Major weight gain... looking for insight and advice!

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I've gained 60 pounds since starting hormonal treatment 3 years ago. I keep thinking I can't possibly gain any more weight, but the scale keeps climbing! I know I can do better nutritionally and with exercise, but I know myself and my body and this is much more than that.

I was on tamoxifen for the first 2 years and gained around 40 pounds. I switched over to Zoladex + Aromasin about a year ago and have since gained another 20. I just assumed the crazy weight gain was due to my hormonal treatment (I didn't get chemo), but then my PCP said she always looks at SSRIs when there is significant weight gain. And I realized that I switched antidepressants (from Prozac to Lexapro) at the same time I started tamoxifen. My MO still thinks its from the tamoxifen, Zoladex, etc. even though she says this level of weight gain isn't common (although she still sees it).

I know the research says people don't gain significant weight on tamixofen and AIs. But the research also says that about SSRIs. Meanwhile, I know it's one or the other or a combination! And I also know that everyone reacts differently to medications. I guess I'm an outlier.

My activity level hasn't changed at all since cancer, which is something the people that deny the hormonal therapy-weight gain connection usually point to. They also point to chemo, which I didn't get. I do know I've been eating more. My appetite has gone way up. But I also think my body is holding on to calories and fat more.

I'm wondering what other people's experiences have been. And if anyone with significant weight gain has successfully lost it? Mostly, I'm just super discouraged and daunted by how much weight I need to lose.

I'm going to switch antidepressants to see if my appetite normalizes. But in the meantime I would appreciate hearing from anyone else that has struggled with weight gain or found ways to handle it. Thanks in advance!

Comments

  • OCDAmy
    OCDAmy Member Posts: 873
    edited February 2020

    I gained 20 pounds since I was diagnosed in 2017. I have lost 9 pounds since January. I did Dry January and since then limit myself to two alcoholic drinks per week (mostly wine). Cut sugar back significantly as well as dairy and meat (I only eat poultry and no more than a few times per week). No snacking at all unless it is a fruit or veggie. Water or unsweetened tea and coffee with a little bit of oat milk. Exercise a minimum of three times per week, more if I can. I take zumba which is fun and a good workout. I only weigh myself once per week because your weight does fluctuate. It does get frustrating that it doesn't come off faster like it would have before chemo and AI but you have to keep at it. I am doing all of this to lose weight but more importantly to do as much as I can to prevent cancer from coming back. You can do it, you just have to commit to it.

  • mellee
    mellee Member Posts: 434
    edited February 2020

    Glad to hear your diet is going well! Exercise is definitely key for our health. I went to a talk recently where they quoted statistics saying it cuts breast cancer recurrence risk by 30%, which blew my mind.

    Have you noticed an appetite increase linked to your weight gain?

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited February 2020

    I have lost 30 pounds without much trouble... over about a year, some of it during chemo. I have been doing intermittent fasting (window of eating about ~10 hours, and window if not eating ~14 hrs for me...). When I eat, I eat a lot-- though all nutrient dense foods. i do have some carbs/treats here and there. But mostly I eat richly from vegetables and fruits, nuts and seeds; I am lucky to live in so Cal where the local produce is wonderful and varied. Some fish, some eggs, scant amounts of dairy/ meats. Also favoring anti cancer foods like cruciferous vegs, alliums, etc). I take quite a few supplements, exercise regularly and feel very good. I am 58.

    If you get rid of packaged food and eat only what farms produce, you can eat quite abundantly and not get fat. Corporate foods are what mess with our systems by being too carby, sugary and fatty per calorie and not enough minerals or phytonutrients.

    OCD amy, agree!


  • mellee
    mellee Member Posts: 434
    edited February 2020

    I've heard really good things about intermittent fasting. It's good for health as well as weight. Thanks for suggesting it!

    I'm already a vegetarian and I rarely drink. But I could definitely cut back on bread and sugar. I'm sure that will make a big difference too. But the more I research, the more I'm starting to think my SSRI is the most likely culprit for most of the weight gain. I have gained a LOT! And I've always been thin before, so it's been wild.

    I wonder if SSRIs are often overlooked as many women who get breast cancer also start taking antidepressants during treatment. For me, I was already on Prozac, but had to switch to Lexapro because of tamoxifen. The drug monograph for Lexapro lists appetite increase and increased weight as frequent side effects.

    I was just reading a 2018 study that found that if you experience at least a 3% weight gain in the first month you're taking antidepressants that you're at high risk of long-term gain (>20%). When I switched to Lexapro (again, the same time I started tamoxifen) I gained around 4 pounds, which meets that threshold.

