Weight Gain after Breast Cancer Treatment

renzkay55

Hi everyone,

I am rather new at this. I was diagnosed with hormone positive breast cancer in 2010, and went thru a double mastectomy. I was put on Tamoxifen for the first few years because I was not in menopause but it put me in a chemical menopause. I initially lost and maintained my weight because with the Tamoxifen I initially tasted a chemical taste and food did not taste the same. My bones ached but I was still able to exercise (ride bike, walk, etc.); however, after my doctor determined I was in menopause he started me on Arimidex, and that is when I experienced weight changes, depression, joint aches and pains, etc. However, the most disturbing was the weight changes. Has anyone else experienced this after being on these types of cancer medications?

I was looking at the other subjects being discussed in different forums, and was not sure where this discussion should fit in. I also saw a new study being conducted under the Forum: Day-to-Day Matters, Clinical Trials, Research Studies, etc. about a Phenomenological Investigation of Post-Breast Cancer Weight Management, and was thinking about joining the study but did not want to do it alone. Is there anyone out there willing to join me? The study sounds pretty interesting.

Kat

ChiSandy

Yeah, for me the worst side effect of estrogen deprivation (which, let’s face it, is how AIs work) is having had the brakes slammed on my metabolism at the same time my desire for “comfort foods” has increased. I’d been assiduously low-carb before my diagnosis, cheated awhile between dx and the end of rads but managed to hold my weight steady. But after the first 6 months on letrozole I found that my activity level didn’t seem to make a dent in my weight and it was getting harder and harder to control hunger (and “healthy” foods simply did not satisfy me the way they had before). If I didn’t like to travel and enjoy food, and if I didn’t mind yet another operation, I’d be making a beeline to the bariatric surgeon. I’m not going to take that study, since I don’t want to be reminded about my failure of discipline (and discipline’s greatly reduced effectiveness to begin with). I’m distressed enough about that without having to talk about it. Just typing this post has been enough of a bummer, thank you very much.

sbelizabeth

Me too, ChiSandy. I've struggled with my weight all my life--I come from a family of big people--but being athletic and reasonably watching what I ate, I was able to hover in the "barely overweight" category. Now, with my genetic and medical history, along with the AI meds I take to save my life, I can lose 5 or 6 pounds by being very, very hungry all the time, but the weight loss stops there. It's infuriating.

Also infuriating was stepping on the scale at a doctor's office and having this conversation--

• Doctor: what do you do for exercise?
• Me: I mountain bike.
• Doctor (whose eyebrows shot up, I think he was expecting me to admit I sit in a Barcolounger all day) OK...well...you need to be careful with every single bite of food you put in your mouth.

Hopeful82014

"you need to be careful with every single bite of food you put in your mouth." And where's the quality of life in that?

I find it ironic and troubling that avoiding weight gain is seen as such an important factor in staving off recurrence (as well as the cardiac issues to which our AIs make us prone) and yet these drugs make it so very, very difficult to do so. What 's more, I don't think the oncology community cares - they blithely go on about "nutritional counseling" (as though most of us are unfamiliar with the elements of a healthly lifestyle) or suggest adding more exercise (to the 6+ hours a week I already log). Thus, there's no interest in developing alternate drugs, or truly effective, informed approaches to assisting those of us who've been sentenced to ten years on these pills.

I'm grateful for AIs but, like Sandy, have found the weight issues resulting from use to be the worst side effect - and at this point, it's almost unbearable.

KBeee

Breast cancer and thyroid issues go hand in hand so getting thyroid levels checked might be a good idea

renzkay55

ChiSandy, I wish you would reconsider participating in this study. I don't want to be the only one. The weight gain is not your fault! Taking cancer medications that decrease your estrogen levels is a big part of the problem and a problem that no one tells you about. I did not know about it until I read the side affects of the medications, and realized that it gets worse the longer you are on the medications. The side affects become more pronounced the longer you take them and it seems that oncologist want you to stay on them longer and longer regardless of the side affects. Kat

renzkay55

sbelizabeth…, ok, I have to admit I laughed out loud when I read the exchange you had with your doctor. There are so many medical providers that are clueless about what we are going through and that is why it is so important that we all participate in this study....so our voices can be heard. I hope you participate in the study as well because we as a group have a lot to share, and hopefully the medical providers can learn something from us.

Kat

renzkay55

KBeee, you are so correct! I have Graves disease but go back and forth from being hypo and hyper! My doctor wants to kill my thyroid but after all the surgeries I have had related to my breast cancer I just can't face it right now. What do you think?

