Hi! My name is Kim, I’m 43 and I have bone only MBC for 2 years now hormone positive HER2 negative and I’m on Ibrance 125 and letrozole 2.5. I used to find so much comfort in reading posts from others going through this with me sharing their treatments and feelings but over the last 9 months or so I just CANNOT bring myself to find comfort in reading some of these posts on the Facebook groups. I completely understand that everyone has their own treatment plan and opinions that work for them but there are SO MANY PEOPLE pushing certain product to make money at our expense and I literally lose sleep over it. And this is coming from someone who spent years now reading trials and adding certain holistics to their treatment plan. I spent a thousands on naturopaths because I do believe that nature is the best pharmacy when used in conjunction with our trained professionals prescribed meds. Cancer treatment has come SO FAR, but I see so many groups pushing people to stop their meds and buy all of this nature only stuff. I have every book, and add many many things to my daily routine but as 98% estrogen positive I KNOW to stay away from anything with soy because it mimics estrogen. Please, especially the newbies, do full research before adding anything you read off of Facebook groups. Anyway, THANKS FOR LISTENING AND ALWAYS being there sharing your stories that pull me up on my dark days!
SIDE NOTE I forgot to mention : from our friend mariootsi
"I think it's important for us to always speak to our oncs or pharmacists before adding anything to our treatments. Many "natural" supplements interfere with our drug absorption, interact badly or promote cancer growth I've done so much research it's mind boggling" Thank you Mariootsi!
Also, after 6 months on Ibrance on Letrozole I had No Evidence od Active Disease and still going strong since 3/21
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KimberlyB40
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I completely agree with you ! There is a lot of misinformation out there about cancer, and MBC specifically :/ happy to hear you are doing well on treatment.
yes, it’s challenging to wade through it all. I was dx last year and this last 1 1/2 has been full of researching and reading “all of the things!” It’s hard to know what to think, believe, follow and do! I have a similar dx—bone only Mets, ER+ and I’m on Ibrance and letrozole 16 months now.
Curious, What else do you add or do? I try to add the things which make sense: better nutrition, juicing, anti-inflammatory foods, and do take calcium, magnesium, D3 and melatonin. And of course more exercise. Those things most people can agree on. I spend a lot of time outdoors gardening and working in the yard and even, recently, decided to add chickens! I think the biggest thing is KEEP on LIVING! Every day, get up and keep going. 🌸
I try and keep it pretty simple. I have a vegan meal replacement like the shakes for added nutrients. I take Intramax liquid multivitamin, Livatrex a few nights a week before bed, liquid vitamin C 2500mg (before I not metabolically active I did IV infusion high dose vitamin c) and 3 times a week to alkalinity my body I did a steaming 20 minute detox bath with Epson salt baking soda and hydrogen peroxide. I also bought 1 of those blow up hot toys and did a dead sea salt hot tub at 104 degrees 2 times a week for less acidity in the body. My Mets are almost every bone in my body from next to both knees every vertebrae so I had consulted with a Dr in Mexico. Mexico will be my last line I believe, but they do this heat ablation thing using 104 degrees to kill the cancer - I obviously went alittle over board but it made me feel better !
Hi Kim. Thanks for posting this. I agree - there's so much misinformation out there it is easy to get lost in it - especially on the hopeless days when I'm looking for a guaranteed cure (which we don't have YET). I've seen so many people buy the book, buy the drink mix, buy whatever the one person is selling that seemed to "cure" them and they go off medical treatment.
I'm over six years into the journey (first line of treatment Ibrance/letrozole) and the first year I was deep into researching diets, regimens, supplements, etc. But after two years it was too exhausting to keep up with so, here I am living a normal life (mostly) with none of the naturopath/holistic treatments. I take certain supplements (all stuff you'll find on the shelf at Target). That's working for me, but every person has to figure out what works best for them. Health regimens can keep the body strong in order to weather the medications, but they don't cure cancer. Taking medications not meant for cancer can cause damage to otherwise unaffected organs. I choose to keep the working parts at their optimum as long as possible.
We each have to be our own advocate and take charge of our treatment including research. I wish every oncologist would stress that when meeting with their patients.