    At this point, I'm on an AI, so I can switch back to Prozac. I'm going to do that and see if that makes a difference. I think I'll know fairly quickly by my appetite. I'll post back on this thread. Interested if anyone else thinks their SSRI contributed to major weight gain.

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited February 2020

    I am in the same boat. Gained about 15 pounds since DX and DR said I need to lose some. I think it may be somewhat related to Tamoxifen, but also slower metabolism as we age. I am trying very hard to exercise and cut down on carbs... but i hate excercising and love carbs..

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited February 2020

    I gained about 60 pounds total from the time I had my mx and went on meds until I finished with meds this year (9 1/2 years later). I increased my exercise and did my aerobic videos (I do Richard Simmons believe it or not) plus walking about at least a mile a day. NOTHING. Ate salads for lunch every day. Kept calories at a healthy limit. We are on a low fat, low carb diet, low salt as well, due to hubby's health issues anyway. Still nothing!! My MO told me as long as I was no meds keep up the exercise because good for my heart and body but do not expect to loose it while on meds. Don't get discouraged and keep on meds because it is keeping the cancer away.

    By the way....I did not chemo either because of onco score he said not worth the risk of doing it. Just long time on meds. Hang in and weight and healthy is better than cancer getting you!

  • mellee
    mellee Member Posts: 434
    edited February 2020

    I love carbs too! My MO suggested the keto diet and it sounds awful, but I'm considering it. Ugh.

    bcincolorado, thanks for sharing. You're right that in the grand scheme of things, cancer is way worse than weight gain. I'll definitely stick with my meds, but man does it get discouraging!

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited February 2020

    Hi!

    I lost 10 pounds during chemo, but I gained it all back and more afterwards (about 15 pounds over my pre-chemo weight). I lost about 10 pounds last year. All I did was to replace my diet TV dinners with salads. There wasn't much caloric difference between the two, but replacing prepared food with a fresh salad seems to have helped. Good luck!

  • gb2115
    gb2115 Member Posts: 1,894
    edited February 2020

    I agree keto sounds awful. I thought I saw a study somewhere... something about breast cancer and liver problems. Need to try to see if I can find it again. At the time of my dx, I had an acquaintance suggest keto to me. I looked it up and swear I saw something on pubmed about increased risk of liver mets with that type of eating.

    I've always thought an eating plan needs to be enjoyable and sustainable. I see miserable coworkers following keto, looking longingly at other people's foods. At the end of the day, does the eating plan still afford good quality of life?

    I gained about 10 pounds on Zoloft (ssri) despite not eating much. Jerk psychiatrist said I probably ate too much and recommended counting calories (even though I warned him that's a slippery slope for me, I would get obsessed with it). I weaned off the meds and dropped the weight in a couple of months with no extra effort. So, sometimes it's truly the meds and not what you are or aren't eating!


  • mellee
    mellee Member Posts: 434
    edited February 2020

    Interesting about keto and liver mets. Not all that surprised! I've heard that you can lose weight on it, but it's not healthy long-term. I don't think I could stick to it anyway. It's hard to do keto when you're a vegetarian.

    Glad to hear you dropped the weight after you weaned off Zoloft (and hope you ditched the jerk psychiatrist!). I hope I have the same experience you did where I'll start losing once I switch. I have a lot more to lose, but still, it's encouraging!

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited February 2020

    I don’t know much about keto but I was told to be more plant based - so I don’t eat red meat and cut down on dairy. My MO said fried food is the worst so I bought an air fryer and make French fries in it. I used to get leg cramps and joint pain. Now I don’t. So I think the diet is helping. Gaining weight is not good for cancer so we have to try to be at a healthy weight. So hard....

  • Palesa2018
    Palesa2018 Member Posts: 140
    edited February 2020

    I am convinced that the body holds on to fat more with ovarian suppression (rushed aging), I am on Zoladex and Tam. While I have not gained weight, I have not lost any either. I noticed that the minute I eat more carbs than normal I see it on the scale. So to at least maintain current weight I exercise intensely for an hour a day, six days a week. I have stopped eating all meat (only eating fish) and dairy and largely a vegetarian diet. Had expected weight loss over the last few months but have remained steady, which I am still grateful for.

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2020

    My onc started me on Paxil (paroxetine) in 2011, both for the anxiety/depression of dealing with cancer, and to help with hot flashes from treatment. Seeing no reason to stop, I just stayed on it until last fall, when I determined it was probably no longer useful for me.

