Weight Gain, No loss - Due to Tamoxifen?

[jra40]

I am done with treatment and am in my second year of Tamoxifen. I remember my doctor told me at the beginning of my journey that I would gain 15 to 20lbs. I did well until the last three months of treatment when the scale steadily started to climb. I was hoping that once done with Herceptin that I would lose the weight but it hasn't happened.

I exercise 4 days a week and have been doing a shake diet for over a month now and not one pound down!

Has anyone lost weight while on Tamoxifen?? If so, please tell me your secret!!!

Jessica

[roz123]

jessica would love to hear the responses on this aswell. I gained back all the weight i lost on chemo plus and extra 5 lbs (which does not seam like a lot but i am very petite) the last month before my bmsx surgery i worked out 4-5 days a week and was following weight watchers - i lost 1 pound in an entire month
and the weight is mainly in my middle area which i never had before
think it is a combo of menopause and tamox

[AlaskaAngel]

The problem of weight gain following treatment hasn't gotten much attention by treatment providers. My impression is that while medications may have some impact, the weight gain is mostly the result of slowing of the metabolism due to the initial treatment.

I was frustrated and baffled too because pre treatment I only had to exercise twice a week for less than half an hour to maintain and not gain, and then after treatment initially I had to cut my diet in half and increase my exercise just to maintain and not gain. With time it got even worse -- really miserably impossible.

I saw an endocrinologist, who by blood analysis and lab results said I was eating exactly the right things in the right quantities, and he suggested increasing my exercise to TWO hours a day, seven days a week.

Although the labs showed clearly that I am not diabetic, I requested a low dose of metformin. I still have to exercise 1 hour a day 7 days a week to maintain and not gain, but that is so much better than having to focus my life around endless exercise with no weight loss.

You can't go back to eating many carbs, but the metformin may help you to live and eat a little more "normally". Get your blood sugar level tested and consult with a health care provider.

AlaskaAngel

[jra40]

Thank you for your post - I am going to ask for a test on my blood sugar. My oncologist said that it would take about 2 years for my body to get back to normal and that there is no evidence that tamoxifen causes weight gain. I just don't believe her on that one.

Roz - my weight gain is the same as yours in my mid section. I'm fighting menopause right now so I think that is another contributing factor.

I think your right about cutting back on the carbs, I'm going to try hard on this and see what happens.

[jra40]

Just found a great explanation here: http://www.breastcancer.org/tips/nut...at/lose_weight

[jaykay]

I gained weight with tamoxifen - about 5 lbs - and I worked out pretty much every day and watched my diet. Also had serious fluid retention and had to take a diuretic every other day.

I lost the 5 lbs within 1 month of completing tamoxifen. Don't take the menopause factor lightly. I was post-menopausal pre BC and was fighting the weight battle then. My doctor told me that every 10 years your metabolism slows down and I either had to work out more or eat less. Unfortunately, she had been proven right every 10 years

[Hopeful]

There is also an additional, hidden culprit in standard treatment (i.e., chemotherapy) that affects the ability to lose weight. Steriods are given as support drugs for the chemo. The affect of steroids on the body is to decrease muscle mass, and decreasing muscle mass equates to burning fewer calories when you move around, which results in weight gain over time.

Hopeful

[rhondalea]

If you're having blood glucose checked, also have thyroid checked (minimally TSH, FT4 and T3--some people prefer FT3).

I started out with a bad thyroid, but cancer treatment is known to cause thyroid problems, so it would be wise to rule it out.

[AlaskaAngel]

jra40,

That is one of the best summaries about post-treatment weight gain for bc patients that I've seen - thanks for posting it.

Hopeful,

Thanks for that key reminder about the use of steroids and how they affect weight gain long-term, long after they have been stopped. Some patients refuse the steroids. I wish I had known that was possible -- although I don't know if it is possible with the use of such medications as the taxanes. (I had CAF, not a taxane.) To that I will add one more explanation for weight gain -- treatment causes female testosterone levels to drop dramatically, and testosterone is what helps to build muscle tissue.

As the article said, there is wide variation among us. On a personal basis, I can't quite agree with this comment in the article:

"Losing weight becomes much harder as we grow older, but it can still be done with careful diet changes and exercise."