I hope you can make some sense out of this ramble! LOL My point is, I'm with you, sister.
I'm so happy you are still on your first line of treatment for 6 years, that is awesome. I am a little over 2 1/2 years on Ibrance and Letrozole and doing well so far. I have read a lot of articles and books and listened to podcasts, etc. about alternative treatments, off label meds and supplements, plant based diets and other things like that. I have added more plant based foods into my diet, but don't feel like I can cut out animal proteins as it seems like then I would have to add a lot of other supplements to take the place of what I would be missing. I take a multi vitamin and a raw calcium/vitamin D supplement but no other supplements as I am afraid if they would interact with the meds. I try to eat healthy, I exercise and gets sunshine and try to stay positive. So far these things are working. I like to read about what others on this site are trying and also believe if it is working for them, that's okay. I agree that we have to be our own advocates and I think it is okay to question our oncologists about things we might want to try to get their opinions.
I think it's important for us to always speak to our oncs or pharmacists before adding anything to our treatments. Many "natural" supplements interfere with our drug absorption, interact badly or promote cancer growth I've done so much research it's mind boggling!
I agree you should always speak to your oncologist before taking any supplements, especially herbs. I was unaware I had cancer and was diagnosed De Novo MBC in 2022, estrogen positive, mets to lungs, liver, and spine. I strongly belive I unwittingly promoted my cancer growth with some of the herbs and supplements I was taking prior to diagnosis in order to prevent cancer!!! Best wishes.
I currently find myself in a scary place " the waiting" as we tic off boxes to eliminate what is wrong with me!! Have stopped all meds for a few days and fasted drinking only water and my body is trying to get rid of Stuff! I had been using several vitamin minerals etc, then many Drs began prescribing all kinds of drug changes and somewhere in there I had a Very Covid-like syndrome that I thought was gone but its now back too! Listen to your bodies we are All different!
On a light note, I now say things like "I was healthier when I ate Dirt often". In fact I was a Dirt early Gourmet. Where I grew up in the country, we had only red clay and I always won in dirt eating contests, when we would go somewhere if the dirt had a different texture or color I would taste it! My Mother would just ask me what it tasted like? I only remember my Dad cautioning me Not to eat where the cows or horses had been. Then hormones happened and eating dirt was not the way a lady should present herself, its been a wild ride!!!🤣🤣🤣
100% with you on this!!! Shame on all those people out there trying to make A BUCK at the expense of people who are sick and just want to be cured and go on with their lives!!!!!!!!!
I just follow what my oncologist and other specialists say and I feel they have been trained in this and that is what I go with. I also have mbc in my bones only and have been on ibrance and letrozole and it has kept me stable 4 years so far. I find this site very helpful in knowing that others are dealing with mbc and how they cope with it. All the best to you. Theresa
Thank you for sharing!! March was 2 years for me and I keep researching drug resistance takes w Ibrance and what I can do to prevent it. Do you take any supplements?
Thanks for writing this for us! I'm 19 years into this--denovo MLBC, bone mets only, E+P+her2neu- at di/agnosis. Back when I was first diagnosed (2004), the targeted drugs like Ibrance weren't aro-++und yet. I got a month under 5 years from Letrozole and then over 9 years from Faslodex. On bone meds, too, first Zometa and then Xgeva. Got about 3 1/2 years from Exemestane. Sometime, maybe 6-8 years ago, the cancer became P -, which didn't seem to impact anything. Then earlier this year, it became triple negative. I've been on Xeloda for about 3 months. First scans showed good results, expect onc will order more scans next month. I was on Ibrance briefly in 2016, along with the Faslodex and Xgeva, but it damaged my lungs. Besides bones first place cancer cells showed up was inside my left ureter (tube between kidney and bladder). That kidney has a little damage, but not enough to be a problem. I now have a stent in that ureter which has to be changed every 3 months, a five to ten minute procedure that requires anesthesia. After the last stent exchange, the urologist told me that I may be able to not have stents at all soon. My sense of humor has helped me cope, alot. Good support from family, friends and our dogs helps, too. Our cats aren't as supportive but I love having a kitty on my lap. Right after diagnosis, I went to Barnes and Noble, found the cancer section, and looked at every book on