    Paxil is known to be difficult to discontinue and can have uncomfortable side effects when stopped suddenly. I weaned very, very slowly over three months and had no problems.

    Since I stopped altogether in January, I've lost 10 pounds out of the blue. No diet, no change in exercise. I've noticed, though, that my appetite isn't as acute as it was before, and saying "no" to sugar, carbs, processed foods, is a lot easier.

  • mellee
    mellee Member Posts: 434
    edited February 2020

    Palesa, I agree that ovarian suppression makes it harder to lose weight and keep it off. I've heard it's pretty typical to gain 10 lbs or so, especially around the middle. I'm impressed that you've been able to keep your weight steady.

    Sbelizabeth, that's so interesting. Especially the appetite part. I think I'm holding on to weight more because of Zoladex, but my appetite is what's really making things hard. It's so much stronger, especially at night. I feel hungry when I know I'm not, as well. Someone said that could be increased stomach acid, which Lexapro can cause too. ¯\_(ツ)_/¯

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited February 2020

    Just curious as to what dosage of Lexapro you take? I take 10mg daily. I told my doctor I was worried about weight gain (and yes I've gained some weight) and he said he usually doesn't see weight gain from Lexapro at the 10 mg dosage, but he does see it at higher doses. So was curious to know what amount you're on.

    Nancy

  • mellee
    mellee Member Posts: 434
    edited February 2020

    I started on 10mg but went up to 20mg about a year ago. So the weight gain definitely started at the lower dose, but it does seem worse now.

  • Kara70
    Kara70 Member Posts: 4
    edited April 2020

    Mellee, it is very normal to gain weight from the breast cancer treatment itself, especially from chemotherapy and hormone therapy. I'm not sure if you went through sudden menopause as well from the treatment? I did at age 44 from the chemo alone and my body changed a lot in form, putting on weight in my stomach area where I was skinny before.

    It was weird though, I only gained weight after chemo and surgeries were over and a few months after I started on Tamoxifen, that is when I gained 10 lbs over a 1 1/2 year period. But....even though my weight stayed the same during treatment, I certainly lost muscle and gained fat, so technically I was gaining weight.

    Happy to tell you that five years after treatment and at age 50 I have lost most of the weight and have more muscle than before, mostly through consistent weight training and some cardio and eating only during a time restricted period of 10 hours per day, 14 hours of fasting, and by switching to a mostly plant based diet. It is possible, it takes work. Listen to all those in this forum about eating a healthy mostly plant based diet though, forget about fad diets! Yes, Keto can lead to weight loss, but it goes against all advice form major health organizations about a breast cancer prevention diet, which is one that is high in fiber, plant foods, and low in animal protein, fats, and alcohol. Also, you should never follow a diet just to lose weight and then have to switch to a diet that you can sustain. Then you lose precious time learning how to eat healthy for the rest of your life, which you can start now.

    Good luck!



  • mellee
    mellee Member Posts: 434
    edited April 2020

    Thanks, Kara. That's super encouraging!

    An update on my end: I've started working with a psychiatrist who specializes in oncology patients, and they added Wellbutrin XR to what I'm taking. I've now reduced the Lexapro back down to 10 mg and will stay on that for at least a few months, but the eventual goal is to get off the Lexapro.

    Already, the Wellbutrin has made a huge difference in my appetite, nighttime cravings, and hunger. My psychiatrist thinks that the Lexapro was the main driver behind my weight gain. Just an FYI for anyone on SSRI antidepressants to keep in mind.

    I do think the tamoxifen, then later exemestane and ovarian suppression didn't help and contributed to some extent. But most women talk about 10-15 pounds, and I gained 60 (and didn't have chemo). Just putting it out there because I never once suspected the antidepressant. I just assumed it was my hormonal therapy.

  • Kara70
    Kara70 Member Posts: 4
    edited April 2020

    Mellee, that is really good that you're working with the psychiatrist on the medicines to find the right one. I think that certainly must be helpful. I'm not as familiar with the side- effects of anti-depressants, but it does seem that many cause weight gain. I have a half brother with autism and he has been on anti-depressants since he was a kid and he's quite heavy, though the rest of us in the family are not. And the fact that you took tamoxifen and other estrogen reducing drugs can't be helpful.

    Make sure that your activity level is good and that you eat the kind of foods that most cancer organizations and other medical organizations recommend for chronic disease prevention and that is a mostly plant based diet, which it seems you were mostly doing anyway.

    I hope that your medication switches help you, good luck.

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