Any Stage 4s on Semaglutides (GLP-1s)?
I have lately thought about possibly going on a semiglutide to help lose weight. I have been dealing with breast cancer since 2010 (since 2019 at Stage 4). My weight has continued to creep up and I have struggled trying to the lose weight and I have lymphedema from cancer treatment. My MO told me about a year ago that he was fine if I wanted to try one but I have been reluctant until now. There seems to be a lot of positives from these medications and also some risks. Anyway, I currently take Ibrance and Faslodex. I was on XGEVA also until December 2025 when I was diagnosed with ONJ and had to stop taking it.
Are any Stage 4 people on any of these semiglutides (GLP 1s)? If so, what has your experience been?
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I took it for a few months and did lose weight, but it has side effects, and I had side effects from my other medication; it didn't help with the joint pain from the arthritis or have any effect on my mild lymphoedema, so I decided to stop taking as I was only losing weight but not getting any other benefits, and it's expensive.
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I’m planning to start in July when the Medicare Bridge Program makes it available for a $50 co-pay. My oncologist is all for it and told me about the studies that show a possible benefit for cancer patients.
I’m hoping my side effects won’t be too severe, I was lucky not to have suffered terribly with chemo and Herceptin - hoping Zepbound will be kind to me as well.
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Hi all, I was on semaglutide the year before I was diagnosed (Jan, 2025) and had lost 30 lbs. by that time. My sugar and cholesterol stats went to normal range and I felt great! I was diagnosed with bc when being checked for pneumonia-other than that, I had no symptoms at all. When I met my MO, I told him I did not want to stop taking the shots as long as they didn’t interfere with bc meds effectiveness. He was fine with me continuing as long as I wasn’t blind sided by side effects. In fact, he also was on the shots at that time! Big fan. For bc, I was put on Kisqali, Letrozole and xgeva. I was lucky to be able to manage semaglutide and the meds with really very little side effects. Burping was my biggest peeve but I was intent on getting/staying a healthy weight. The bc meds I tolerated well and I was on the full 600 mg of Kisqali!
I kept on them for most of the first year but not consistently due to two bouts of diverticulitis. Once I was stable again, late last summer I decided to try tirzepetide (zepbound) since that is thought to be more effective and I want to lose the last 5 lbs and then go on maintenance. Interestingly, I had bad side effects from Tirzepetide - the most distressing was dizzyness and bad abdominal pain along with diarrhea. I even tried taking the shots every 2-3 weeks instead and still those same se’s. I had to stop those shots. I have been off the shots for about 5 months now and have not gained any weight. I learned just how little I needed to eat to maintain my weight so I do what I can for portion control and I make sure I am keeping active.
I am now about to start new treatment because of progression found on my March PET scan ( pleural effusion and 2 smalls spots in my brain). I am on my 1st month of Faslodex and prob will be starting Verzenio in early July. Just finished 3 rounds of radiation (SRS) this week and feel good! I will wait to see how I tolerate the new meds before even thinking of going back on semaglutide for maintenance. I’m back to having food noises again and during this little med vacation (unwanted) I can see myself having less willpower these days. But, Verzenio may be all I need to keep weight off - I’m pretty scared of it’s reputation - praying I can tolerate it!!
That’s my story for now! I wish everyone an easy road - keep calm and carry on!! xo juliana2 -
Thank you all for responding and sharing your information. I have continued to research on it and it and I plan to contact my primary care doctor this week to see what all I need to do to get started. I am pretty sure he will approve it. I read online that going through your doctor, you need to get prior authorization from insurance and I don't know how long that takes but I would like to try to start it the last week of June or first week of July, so Olma61, we may be starting pretty close together if all goes well.
Sunnidays - I think they have been lowering the price on some of these recently.
cskinner - I just kept finding that for a lot of the side effects I have picked up from cancer treatment, including an autoimmune disease that was likely activated from my first bout with breast cancer treatment in 2010 have potential to be improved with a semiglutide. Hopefully, I get approved, it works and I have minor if any side effects.
eddiej - Good luck moving over to Verzenio. May it be affective and very tolerable for you!
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The big D has me frightened, at first all I saw online was constipation, constipation, constipation and I never had that problem so I figured well it can be managed. but then I saw that Diarrhea is pretty common with tirz and the Wegovy pill. I had a terrible “D” episode after antibiotics back in 2021-22 with uncontrollable diarrhea that lasted for weeks after antibiotics so….I never want to go back there. I lost 15 lbs from the diarrhea that time so I guess it was an effective weight loss method but 🤮
Herceptin/Perjeta also caused some diarrhea but it was easily controlled with Imodium and not the 'explosive' kind that I am reading about with zepbound and Wegovy. I'm starting to rethink my plan now.
