Weight gain with Tamoxifen or Letrozole

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jajjaaj
jajjaaj Member Posts: 60
edited May 2019 in Hormonal Therapy - Before, During, and After

I honestly needed to lose 10 lbs and thought chemo was a small silver lining. I mean, seriously, get diagnosed with an aggressive fast growing cancer, you got to find joy in something, right? Imagine my surprise when I gained weight, a lot of it. Oncologist placed me on Tamoxifen after all treatments were completed, and I kept gaining weight. I was working out and eating less, and my metabolism just wouldn’t cooperate. I knew it was the drugs, but couldn’t get a straight answer. Fact was, no body wanted me to get off the Tamoxifen. I stopped taking it at the end of 2017, and a lot of the weight dropped off. New oncologist, she sends old tissue samples to a research facility in Denver and discovers that I have a 33% reoccurrence without Tamoxifen. I’m not happy, but hey, what’s quality of life when you have quantity. So she starts me on Letrozole 3 months ago, and guess what? Weight is creeping back on, and im back to being moody. There has got to be another way.

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  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited April 2019

    Hi Jajjaaj, I had the same side FX from femara, increased weight, lethargy, lack of motivation. I was like that for 12 months and decided I’d had enough and went on the Keto Diet. Might not cure cancer bu sure has improved my QOL - have dropped kilos since January this year. I have started a thread called “Keto” if you want to check it out.

    Cheers,

    Jackie.

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  • jajjaaj
    jajjaaj Member Posts: 60
    edited April 2019

    Thank you, I will. 

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  • ready2bedone
    ready2bedone Member Posts: 95
    edited May 2019

    Yes, I've gained almost 20 pounds on Letrozole in the past two years even though I have been far more active. I can't seem to get any of it off. It is very frustrating since I had lost 140 lbs with weight loss surgery 2 years before my breast cancer and had kept it off. It's very depressing to see the scale continue to climb.

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  • TWills
    TWills Member Posts: 679
    edited May 2019

    Don’t mean to turn this thread into a diet thread but...

    Also started gaining weight during chemo and continued to on Tamoxifen. Had no idea that was a possibility!!Although I could account for the weight gain with what I was eating, it made since, I was eating a lot. Started low carb, not quite Keto, Feb 21 and have lost 38 lbs total. Lost the 30 lbs I gained during treatment and 8 I needed to lose from before. I have to say, it’s been kinda easy. Maybe carbs were my weakness but the pounds kinda fell off. Time will tell how hard the maintaining will be.

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  • DawnS1962
    DawnS1962 Member Posts: 205
    edited May 2019

    TWillis, I have a friend who was diagnosed with bc in 2016. She's gained 36lbs on Tamoxifen.

    You post such great info. I just ordered Retanol and Vitamin C serum from Amazon after I read your post about the effect chemo has on your skin. With all the crap we have to deal with with bc you would think we'd get a break when it's over. I guess no such luck.

    Thanks for your tips!

    Dawn

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  • TWills
    TWills Member Posts: 679
    edited May 2019

    Happy to help DawnS:) I learn so much here and like to pass things I know along as well. Slowly add those to your skincare regimen a few days a week and that can help with sensitivity and I wouldn’t use those at the same time. So maybe the retinol at night and the vitamin c in the morning. Most everything else can be used together but those two can be a bit irritating at first. Although retinol isn’t near as strong as Retin A so you might be just fine.

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  • MeggieG
    MeggieG Member Posts: 2
    edited May 2019

    I am just starting the process leading to Mastectomy and the doctor mentioned meds after surgery.  Years ago I took antidepressants and voila the 25 pound weight gain in about 24 months.  I was able to wean off those meds, didn't have a recurrence of depression, but it took me a VERY long time to lose that weight.  I swore after that I would NOT take any med that caused weight gain.  I looked up Tamoxifen and another, and they don't list weight gain as a side effect.  (BTW Neither did the antidepressant med).  I remember the pscyh I was working with said that they avoid listing this side effect as they know a lot of women won't take a drug if that is up front a side effect.

    I talked to my PCP/GYN about this last week and he said the decision to take these meds is totally mine and a lot of factors will come into play.


    I just wish drug companies were HONEST about how many people gain weight on these meds and how much on average is gained.  Also, the "advice" that you just have to be careful "not to eat too much" while you are on them is offensive.  When on antidepressants, I don't think I ate any more than I had before, I was a lot "slower" in thinking and movement, but basically had the same activities I had to do day in and day out.  I really thing the change was more metabolic than appetite stimulation, but what do I know!

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  • pupmom
    pupmom Member Posts: 5,068
    edited May 2019

    Oddly, if you look carefully at the SEs of Tam and Effexor (antidepressant) both list weight LOSS. Go figure!

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  • wallan
    wallan Member Posts: 1,275
    edited May 2019

    I was told by my MO that AIs and tamoxifen put weight on. I have gained 20 lbs too on Arimidex. The MO says yes, we know you gain weight but you still need the therapy.

    I will try the low carb/keto diet.

    Thanks for the info

    wallan


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  • jajjaaj
    jajjaaj Member Posts: 60
    edited May 2019

    Meggie G Not sure who you are addressing, but I assure you, I never said a person must eat less, and I don't think anyone indicated we were all eating 'too much'. Though, for me, and I speak for me, my appetite has increased and I do eat too much. More than normal, and I do believe the meds encourage this and slow down my metabolism. It's a vicious cycle. But you are right that doctors neglect to mention weight gain because women don't want to gain anything. I just think with all the technology, there has got to be something better, because the stress of gaining weight when I just want life to get back to normal, sucks.

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  • jajjaaj
    jajjaaj Member Posts: 60
    edited May 2019

    Kanga_Roo So I've been delving into Keto. Had no idea that lettuce had so many carbs, and I actually love salad! I don't even add any type of dressing, just happy with salt and pepper. I was talking to my sister, and find out she is already on the Keto diet and loves it! She's sending me info to help me get started. I also ordered the book, 'Keto for Cancer'. Seems to be a strong correlation (alledged) between carbs and the growth of cancer cells. Should be an interesting read.

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  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited May 2019

    Jajjaaj, Good for you! I got the digital version of the book and I keep returning to it to read bits. It is a lot to take in initially but it enables you to take control of your diet and get results. My cancer continues to shrink, and I feel as though I am doing something positive for myself. Hope it works for you too!

    Jackie

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