Tamoxifen and weight

vlnrph

Walking is good, any kind of movement helps! If you start weight or resistance work and are at risk for lymphedema, be sure to begin slowly and increase gradually. Too much activity can trigger swelling which may never go away.

Sistercoyote2

Not looking forward to this side effect of this drug either....I am already overweight and really cannot afford to gain any more.  I am trying to diet before I go on the drug, but that is hard with going through everything else right now.  I am 62, almost 63 and my metabolism has slowed down over the last five or six years and I just can't seem to stop gaining and fearing that it will just get worse once I finish my treatments and start this drug. 

farmerlucy

I realized last week that I have probably tried to diet thousands of times. It seems I am either "in control" or "out of control". This time I set myfitnesspal to lose a lb a week, so I get to eat a fair amount of calories. The thing I really like about it is that I can see the nutrition value from various food. Wow- I had no ideal certain processed foods (like a whole wheat wrap) had so much sodium. I'm sick of being defined as a number on a scale. My goal now is to treat my body well, and not sweat the rest. Life is too short for me to be down on myself.

rozem

farmerlucy - im with you!  I cant count how many times I have been on a diet - I have always maintained my weight within 2-3 pds, if it goes over then im in diet mode.  Weight Watchers was the best way for me to lose weight, I know its calorie counting via a pts system but it worked for me.

I agree, I consider myself pretty food savvy in terms of what is healthy etc but I still get surprised at some calories/fat in certain foods.  I know processed is bad but I cant start baking my own bread!!!

peggy_j

Tinanicu, I feel your pain.  My weight crept up when I first went on tamox (maybe 8 pounds in the first six months) and all my usual little tricks of cutting back didn't work.  I ended up added in more aerobic exercise, in my case swimming (30 min, 3-4 times a week), in addition to my usual: going to the gym 3x/week and walking 30-45 min 4x/week. That got things under control for me. As it turned out, I chose to stop tamox after 2 years and...I didn't have to work so hard to keep the weight off (ok, I'll admit it, I rarely swim any more and my weight is at the pre-tamox weight).  While I was frustrated with the weight I concluded this is just another way that tamox mimics menopause. So...I started asking my friends who went through menopause if they had weight gain and how they adjusted (I even asked random women in the locker room. I just talked about "menopause" and didn't mention BC). Among the women I spoke to, it was unanimous: add in more aerobic exercise, as much as it takes (sorry!) Zumba seems to be popular, so I never tried it. Anyway, good luck. It's frustrating but you can do it!!!!

Anonymous

I didn't really gain any significant weight on tamoxifen, but I couldn't lose an ounce, even with healthy eating and a lot of exercise.  After my total hysterectomy/oopherectomy (immediate surgical menopause) is when I noticed a lot of weight gain; especially around the mid-section; despite diet and exercise. It is really frustrating.

Anne

Anonymous

I gained over 30 lbs on Tomoxifen and stopped it last year.  I now do not take anything and no matter what I do, diet, exersize, brisk walking 2 miles each day, nothing has worked to take the wieght back off.  In fact I'm still slowly gaining. I told this to the onc dietician and she told me well you have a hormonal disease when you have breast cancer.  Duh, no kidding.  I have always been thin and loved wearing clothes.  Now I dread shopping for clothes and none of my jeans fit anymore.

Oceana

CatbirdC

I have been on Tamoxifen since September of 

'09 and have gained about 18 pounds and more

tummy fat than the law allows.  I was wondering if

that might reverse after I finish my 5 years this September

but I sort of doubt it.

rozem

oceana:  I think being menopausal is the bigger culprit here - which is why the pounds didn't come off after you stopped tam. 

catbird:  mine is all belly too which I never had - again, another common weight gain spot in meno

it took me almost 3 wks on a 1200/calorie a day diet and I think im down 1.5 pounds.  Its something but wow eating that little is tough some days!

susana4865

Hi, Rozem.  You know the saying "Misery loves company?"  Well, I can't tell you how glad I am to hear I'm not the only one who has gained so much weight on Tamoxifen.  Before I was diagnosed with DCIS (Stage 0, Grade 3), I lost 40lbs in 2 months. I thought it was because I had given up coffee and started drinking Red Bull. It gave me so much energy and took my hunger away and everyone was telling me how great I looked!  Then I got my DCIS Dx in December 2011.  I did a Tamoxifen drug trial from Janaury to May which put off my radiation therapy, then had six weeks of radiation from June to the 2nd week of July.  After that, I started taking Tamoxifen and the only side effect I had at first were hot flashes. Those eventually went away but over the past two years, I gained the 40lbs back plus 20 more and I have a roll of fat around my stomach like I have NEVER SEEN.  I actually had to buy maternity pants so I had nice pants to wear to work. I was disgusted.  My medical oncologist hooked me up with a nutritionist but she didn't really impart anything on me I didn't already know.  I definitely plan to start upping my aerobics and strength training but my internal medicine doctor told me the roll around my stomach was 90% calories and 10% exercise.  UGH.  I've trying to eat health but this fat isn't moving an inch and my BMI is over 30.  I've considered stopping Tamoxifen altogether because of this weight gain but it seems if I don't take it for a few days, my period comes back with a vengeance and my bleeding will be so unbelieavably heavy that a pad and a tampon will literally last me 1hr if I'm lucky!  I'm 48y/o and don't want to be OBESE when I turn 50! 