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The Big D frightens me too! I already deal with it enough. Interestingly enough, I developed ONJ while taking XGEVA and ended up having to do 2 time a day antibiotic mouthwashes as well as having to go on antibiotics quite a bit when the infection comes back while we are waiting for the bone to break off. My primary care doctor had prescribed me a different antibiotic for my sinus trouble I was having. When my periodontist needed to prescribe the antibiotic pills that treats my ONJ infection flare ups right after that, he said that their was some sort of rare interaction that could occur from switching from one to the other so he told me to take probiotics while I was taking the antibiotic and to take for 2 additional weeks once I had completed the antibiotic. I have experienced much less problems with D while on the probiotics. I am not sure if probiotics are okay to be on full time as a MBC patient but I plan to ask my MO.
I contacted my primary care doctor and my insurance company a week ago to see what I needed to do to start a semiglutide. My doctor is on vacation, so I am on hold until he is back and then go in for an appointment and then they will need to submit a prior authorization to my insurance to see if my insurance will approve.
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Hi @cowgal I was told by my gastroenterologist and my MO that probiotics are fine to take. I have a history of diverticulitis so that is what got me started on them. I have to say that - knock on wood - I have no Gastro issues since I been taking them daily for past year. I also include fat free Greek yogurt in my diet to help too. This is while on Letrozole and Kisqali!
I take Align and have them delivered monthly from Amazon. I was on Semaglutide for a year and did not have bad gastrointestinal issues. Not everyone has bad se’s with the GLP1s. I lost 30lbs and have been able to keep it off so far.I am hoping the probiotics help me with my next treatment line Faslodex and Verzenio. No problem Gastro wise with Faslodex so far; we’ll see with adding Verzenio into the mix in next week or so. Fingers crossed!
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I rarely post here, but wanted to share my experience with Wegovy. I have been taking Wegovy for a little more than a year, and have lost about 35 lbs despite stopping the dose increase at 1.0 due to GI side effects. mainly nausea. Weight loss has stabilized so I may increase the dose in the near future. I still have at least 20 lbs to go to get to a normal BMI.
My Wegovy is covered by insurance because of previous CV issues, including minor stroke, since that is a labeled indication. If you have diagnosed sleep apnea, you may be able to get Tirzepatide covered by insurance because it is a labeled indication.
I have had metastatic breast cancer with bone mets to the spine since 2010. It is currently stable. I am taking Herceptin infusion once every 4 weeks (frequency decreased from once every 3 weeks earlier this year—Perjeta discontinued last year). My medical oncologist and all my other doctors have supported the Wegovy treatment. My A1C and cholesterol have decreased with this treatment so I am very pleased with the results, although sometimes it does make me feel lousy, although I can walk longer distances and my GERD has also decreased.
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@eddiej - Thanks for chiming in on the probiotics and your experience with glp1s! I was hospitalized with diverticulitis many years ago and I also have Celiac disease so I am very careful with my digestive system. I also eat Greek yogurt. I have been on Faslodex for almost 6 years with no gastro side effects from it (I do get periodic nausea from Ibrance that I can control with a anti-nausea pill).
@curious_one - Thanks for sharing your glp1 experience as well!
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Update: My primary care doctor prescribed me Zepbound but my insurance denied it and my choices were to try Wegovy first (you still have to submit for a prior authorization and get approved) or I could appeal their denial and see if they would change their stance. I went ahead and tried to get Wegovy. It was approved and started it Sunday night. So far so good. I plan to only weigh myself once a week and from researching it is normal for some not to have any weight loss for around 6 weeks so I am not raising my expectations too much.
Besides losing weight, I have several things that I hope this can help me with. One of those things is chronic inflammation. I noticed this afternoon that my stomach is less bloated than it normally is. I don't know if that will continue or if it is just a good day. Time will tell.
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Hi all! Just popping in here to provide some information on the topic you may find helpful:
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@eddiej - So far, I am not sure that I have any side effects. I have been tired but I get tired from my other medications and we are also dealing with a lot of heat right now and I am outside so really all that can cause tiredness too.