Kat

renzkay55

Hopeful8201…, you are so correct! That is one of the reasons I stopped taking the IA's after five years. Especially after almost dying from a stroke, which is another side affect of the AI's that your oncologist does not tell you about. Yes, almost a year ago I had a spontaneous bleed in my left eye and became blind, two weeks later I was having these awful headaches and went to the ER. My blood pressure was 226/106 I was close to having a stroke. When I mentioned this to my oncologist he argued with me! It was then and there that I ended that relationship and found a new oncologist who supported my decision to stop AI's. My new oncologist focuses on survivorship care which is a very neglected area. Hopeful8201, it sounds like you would be a great candidate for that study I mentioned. I emailed the researcher and found out that she is just like we are, a breast cancer survivor dealing with her own weight management issues, which is why she chose this type of study to help people like us and hopefully let other healthcare providers understand what are issues are and develop interventions that are helpful. Kat

Hopeful82014

KBeee - yes, you're right about thyroid issues, and some of the symptoms (dry skin/hair, weight gain) could be attributable to either AIs or thyroid. At least in my case my MO did check thyroid levels before suggesting a drug holiday followed by a change of AI but did not do the more sensitive test for (I think) free T-4 - I may ask her about that.

Renzkay - Thanks for the additional info on the researcher, which is helpful. I'm disinclined to take part in studies such as that but appreciate knowing more about her interest in the topic.

CindyRecruiter

Just found this site today! I Googled depression and breast cancer treatment. I started Arimidex about three months ago. I feel like crap, crying sometimes, sad, trouble focusing, brain fog, and the weight gain. Nothing satisfies me expect carbs and sugar.

TarheelMichelle

I have been on AIs, and am shocked by the depression and weight gain. How does any woman handle this? I consulted a nutritionist on Maven, and she was great. (I have a discount code if anyone is interested.) I started a food diary, at her suggestion. (MyFitnessPal). I knew my treatment had launched a sweet tooth, I had no idea how much sugar I was consuming. Omg. So ... I cut out the sugary yogurt, the breakfast cereal, the cookies ... Lost 5 lbs in the first month, haven't budged an ounce since then. My treatment makes me fat, and radiation ruined my ability to breathe during exertion. No way I'm going to lose weight with walking and Pilates, the only exercise I can manage, which I have to rest the next day after, I'm so tired.

Fighting cancer is tough.

dtad

Hi all...This has always been one of my complaints about anti hormone treatment. I recall a member saying her doc claimed that daily exercise reduces the recurrence rate by 40 percent. Now I don't know if this is a scientific fact but even if its close, I don't understand the rationale on prescribing drugs that make excersise and weight loss so difficult. Good luck to all navigating this disease.

Warrior4sararyan

HiTarheelMichelle,

I too, am new at this. I had a double mastectomy in September and just had my exchange surgery 5 days ago. I was on Arimidex for about three weeks and took a break from it as I developed a breast infection and my oncologist thought it would be a good idea to take a break before my exchange surgery. I have never felt so bad. Every joint hurt. Every injury I have ever had started hurting. Broken elbow,ACL,planter fasciiitis,achey muscels and bones. I could not sleep. During those three weeks,on Arimidex,I was able to work out(now I have to wait another 3 weeks to start my workout program,due to healing from this last surgery)I really didn't have much of a appetite but I gained a couple pounds! The side effects are tremendous! My oncologist said I will need to decide if these side effects are worth the benefit of this medicine. I am looking to get a second opinion on what to do. My cancer was caught very early and my tumors were very small and no lymph nodes were involved. I think this Arimidex will definitely affect me when I go back to work as a international flight attendant.

I would love any insight from anyone on this same medication.

Thanks,Diane

jjohnstonkay

Hi Diane

I too was on the Arimidex and decided to stop it after two and half years. Another thing the doctors don't tell you is that the medicine can contribute to cardiac issues such as high blood pressure and stroke. I almost died of a stroke about a year ago. I presented to the ER with a blood pressure of 126/106! When I told my oncologist he denied that was a problem of the Arimidex. I changed doctors. But now I am on three different B/P medications!

It is a hard decision but arming yourself with knowledge is a first step.

Kat

jjohnstonkay

You should volunteer for the study on weight gain during cancer therapy. It is a really good study and a chance for our voices to be heard. The lady doing the study is very nice and understanding. She is a breast cancer survivor too.

Kat

Warrior4sararyan

HI Kat-


I already have high blood pressure and am on medication for it. I am worried about blood clots and flying on long flights. It is a hard choice to make. I am looking for a second oncology opinion. It is such a big decision and a scary one.


I have emailed the researcher about weight gain and cancer.


Thank you


Diane

wallycat

I'm a dietitian and I "know" what is supposed to work and how people get counseled. Arimidex destroyed my self esteem and the weight was only part of it. I tried low-carbing, tons of exercise, all the things I "knew should work" and the weight kept creeping up. It took nearly a year after I stopped the meds before I could lose any weight and at least not gain MORE weight.