edwards750

It really is discouraging when you eat less and exercise and still cant lose weight. My sister in law was on it...she just passed the 5 year mark...yea! and hired a personal trainer to help her lose weight...okay she can afford it. She has always had a big appetite - tall and big boned anyway so she really struggled with taking it. Don't know if she has lost any of the weight now because she just kind of picked up where she left off when she was taking it. Oncologists will give you the evil eye when you complain given the value of taking the drug but they also need to understand what our psyche is now. We don't need yet another "issue" with the whole BC sentence. I am not going to weigh every day like I used to. It really is too depressing. I am stepping up the exercise though if for no other reason than to feel better. I have 2 more years on this drug and maybe longer depending on what my Oncologist thinks. BTW she told me she had a patient who lost 40 lbs on the drug. Good for them..don't need to lose that much...maybe 8-10 lbs. I am short too - 5'-2" so 1 pound looks like 5. I don't expect my Oncologist sympathy necessarily but don't want to her to give me grief for complaining either. Diane

rozem

Susana and Edwards - yes unfortunately misery does love company!  my MO also brushes me off completely when I complain about weight but you know we all wait for those things to make us feel normal again...hair, nails and yes being at my pre-cancer weight is one of them.  Edwards like you im only 5'2" and 5lbs on me makes a huge difference.  I know this is vain but I just want to feel pretty again.  I just still feel so ugly - my eyebrows have remained sparse, the weight,  my hair texture is awful- thanks to meno its like hay no matter how much I try to use product on it.  Just reminds me every day how much my life has changed.  I know these are small problems and am completely grateful to be here and NED but I look at my friends and I am envious that they don't have these things to worry about at our age.  I should be bitchin about this stuff in my 50's not now!

marthah

Evening, sisters! I've been on tamoxifen for just a hair over 2 years, and I am now heavier than I've ever been, which is about 10-13 lbs higher than pre-DX weight. 

Misery loves company, no? Looking forward to chatting with all of you!

marthah

Susanna, I had that same problem with my period a few years before my DX. Ask about an endometrial ablation, assuming you're not wanting to get pregnant in the future. It worked WONDERS and completely improved my QOL. It is a super-easy outpatient procedure where they just go in and burn the lining of the uterus. It was really a God-send.

Tinanicu

thanks ladies for all the replies. I'm glad I'm not alone in the weight battle. I just hope I can keep it steady instead of gaining. Sometimes I wonder if my BC risk reduction from 5% to 2.5% is worth the side effects!

blanviper

I was on Tamoxifen for 18 months. I stopped taking it due to side effects other than weight gain but can tell you I went from 148 to 165. Lbs on it doing a more intensive exercise routine than my pre BC one. I always ate fairly heathy and played sports. Prior to surgery, I wanted to lose weight and had no problem - on Tamoxifen, nothing but gain. Lost 8 lbs immediately after stopping T without changing a thing. I just officially went into menopause, and I do have to work harder at it but off Tamoxifen, I do see results.

rozem

blanviper - that's interesting that even being in meno its easier (not easy but easier) to lose/maintain then when on T - apparently the new recommendations for us pre-meno women is 10 years instead of 5 so I have to deal with this and try to figure out a way of maintaining my weight (short of starvation)

momand2kids

When I started on femara almost 5 years ago, I  noticed that weight gain was listed as a side effect.  I mentioned to my gyn that I really could not afford to gain weight--I have always struggled with my weight--- and her answer was "the drug does not cause the weight gain, what you eat because the drug increases your appetite does"... now this was not a particularly helpful answer at the time, but I did notice that I was much hungrier in the first few months, so I was glad to be aware of that.... I had lost 20lbs during chemo, then gained them back.  

I have lost about 15lbs during the time I have been on femara, but it is so very hard--I agree with others, this seems to happen at the same time menopause kicks in--makes me wonder if we would be struggling even without chemo/drugs..... 

I think it is different for everyone but for me, although I am a regular exercise person, the single thing that drives the scale down for me is a strict adherence to certain foods and regular attendance at Weight Watchers-- and even with that effort, the results are sloooooowwwwwwww.....

