Topic: Bottle 'o Tamoxifen

my girls---I have a lot of achiness/stiffness too--particularly my left hip recently--my oncologist doesn't feel it is tamoxifen related, but my gyn and pcp feels it is.  With me, I think it is a combination of no estrogen from lack of ovaries (estrogen lubricates your joints), tamox, and just getting older/menopausal (50).

Anne 

Harley--I have one more year to go on the tamox.   My oncologist originally said maybe arimidex afterwards, but now he's not sure he will be putting me on anything.  I have LCIS and the AIs haven't been studied much with that yet enough to give definitive results. He says we will keep revisiting that subject over time.  At one point he said no to Evista as well, but my pcp thinks it's likely he may put me on that because of all the new studies coming out.  I don't really like the idea of taking another medication for another 5 years, but I don't like the idea of taking nothing preventatively either.  A least I would get some protection from osteoporosis from Evista.

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

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

Good Afternoon, Tamoxi-friends!

Well, I start it tomorrow ... was going to make a big ceremony of it but I'll be traveling to Ohio to see my mom and I haven't told her ... so ... one quick gulp in my hotel room along with the fistful of my regular meds and off I go.  I just talked with my cardiologist's office about tamoxifen and coumadin -- I take coumadin for atrial fibrillation and must take both.  There's a strong warning in the tamox literature about taking it with coumadin (intensifies the  effects of coumadin), but everyone's cool with it as long as I get my blood tests regularly, and of course I'm going to do that until I get stabilized.  No promises AFTER I get stabilized, though!

Weight loss sounds really good to me ... I'd be glad to send some of my extra poundage to anyone who wants it!  

Cynthia, how are you sleeping?  How are you feeling?  I wish you could send your hamsters to play with my hamsters so you could get some sleep!  I sure hope you're doing better ... I DO understand that desperate, tired feeling you get when you can't sleep.  Once after a heartbreak, I put 2,000 miles on my car in 2 months because I couldn't sleep on the weekends.  I'd get up at 5am and drive out to Skyline Drive in Shenandoah National Park and do a huge round trip down Skyline drive.  2,000 miles in 2 months might not seem like a lot to some folks -- but I didn't drive to work, I only drove on the weekends!  I do sympathize with the sleepless!

Be well, tamoxi-friends ... and welcome to the tamoxi-train, newcomers and experienced tamoxi-takers alike!  This is a first-class train, gentlewomen, with comfy seats, NO-calorie eats (or multi-calorie eats for those who need to gain some weight), comfy sleeping cars, and the warmest, most accepting and supportive community of women you could ever hope to find!  I'm sure glad I'm here with you!

Hugs & smoochy kisses!

Layne

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 

I've been on Tamoxifen for 3 months.  Other than severe leg cramps the first month and continuing joint pain in my knees and hip, I haven't really had any hot flashes.  I have started experiencing abominal discomfort.  A CT and TV U/S showed significant thickening of the endometrium, 1.6cm and several large ovarian cysts.  I had a biopsy today and have to wait a week for the results.  I have a sonohysterogram scheduled in two weeks.  I am perimenipausal and tamoxifen is my only treatment option right now so I'm nervous about the abdominal stuff.

I have lost some weight BUT have had to more than double my 30 min. workout times to 60 - 80 minutes and exercise went from 3-4 days a week to 6 days a week on 1300-1400 calories daily.  The weight is coming off VERY slowly.  In 3 1/2 months, I have lost 15 lbs. The doctor wants me to lose 30 more lbs so this is a somewhat discouraging pace.  I don't know if it's the Tamoxifen but something is slowing my metabolism way down.  All this weight came on in the year prior to my diagnosis. 

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. 

Cynthia 

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

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

Basha

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 http://community.breastcancer.org/topic/62/conversation/683827

I'd recommend cheating. (naughty me.)

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)

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

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

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