It is very frustrating. Similar to cancer, when you do "everything right" but the outcome is wrong, it is demoralizing.

Best to you.

Anonymous

My exchange with my doc was similar: "at our age, (she said) we have to eat less and exercise more". Considering I eat about 1500 cals a day and exercise more than most women my age, and still don't lose weight--all I can say is thanks a lot for nothing, MO.

In order to lose 5-7 lbs late this past summer I had to get giardia. Seriously. I had to get really sick from a parasite I picked up while guiding a river trip in order to lose 5 lbs. Have I managed to keep it off? I'm afraid to check.

Maddening, the cavalier attitude of docs: take this pill and leave me alone, it feels like.

farmerlucy

Humiliated and disgusted at how I have "let " myself go. Up 30 lbs since dx, sprinkle in menopause and bouncing from Tamoxifen to Femara to Arimidex and back to Tamoxifen. I swear Arimidex made my ligaments feel inelastic and dried out. I've spent the fall in the land of Denial, refusing to jump on the scale until. this. week. Ugh. Just can't seem to find that balance between enjoying food and not overdoing it. Talk about stress/emotional eating.

I'm signing up.

mcshep777

I know that since starting Arimidex 6 months ago I have put on about 15 pounds. Can't sleep, my bones throb, hot flashes and I am always so tired. Getting through each work day is a real challenge. But the side effects of other treatments have their own set of problems. 😥

Beatmon

I'm not on any hormonal, so I have to chalk my weight gain up to miserable joints from TaxaneH and P, anxiety and love of Cabernet! I try and that seems to ramp me up to eat more

Bagsharon

Ugh, I haven't even started AI yet and I've gained 30 lbs since my diagnosis. I have PCOS and my weight has always been a struggle. That combined with steroids and the inability to find time/energy to exercise has not been kind to me. Earlier this year I ran my first full marathon. Now I can't run a flight of stairs without getting winded.

Outfield

Well, add me to the discussion. I never had weight issues until now. I've gained 25 pounds since starting anastrazole. It's so frustrating. I'm not eating because I'm bored or lonely or it's just what I do for fun - I eat because I'm hungry, and I never eat crap.

I can't find the study, but would be interested. Anybody know what the post is called or who posted it?

Luna52

I have my filled prescription of Femara sitting on my desk as I type. I was supposed to start it in November but haven't. Each week I vow will the the time that I start it. I think Jan 1 will be the time.

Following my BMX, I had underarm cording and chest lymphedema... despite having only 1 node removed. I've been in PT for several months working on that. Prior to my diagnosis I was overweight (BMI) but a physically fit 64 yo woman. Now I can't do anything near my old exercise routine without aggravating my lymphedema. Taking a drug known to make it harder to control my weight and maybe even to exercise is really concerning to me.

I had 2 tiny tumors caught before they could get really evil and aggresive. They were both small enough that, although one was HER2+, herceptin was not advised. I "threw the ball long" and got a double mastectomy. Wide clear margins and sentinel nodes clear. Yes, I know that doesn't provide insurance against recurrence. Yes, I know that they were estrogen positive.

Its a struggle to figure out the best way to stay as healthy as possible.

Nancy2581

Well this thread is making me even more anxious. Currently, I am on tamoxifen. When diagnosed I lost 10 lbs from all the stress and anxiety. Ahem I have gained it all back plus a few pounds. I'm still at a decent weight (would like to be less), but what worries me is the weight gain doesn't stop. It keeps creeping up and this is on tamoxifen (I did get thrown into menopause from chemo). In a few years I'm suppose to switch to an AI - more weight gain - no thanks. I may not switch, but at this point I'd be happy if the weight gain would just stop creeping up. I hate this.

Nancy

farmerlucy

https://community.breastcancer.org/forum/73/topics...

Here is the link to the study info. I signed up, and it looks to be interesting.

Meow13

Well I have some hope after stopping AI drug over a year now. I feel better the weight is slowly coming off. I wonder if I'll ever get back to where I was before cancer. I am trying but it is discouraging.

I just saw a picture of me from 2 years ago yikes I do look better now.

ElaineTherese

I lost 15 pounds on chemo, but it's back. I can't really blame the Aromasin; I think I was so happy that my taste buds were back to normal that I ate more than I should have. Fortunately, I've been hovering around the same weight now for about six months. I have a three-week break from work -- maybe I'll get back on the exercise bike again.

Meow13

The reason I think I am losing weight is getting serious onn calorie counting added with 1 hr aerobic exercisee during the weekdays. Alot of work and seeing slow results.

Meow13

Yes I can blame AI drugs for weight gain it is a steroid.