Mods - Thanks for the links. I had been apprehensive about using GLP1s for a long time and kept running into information like this that kept showing how they could positively impact my health. A healthier me positively impacts my husband and my family. I still remember my first MO (he retired) telling me back in 2010 that it would be good if I could lose some weight but saying that he also wanted me to know that all of the medications and treatment that I was on would make it very difficult to do so not to beat myself up about it. I have not had luck on my own and continued to gain since that 2010 diagnosis and I am at the realization that I needed help and that this could help with so many symptoms I have picked up from breast cancer treatment. There is a stigma that these drugs are the easy way but there is no stigma attached to people taking other drugs to help them with conditions be it heart problems, blood pressure, etc.
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@cowgal Please do what you want and/or need to do to manage your health issues. Who cares what stigma is attached to these drugs. I don’t give a crap if it is the easy way out. I know what I did trying to keep my weight down while working full time, raising a family and taking care of ill parents. I was susceptible to being heavy and just couldn’t keep the weight off. I was so thankful I could afford it since I had no coverage for it. To this day, it was the best thing. I lost the 30 lbs and ended that year with my de novo diagnosis of stage 4 BC. Being at a safe weight when diagnosed helped my mental health so much.
I decided I will be going back on a maintenance dose of semaglutide. The article that the Mods posted regarding GLP1s possible impact on brain mets is helping convince me. I now have brain mets even tho I was told that rarely happens with my type of BC. Well, it happened and if there is even a tiny chance semaglutide may help me live longer, I am taking it. Plus, the med I am now on Truqap tends to raise sugar levels, in fact some folks get diabetes from this drug. So, another potential benefit!
My MO cannot prescribe it since it is not ‘protocol’ so I will pay out of pocket. So Thankful I can afford it.
You do what you need to do. Screw everyone else! Good luck!!
Stay cool 😎 xo juliana0 -
@eddiej No worries. I am not one that gives in to peer pressure. Obviously, at day 6 of my first shot, I do not have anything noticeable going on so it may be a while until people start asking and I don't care. My main concern with the medication is that I can tolerate any side effects, it helps me get the weight off and I get some of the other positive benefits from it. My MO originally brought up glp 1s to me and said he would support it but that I would need to have it prescribed through my primary care doctor so mine is prescribed by my primary care doctor. I know what you are saying about "protocol" and it appears that as more and more positive benefits from them are emerging, they are doing scientific studies on some of them. If verified by these studies, it should allow doctors to be able to prescribe them for some of these currently off label benefits.
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@cowgal How are you doing with this? I am about to order a microdose of Weygovy and curious how you are feeling 2 weeks in. I am on Verzenio / anastrozole and Xgeva. I had radiation to my cervical spine (where my mets were) and it caused me to lose a lot of weight due to not eating much….now that I am finally healed of all the ulcers etc (almost 3 years later!) the weight came back with a vengence and very quickly. I am cravinf carbs and sugar all the time. I am walking 3-5 miles a day and I can't keep it off. I am really hoping this will help and of course lower inflamation etc. I am a little worried about the GI effects as I already have daily bouts of diarrhea from Verzenio so thinking a little constipation may balance everything haha!
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@iacmelis11 - I am actually 3 weeks in and took my 4th shot last night. I am on Ibrance and Faslodex. I had been on XGEVA until early December 2025 when I was diagnosed with ONJ from it and had to stop. I had a little bit of nausea the first week and I did take a zofran one time at the the beginning. The other times I dealt with it was less and I just nibbled on a gluten free graham cracker and it calmed it down. I have not had nausea lately and I assume that it is because my system is getting adjusted to it and also that I have learned a few things to not aggravate it. For one, I like Diet Dr. Pepper and drank it during the work week. The carbonation was upsetting my stomach and I read that because Wegovy slows your digestion that carbonation will build in there. I stopped drinking it and things are much better. Weightloss-wise, I have lost 9.4 pounds in 3 weeks.
I have had a little bit of a problem with constipation but took some Senna and I have been slightly loose at times but not bad and mostly doing well with that aspect of the drug.
I learned a few things before starting and a few things along the way that are helpful. Drink plenty of water. This is vital to protect your kidneys. Get plenty of protein so that you can try to maintain and build your percentage of muscle. Get plenty of fiber. I invested in a body composition scale after reading about it in a book so that besides the number on the scale, I can monitor my muscle mass and some other information that should be helpful knowledge. Time your injections so that it makes sense for you. I have been taking my shots on Sunday evenings so that my tiredness from them doesn't happen on the weekend. I am always tired from my cancer drugs and felt like I needed to get things accomplished on the weekends that would not get done if I was lower in energy than I already am. Also, sleeping right after the shot might be beneficial so that I am sleeping through the worst part of the new shot.
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