I know they are just trying to encourage the entire group to do the necessary nutritional restriction and to do more exercise... but it sounds to me like we have been doing that and for us it hasn't been enough to help us out. They still don't seem to truly comprehend that fully. I think using metformin even though my blood sugar is in the normal range is what keeps the glucose level from spiking, and my totally unsubstantiated guess is that it boosts the cellular metabolism in some way. The nice thing about metformin too is that there are trials in progress using metformin for those who have been treated for breast cancer because it may reduce the recurrence rate. To me the logic behind that is that the metformin is reducing weight problems as well as using the energy for cancer cell death.

http://www.jeffersonhospital.org/The...ht-cancer.aspx

[Joanne S]

Very interesting. Thanks for sharing!

[karen z]

The problem of weight gain (and difficulty) losing is one of the things that women talk about a lot regarding cancer meds. Still, many cancer wellness programs allow free participation for exercise classes, gym membership, etc. for a limited amount of time- during treatment and for awhile after treatment. It would be great if more cancer wellness programs treated the issues of nutrition and exercise as something that were long term issues. This is not to say that many hospitals do not have "indefinite" programs of sorts. But it seems that "complimentary" exercise programs are one of the first to be cut off. I just wish that more hospitals recognized the need for lifetime changes and made it as easy as possible to help former patients who might help longer.

[Kellennea]

I gained about 25 lbs during my time on Tamoxifen (a little over a year). I did thyroid and glucose testing - both were normal.

I ended up having some complications because of Tamoxifen and was taken off... Ive been off since the end of August and the weight is coming right off. So far I've lost about 14.5 lbs and thats without trips to the healthclub (because of surgery, I am restricted).

I was so happy to be off of Tamoxifen!

[bejuce]

Ha! Looks like it's not just me then. I also packed on 20 lbs with treatment. I do hour long work out classes at work 4x week (spinning, kickboxing, and body sculpting), a long bike ride on most weekends (will do a 50 mile one on Sunday) and eat healthy for the most part. I do not drink alcohol (except for the occasional wine tasting) and my only vice is a can of diet coke and the now more prevalent candy for Halloween. I had a sugar test recently and it was normal at 90.

I trained and completed a century (100 miles) bike ride in Tahoe in June and thought I was going to lose weight with it but it remained the same. I think I'd literally have to be in the gym 2-3 hours a day and eat only raw veggies and drink water to lose weight (not possible with my lifestyle as a working mom of 3).

I have a friend who is healthy (never had any cancer) and who just trained and completed a marathon. She lost no weight during the process. I thought that maybe I could train for a marathon to see if it would help but based on her experience and my attempts to lose the weight, I doubt it.

I've made peace with it for the most part but it is really frustrating to experience this especially when relatively young. My beloved oncologist tells me that I should just focus on living life the best I can and not worry so much about the weight as it will come off eventually when I stop Tamoxifen (at least I hope so!)

If any of you have any weight loss successes to share, please do!

[TanyaRD]

As many of you have responded weight gain after a breast cancer diagnosis is very common. What is interesting is that women with early stage breast cancer not requiring chemotherapy often experience the same weight gain therefore it has been difficult to say it is chemo related. Most women experience a gradual menopause (for better or worse!) whereas with anti-estrogen therapies associated with breast cancer and/or surgery to induce menopause results in a rapid onset of menopause. Weight gain is common in post-menopausal women, especially in the abdominal area. I might theorize that the weight gain occurs more rapidly post breast cancer due to the rapid hormonal changes. Additionally, I believe there are other significant changes that may occur such as decreased activity due to fatigue or depression or even long treatments. Certainly this wouldn't apply to all but could be compounding factors. Interestingly, we don't see this weight gain with other diagnoses.

I wish there were easy solutions/answers for this issue. I counsel my patients to be as fit and healthy as possible. We know without a doubt that a healthy, antioxidant rich diet and regular exercise are protective against cancers, heart disease, type 2 diabetes, etc. The greatest benefit is seen when the diet is rich in antioxidants vs. supplementing a poor diet. There is also significant research demonstrating the importance of a low saturated fat diet. Fats in the diet should be primarily monounsaturated. Exercise is not only physically beneficial but known to help with cancer related fatigue in addition to being a great stress reliever.

