Uncontrollable weight gain

[Rhwright12]

Has anyone else experienced uncontrollable weight gain? I’ve gained about 25 or so this year. I’ve gained 2 pounds since Sunday. I started discussing this about a year ago. They finally ordered Hormone tests in February...I got the results in August! 😱🙈😱 They then told me they weren’t sure what it means that my Estradiol was Post but my FSH was Pre! Seriously 6 months and that’s the answer I got...Saw the NP 2 weeks ago...Lord help me! They sent me to a Nutritionist who is pretty clueless. Basically 20 minutes of Eat this Not That. No seriously I eat healthy and do Yes.Fit virtual races. 121 miles in August. That’s not the problem...The meds are putting weight on no matter what. But here we are at 190! Got to stop the bleeding sooner than later...😡... I’ll be looking for a second opinion this week. I need to finally respect myself enough to look for a team that is interested in helping me and my condition specifically...😀

[Hidden]

Hi Rhwright12!

Oh, gosh, I'm sorry but I don't have an informed answer to your question! Is it possible that you have an unrelated thyroid issue?

I know that I gained a few pounds on Letrozole + Ibrance, but that really might have been related to the oopherectomy (sp?) I had at the same time? Chemo, five years earlier, had already fried my ovaries, so who knows what difference it made...

I wanted mostly to give you a "thumbs up" on your pursuit of a team that can help. Please do let us know what you learn...

Wishing you the best,

Lynn

[Betbop]

I most definitely think at this point a second opinion is the way to go you certainly deserve some answers. Best of luck to you.

[Tam-56]

That’s not right! You know your own body and that it is not normal for you. It’s frustrating not getting support from the professionals! Time to get answers elsewhere. Good luck. Please keep us posted.

Maura❤️

[stardust1965]

Hi, I’ve written about this previously on this board but in case you didn’t see it I’ll repeat my experience.

I put on a lot of weight (3 stone or about 40lbs) and couldn’t shift it. I used to say I just look at food and the weight goes on. At my MBC diagnosis when trying to find what was wrong with me (these things are never straightforward) I was diagnosed with thyroid cancer and hyperparathyroidism. A simple blood test for this is all that is needed to diagnose. Four months later I had an operation to remove my thyroid and the one faulty para thyroid and poof the weight melted away! I eat healthily and pretty much as I did before just without the weight gain.

Of course everyone is different and it could be your meds but I thought it worth mentioning as I had never heard of hyperparathyroidism before. A goggle search will show you the symptoms like constantly being thirsty, constantly wanting to pee, confusion, etc.

I hope you get to the bottom of your weight gain as it made such a big difference to me physically and mentally. And definitely get a second opinion.

[Sunnydrinking]

I definitely gained weight whilst on palbo & Letrozole.

I’m now on a clinical trial, an oral SERD & losing weight slowly but surely! As I’m very overweight (all that sunny drinking), I’m very pleased about this !

Hope you get some answers but it could well be the letrozole ...

Jo xx

[Rhwright12 in reply to Sunnydrinking]

What’s it called if u don’t mind me asking? And I’m on Annastrozole and Zoladex, Herceptin Perjeta and Zometa...😱

[Sunnydrinking in reply to Rhwright12]

Hi

I’m on the Emerald clinical study and I taking elacestrant.

Jo xx

[Shelby4now]

Hi Rhwright12

I sure hope you get answers soon. Its discouraging when you keep gaining weight for no apparent reason. A few years ago I gained around 50 lbs or so , probably more I stopped weighing myself after that. I started losing weight with a few medication changes and I m back to under my original weight.Thinking of you . Take care

Shelby

[kearnan]

Unfortunately, for the most part, I think the meds do this. I have a friend that had stage iv and is now taking some med once a day to avoid it from reoccurring after she did chemo, breast removal and radiation (which she said was 10x than the chemo). Her face is severely bloated.

I think it comes with the meds. I had wished for a silver lining and has asked when I started this journey, will I be losing alot of weight and they said No, actually you will probably be gaining weight. I thought geez, not even a silver lining.

[doomkiller]

Hi Rhwright12

I certainly empathise with you. I gained a great deal of weight on Zoladex, Letrozole and Ibrance. In addition, my stomach ballooned so drastically that I felt I was going to explode. Four months ago, I stopped all medication, since none of them seem to be working. Radiotherapy, however, has stopped the cancer in some of the sites where it spread but not controlled further spread to other areas in bones. Most of my days are spent dealing with nausea, dizziness and increased fatigue. I don't have much of an appetite and hardly eat . but I'm terribly overweight, can't get rid of the huge stomach, etc.

I only wish I could shake off this weight. I have never been so overweight since taking this awful cocktail of meds. My hair feels course and lacklustre ...

Tried changing my diet as well. Alas...Fedup now. Never felt like this. Knocked my confidence so badly. My clothes are lying unworn. Looks like my days of being 8-10 are gone. Even a size 12 seems too tight. All this in a space of 8 months.

I wish there was something I could do too.

Wishing you all the best. If you do find the solution, let us know.

Cherie

[Rhwright12]

U sound like my size...I put on a brand new size 12 this morning to go to work and it’s like these are so not making it till Christmas! Plus u know they say the COVID vaccine won’t work for those with a BMI over 30...😱🤷‍♀️😱Great!

[mariootsi]

I would suggest a second opinion.

[Grammy1960]

Hi Rhwright12,

Yes. I have also. My oncologist told me with these meds (Ibrance and Exemestane) it was normal. I am also am battling MS along with MBC. With the MS, the weight gain is very hard on me with regards to my legs. I have gained 15 lbs since being on hormonal therapy. I am 5' tall. The extra weight is causing me problems concerning MS. I have never been this heavy in my life. My oncologist suggested i talked to my PCP to have my thyroid checked to make sure i did not have a problem with that. It came back normal. After gripping to my PCP about weight gain and how it is causing difficulties in my legs, he put me on Effexor XR. He told me this anti depressant will aid me in lose of weight compared to weight gain like all other anti depressants. I have currently lost 5 lbs. But then again, i eat very little. Lol. It maybe helping or not. But i have quit gaining weight, just stayed the same or either lost. I hope this helps you. Take care of yourself and stay safe.

[diamags]

I too have gained weight! A lot. I asked my doc and found out that weight gain is "normal" with these meds. Grrrr. If I crack down and track my calories, I can lose weight. But it is a horrible slog. With no exercise, 1200 cals per day. I do walk my dogs everyday, so that gives me an extra leaf of lettuce (I'm only exaggerating a little there!) I think the EMERALD study mentioned above is interesting to me!