breast cancer! One of my longest visits to a book store ever, LOL! I bought the 3 books that most "spoke to me." Susan Love's was one of them. I also attended several BC and MBC conferences. And after several months of treatment, the cancer center held a weekend bc retreat and I met other women with MBC and learned about a support group for those of us with MBC, and joined that, one of the best things I've done form myself since getting this diagnosis! There were usually 6-7 of us at every meeting, but the social worker who referred women to our group left and after several years, the group died off, literally as I became the only one left! I've visited enough people in the hospital within the last days, hours, and even at their deaths to not be afraid of what will happen to me when I am dying! Oncs and hospice and hospital staff are great at managing pain! Thankfully! Anyway, learning all I can and meeting otjhers with this blasted cancer have really helped me cope. I gotta go--one of our cats had a recent procedure for a swollen ear and needs tending to, not my favorite interaction with our pets! Sending love and hugs, Pam
Hi PJBinMI!!! You were 1 of my 1st people I spoke to when I 1st found out I went MBC and if it wasn't for you reaching out, and this group, I don't know WHAT I would've done. Look at me posting opinions now 🤣
I agree. Once a person gets into higher levels of mets it is probably hopeless to expect to cure it with vitamins. They will all help and there should be emphasis on getting the body and metabolism into as good shape as possible, some chemical treatment are necessary. The pharmacologists have now admitted that cancer is mostly incurable and are working on treatments that keep it at bay and provide longer, more comfortable life. But they do all have side effects so it becomes a quest to find the one with the least or most bearable effects. So do everything you can to support your body but don't expect a cure with vitamins.
This is OceanArtist's husband. I'm sad to say she passed away last month. The docs were not sure of cause of death so "breast cancer" was put on the death certificate as an easy out. My wife and I experienced nothing but frustration with numerous doctors who did practically nothing to get to the bottom of her life-threatening illness. She was on Letrozole and Ibrance for very small cancerous nodules in her left lung which were stable and in remission. She passed from shortness of breath which was not caused by the the nodules in her left lung according to her oncologist. I do think the Letrozole and Ibrance were helping with the small cancerous nodules in her lung.
I haven't read notes from you in the past but want to thank you for letting us know of Ocean Artist's passing. So often, we do not learn of the passing of one of Us but have to assume it because months/years pass with no response from them. I send my good wishes and prayers to you and hope that you can eventually heal.
Oh, I'm so sorry! Especially for your wife's death, but also the frustrations both of you experienced with her docs and treatment. Would it be helpful for you if you had an appt wiith her oncologist? to talk about howm things went and your frustrations.
Ibrance can cause lung issues, I developed something called Interstitial Lung Disease (ILD) after just a few rounds of Ibrance. I was taken off it right away but the ILD has not gone away in the 7 years since it cropped up. The one good thing was that I was referred to a wonderful pulmonologist!
I hear you on every level with natural vs Conventional medicine. Sometimes it is a risk to stop conventional treatments when you are Metastatic, or for that matter, any form of cancer. I believe in natural medicine, but I also believe that sometimes we need a combination of both natural and conventional in order to help us achieve our goal for NEDS. I have seen people try to sell products and that is wrong.
Revisiting this site after a breakout to my dear partners MBC . Stellar result with Palbocyclib, Arimadex for nearly 2 years. Side effects as we know and a few suspensions due covid etc. Liver spot and spine lesions detected. Waiting for onc appointment.
Agree give charlatans a miss but couldn’t help but notice comment re soy. Asked medico and would have to consume impossible amount to be a concern. Dairy however, bovine baby formula, lactose we just avoid. In terms of holistic complementary is ok, alternative is not in my humble opinion.
I rate Dr Abrams, a US integrative Oncologist highly.
If anyone could be so kind as to advise what was prescribed after initial treatment of 100mg Palbocyclib, Arimadex had run its course?
Fulvestrant is a drug I have heard mentioned here.
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High cholesterol while on Ibrance and Letrozole.
Upcoming mastectomy and genomics
Recently diagnosed after 11 years
Hi - I'm new here. Diagnosed with Lobular MBC -- mets to abdomen
Discontinuing Letrozole 