One additional area that should not be overlooked is sleep. Sleep deprivation may also play a significant role in overweight/obesity and the difficulty in weight loss.

[Hopeful]

Most women experience a gradual menopause (for better or worse!) whereas with anti-estrogen therapies associated with breast cancer and/or surgery to induce menopause results in a rapid onset of menopause. Weight gain is common in post-menopausal women, especially in the abdominal area. I might theorize that the weight gain occurs more rapidly post breast cancer due to the rapid hormonal changes. Additionally, I believe there are other significant changes that may occur such as decreased activity due to fatigue or depression or even long treatments. Certainly this wouldn't apply to all but could be compounding factors. Interestingly, we don't see this weight gain with other diagnoses.

Tanya,

I know that Her2+ bc affects more premenopausal women than post, but there are those of us who were dx after becoming post-menopausal. Do the weight gain stats apply equally to women dx after menopause?

Hopeful

[TanyaRD]

Hopeful,
That is an excellent question and honestly I am unaware of any research done in this area. In my clinical practice experience I would say I see younger women struggle more with weight gain but that is purely testimonial.

[AlaskaAngel]

One side effect of the use of metformin that I think is helpful with aging and menopausal changes is the loosening of stool, which helps for those who are not actually totally constipated but who find themselves taking laxatives more often despite eating lots and lots of vegetables and fruits and whole grains (like me).

My belief there is that taking a low dose of metformin not only helps to keep the blood sugar levels less spiky, but it also helps to restore more normal evacuation of stool and urination, and in the process, the more normal elimination and urination ends up in helping with weight loss as well.

[Cif]

IMHO, yes it is tamoxifen and the reason why I believe that is because I have increased cal burning activities and dropped cal intake and even tried fasting and gained 5-10 pounds a week on tamoxifen.

Before Tamox I could eat what I wanted (which my pref is fruit, veggie, lean protein) and could literally control my weight by food intake. Post Men, cal, exercise, fluid all being equal just add Tamoxifen and poof 5 pounds a week gain, now 10 pound gain in week three of Tamoxifen - and that is with cal dropped and added exercise of clearing 300 foot driveway of snow every few days (oh, Percocet has always been in play 1-2x week for myopathy/neuropathy pain breaks since April).

weight/treatment history (relearning reading and writing, spelling, and so much after chemo brain hit, so sorry this post bad):

102 pounds and chemo (TCH) started 1 mo after mast from dec-apr. Gained weight, expected (prohibited from eating fresh fruit and veggies per Dr to decrease infection risks - ate carbs first time in years, broke 10 years no pasta - was yummy)

122 - 110 feb- june Herceptin continues @21 days till dec
Got serious limb and brain issues after chemo's 4-6, if sit still pain issues got worse, used pain killers and cleaned house all day since it takes me days to complete a task that normally took 30 minutes before chemo.

102 pounds sept - dec 1 (dec 1 last infusion - yay)
Dec-Jan 102 pounds and in control of my weight including added silicon.

Jan started Tamoxifen and gaining 5 pounds a week first two weeks all else being the same.
Jan third week gained 10 pounds that week, only drank green tea, leek and cabbage soup made from scratch with slice of turkey - throwing out my normal super low carb high veggie and fruit diet to yet lower but not to point body will auto store when sensing intake too low.

115 - all in mid section, a place that was always an hour glass even when heavy. Looks like fluid retention - if true - then I'm going to drown ha ha.

The big problem is while researching how to resolve this I hit professional doctor articles about how Tamox increases hormone neg cancers by 100x's% vs the few % it decreases hormone pos.

Going to change years of exercise from mostly aerobic/anaerobic to weight bearing to see if that will fix.