DizzyBird

Hi ladies, I have to say this thread makes depressing reading.  I have struggled with my weight for the last 10 years - I come from good 'farm' stock!  Since my mx last June, I have gained 20 pounds.  I have tried to rationalise this because I am being pumped full of steroids and toxic chemicals and can only deal with one thing at a time.  I have two rounds of chemo left, and am due to start Arimidex soon - I can't take Tamoxifen because I developed blood clots and am taking warfarin.  I'm 44 and pre-menopausal and due to have an oophorectomy in May, after radiation treatment. I'm also on Herceptin and it's causing me no end of pain in my legs and hips, so exercising (moving in general!) is a real struggle. From what I've read here, I basically don't have a hope and will soon be looking like a beached whale!  If anyone has any practical tips, short of taking myself off into the desert with limited rations, please let me know.  I'm really worried as I could not control my weight before all my health issues and it seems it is only going to become more of a struggle.

pamela1204

Hi everyone!! I am also on Tamoxifen for the next 5 yrs. I started it in December 2013 and have started to see the scale climb!!!!!... It's so hard on the old self esteem,, I have little hair (used to be long), boobs are gone (implants became infected so I had them removed), and now I weigh as much as I did at 9 months pregnant (used to weigh 115-120) I have put on 25 pounds and I feel like I cannot move. Are there any other options out there? I cannot stand the way I look and feel.   God Bless you all!

rozem

you know I lost about 12 pounds during treatment because the chemo made me so so sick - gained it all back plus 5 for good measure!

have you guys had your thyroid checked?  those of us who had rads may have had ours affected with rads...just a thought

Tinanicu

I too am depressed about the weight gain. I don't have much to offer for advice as my exercising is doing nothing for me. All I can offer is to say that you are not alone!

pamela1204

I was diagnosed with Graves Disease in 2003, had RAI in 2005 and have taken synthroid ever since. I feel like I have no control of this weight gain,,, I will continue to take my tamoxifen even though it's making me alot larger than I ever was. Bad enough we have to go through so much with chemo/radiation/surgery, side effects from all of that and then top it off with a "muffin top" that was never there before.. I just want to see myself again.

BlessedGirl01

Edwards750!!  I love u and appreciate ur post more than u know!!  I'm not losing my mind.  I've been on Tamoxifen for about 2 1/2 yrs.  My onc wanted me to finish what I had left and then start Arimidex.  I finished tami in late Dec.  To date I haven't started A yet.  My weight gain has been such that I thot maybe when I quit tami my weight would adjust before beginning the A.  

I work out and watch what I eat and Im fatter than Ive been in years.  My husband has built me my own workout room and its amazing -- my SHE-CAVE.  BUT ... Its very distressing.   Im getting to the point I cant wear my clothes and I want to cry.  Is it selfish to want to be alive without gaining weight???  Thanks for ur post because I was beginning to think it was only me.  I feel like people look at me and dont believe Im  working out and carefully choosing my foods.  Its frustrating to try to do all the right things and stll gain weight.  Ive never had a belly but tami has helped me develop one -- my abs are like rock underneath it, but there it is !   Thanks for ur post!!

CatbirdC

Like 750 I'm 5'1"" and small boned to boot so every ounce I gain shows.  At least I know I'm not

alone being disgusted with it all.

Feel like this dog.  LOL

Bonnie

Elsiecow

I too have gained weight on Tamoxifen. I now weigh more than when I was 9months pregnant and delivered any of my children. I was off tamoxifen for 2 weeks before my mastectomies and 2 weeks after. I lost 15-20lbs. Restarted the tamoxifen and gained it all back plus more. I am supposed to have my ovaries removed but am now thinking I can't afford to gain even more weight.

It is hard to look into the mirror. I refuse to buy any more clothes in a bigger size.

Tinanicu

Bonnie...me too! Grrrrr! Lol

Elsiecow....your screen name is how I feel! Lol. I, too, need my ovaries out soon. This sucks. I don't want to buy bigger clothes either. 

Has anyone had success with my fitness pal? Should I decrease the calorie goals?

farmerlucy

I have been doing My Fitness Pal for 25 days now. I am down about 6 lbs. I have a ways to go, but for the first time in a long time I am not either ON a diet or OUT of control. I set the profile to lose about  1 lb a week. the only thing I hold myself accountable to is recording everything, even when I don't do so well. The graphing tool is cool because you can easily see the correlation between your calorie intake, exercise and progress. DH started using it this week, and we are "friends" so I see his highlights and he sees mine. I really like it AND it is free. Plus I don't have the angst of weekly weigh-ins, or the embarrassment when I don't do so well.

Tinanicu

I've tried 2 lbs per week without success. Maybe I'll go to 1 and see what happens.  

rozem

I've put in my stats on myfitnesspal and it gives me not even a pound a week on 1200/cal day.  I did it for 2 wks faithfully (incl 3-4 workouts) and I lost 1 miserable pound!