glandular tissue, probably from radiation. He said I should keep and eye on it and he will monitor it too. That is the first breast exam I have really had since finishing rads, and boy was I tender! I had been having a lot of pain and tenderness on the right side for the past couple months, and of course that lump area is very sensitive. I have my GYN visit in April, and due for my mammo end of May, so if it doesn't go away, at least I have those coming up. My MO also said I don't need to wait 3 mos. to see him again if I have any concerns in the meantime.

My MO is so nice. I was so nervous to go to the appt. I got myself all worked up worrying about it. But he really made my feel reassured about everything. I told him how I have been feeling out of sorts lately, like I am only just now starting to process what happened to me, and I am going through a lot of emotions. He said that is very common at this stage, that many people go through this after active treatment, almost like a PTSD. He can prescribe something for mood if I need it, but I told him that right now I just feel like I need to just take some time to process it all. 

I feel like I have gone through a trauma, both physically and emotionally, and am only now recognizing this. How to find the new normal? How to stop worrying about the future? Anyone else going through this?

thanks hobbesla4,

It is good to know I'm not alone in this. I think this time after active treatment is worse than during treatment. No one prepared me for this part. It is scary to lose the constant contact with doctors and go back to the real world. I'm not sure how to feel. I am sad, angry, worried, fearful, etc. Everything is different than life before BC. I am different now. Like I said, I am only now starting to process everything that I've gone through. 

Anyway, I'm sure it will get better with time, and I just have to be patient with myself, and be kind to myself. But right now I hate having to feel this way. I hope this is not tamoxifen affecting my mood.

Hopefully you will be able to address your concerns and emotions with your doctor as well.

PS: I too am working on better nutrition and exercise. I am walking 4 miles a day. It is one of the only things I can do to feel in control right now.

That is wonderful advice, Jeni.  Thank you so much. 

And I will definitely be thinking " what if the cancer doesn't come back".