Also read about introducing Metformin to control weight gain while it may also reduce cancer risks, but my research on scale 1-10 on that is .0001

Update March 27 2015

NO CARBS and limit fluid intake including water (not recommended) equals weight maintained. Add four hours (yep, it takes a lot with tamox) over the day of Kinect Adventures and lost 10 pounds and replaced couple of meals with Naturade's pea protein. Still unable to get access to metformin, GP will 'think' about it, Ono doesn't return calls unless fever or bleeding so that was dead end. Why I know it is Tamox and NOT meno, because Ono left me a couple months to recoup somewhat from very bad chemo results (falling down, memory, speech, losing time, lost in own house) before intro of tamoxifen, and with meno for a year no weight issues and ate normal and more without issue. Intro tamox and poof, serious weight and water weight issues and even men's extra large socks are tight and I'm a slender less than 5' pixy.

Choice is less food, water, and nutrition risks, or scoring metformin.

[jra40]

So I am revisiting my post from almost three years ago and not one pound lost! Actually, 5 pound gain unfortunately

Love reading everyone's responses again and it convinces me that it is indeed Tamoxifen. Bad news is I have another 5 years on it or if I hit menopause (which I have been going through for over 4 years), then possibly another AI. I am going to try and see if I can get Metformin prescribed - thanks for the recommendation!

I am having a hysterectomy with ovary removal soon. I was wondering if this will help on weight loss? I am so hoping it's not going to go the other way with more weight gain!

Blessings to all,

Jessica

[rhondalea]

When I started chemo, I had just hit 139.2 pounds. By the time I started tamoxifen, I weighed between 150-155. Seven months later, I was 156, and I was too tired to keep my food diary.

My weight went slowly but steadily up after that until I hit 175, possibly 180. Since last November 6, I've been keeping the food diary again. Interestingly, when I started phentermine (prescribed by my endocrinologist for my weight), my brain became sharper--just as I hoped--but my weight loss decreased. Nonetheless, as of a couple of days ago, I've lost 20 pounds (25, if I did in fact hit 180, but I don't have a scale measurement for that--I'm just estimating by the fit of my jeans).

I've got 9 more pounds to go to 146, which is probably a good weight for me. It's not that I don't want to get back to 139, but a little more weight is probably healthier, so that's what I'll go with.

I'm still on tamoxifen, and I hope to continue it for a full ten years.

I lost the weight by cutting out about 500 calories a day--sometimes more, sometimes less. The key for me is being mindful about what I eat. I don't deprive myself of anything I really want--in fact, I just ate a crispy brownie cookie (okay, two) from Whole Foods. Sometimes I eat chocolate. I listen to what my body tells me, and I eat accordingly.

I had one day when I was craving butter. Couldn't figure out where the craving came from, so I looked at my diary and realized I'd been inadvertently cheating myself of fat. Once I increased my fat intake, the craving subsided. More recently, my labs came back with low sodium and low chloride. I've always needed a little more salt that most people, and when I checked my diary, I realized I'd cut my consumption of salt by more than half. I was barely getting the lowest recommended amount. My water consumption had also decreased. As soon as I became mindful of getting more salt and water (starting with several days of drinking salted water), I started feeling better. A lot better. It remains to be seen if my labs are normal, but I'll have the answer to that in a couple of weeks. I'd put money on the outcome, though.

My point is that unless you're writing all this down, you have no way to keep track of your eating patterns and to correlate them with weight loss, weight gain and overall wellness. During my period of not using the food diary, I really didn't understand why I was gaining weight, because it seemed to me that I wasn't eating too much differently, but 100-200 extra calories a day adds up over time. You won't remember that extra 28 grams of pasta you put in your mouth, but your body will.

Without a doubt, endocrine issues can wreak havoc on weight lost. Persistence is key. I went a whole month without losing any weight at all (in fact, I gained a little), but I just kept doing what I was doing. Suddenly, I was back on track and my weight loss was exactly where it was supposed to be. (My food diary predicts the weight loss based on the information I input about myself and my food consumption.)

I'm not saying it's easy. I weigh everything I eat. Admittedly, over time, you get to know what certain things weigh, and that makes it a little easier, but the whole process of keeping records makes eating a bit more difficult. More important, you'll find that if you do weigh your food and insist on precise measurement of your intake, there are foods you will bypass simply because they're too much trouble. For example, bakery goods with no nutritional information on the packaging.

So while I believe the hormonals contribute to weight gain, I also believe their influence can be defeated. More important than losing the weight is becoming conscious of one's nutrition and how more healthy eating can be achieved, but weight loss is a nice side effect.