Well, 4 months on Ibrance. Unfortunately it did not work for me. Ibrance was my first line defense for MBC. Prior was about 18 months of tamoxifen for stage 2. I’m 47. I was 44 w stage 2; 46 w MBC. The MBC was originally localized to my bones and scalp.
Results showed new spots on liver. Too small to biopsy; multiple spots. Showed a “mixed bag” on bones. Some new, some gone.
So now it’s affinitor and exastamene. And I’ll continue zolodex and xgeva.
So...I need positive stories and thoughts. If you’ve had spots to liver, please share. If you’ve had meds fail, please share. If you’re a long time survivor, tell me your story.
No pain, no sick feelings...and my original scan was going to be October. I requested it moved up after experiencing some bruised feelings on ribs (which went away)
Gonna have my pity party today then brush it off and get back up.
🤗
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Snowcone16
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I was sorry to read that the Ibrance was not effective for you. But it sounds as if you are headlong into a new med protocol. Your story gives ME hope--just knowing that there are alternatives when one treatment is not successful.
I will be praying for your success on these new meds and pray that your body adjusts more readily to this protocol. Please know that ALL OF US pray regularly for our community of sisters! God bless you! Linda XO
Thank you! Felt the burden lifted when I returned to work today after a day of digesting the news. Feeling more positive today. ❤️
Hi Snowcone. I'm Jana. I was stage 1 in 2007...made it almost 10 years before MBC to bones in October of 2016. I was on Ibrance/Letrozole until my scan in June of this year when they found two very small spots on my liver and scalp mets as well. At that point they moved me to Affinitor/Examestane...10 mg, max dose. After only a few weeks, my numbers dropped so low they were going to reduce the dose, but at that time, I had a root canal fail so they took me off altogether so they could put me on an antibiotic to combat any possible infection from the tooth. Fast forward another few weeks and they have me start the Affinitor again, this time at 7.5 milgrams. I then underwent a new benchmark scan, having just made the decision to move my treatment to CTCA Goodyear, AZ, which showed that the two liver spots had grown ever so slightly yet again. So...off the Affinitor and Exemestane...on to Paclitaxel, chemo by infusion, of which I have now had two cycles. It's certainly not been easy, but the scalp Mets are all but gone, and I've had very minimal side effects from it. My biggest complaint right now is from having to get a port put in yesterday, as my veins have never been generous, but they became simply impossible for my entire team to find every time they had to give or receive.
Wishing you all the love and luck in the world as we continue our very similar battles.
Thank you. I lived in Gilbert, AZ. Just moved east July. I’ve never had chemo but did read a few posts from others w liver Mets they indicated chemo put them in remission 3 years. I also saw another that had a 5 year NED rub with fulvestrant.
I try to dig to find these good stories...sometimes the trail goes negative though. Allowing myself one last day of sulking. Then I will brush off and get back up. 🤗
I am new to having MBC and am on Xelota. My first scans are this week, after 3 months of starting the drug, and I am praying nothing has progressed, but who knows. All I can say is that my oncologist indicated she has many many options out there for me if the first drug is not doing the job so I am confident the same will apply to you. I have talked with the SHARE hotline people who have had long term results and it has been very encouraging to me. I believe they will find something that works for you.
I’ve heard good about xeloda. I’ve heard there are quite a few meds to pick from now. If this second one doesn’t work, I think she is also considering chemo through IV.
Love your attitude. Brush yourself and get back up!! There are so many medical options out there and we're all different. You'll find your perfect "cocktail."
remember - just bkz one thing did not work - doesn't mean no hope. they have lots to throw at cancer...just keep trying. i did ibrance for 2 months and it failed miserably, then a trial drug that was good for 8 months...now xeloda xeloda is my friend these days. i don't have liver mets. i am not a long term survivor yet but i sure plan to be. i was stage 1 5 years ago and surprise! mets a year ago on bladder, colon, under eye and bones...
let your doctor worry about the cancer - they went to med school. you worry about what you are going to do this week! think of it like whack a mole. pops up one place, they shut it down... it is just how it is going to be... but don't get down. just say "ok we are on to plan c"...
So sorry to hear this, Snowcone. I didn't have good luck with Ibrance and faslodex either; that was my first line of defense after metastasis diagnosis, and so they put me on paclitaxel. I'm in my third month of injections ,and we'll do a scan in September. I have liver mets, too (large enough that that's where they did the biopsy in October to find the metastasis)...and bone (innumerable, it said) and several lymph node. Glad to hear there's another option out there, should things go awry with my current treatment....keep your chin up, girl. There seem to be alot of combinations out there; I think it's just a matter of finding the ones that work for our individual cases. Everyone's different. Stay calm and keep your thoughts positive. We're gonna get this!
Ibrance didn't work for me either. Next my onc put me on the exact thing you are on but I got a second opinion. Now I'm on Zeloda and every three months I will get an infusion of Zometa. Haven't been on this treatment long enough for a scan and results but have heard great things for the friends on here. Don't be discouraged, you know what doesn't work, just finding what does and you will be on the right track...
Hey your beautiful, strong and level headed! You will be fine, as you know this chronic disease has it’s ups and downs. Next scan will be better, your going on good medicine. I had mets to liver and Doxil took care of it. My bones have become sclerotic. We both are basically newly diagnosed so we both have had that beginning what will and won’t work. Something will work and you will go on. Hey just 5 years ago there were hardly no new treatments, we can try something and if it doesn’t work we move on. Remember there are new meds coming, in the next year they will come out with a new and easier to take oral medicine. Hang in there and as the days pass you will get your mental strength back you have. I’m not telling you anything you don’t know, just trying to reassure you. Leslie
You’re right. I’m feeling more optimistic today. I was definitely devestated, bitter, angry yesterday. But it didn’t feel good to feel that way. So, I shook it off and here I am today!
Good for you girl! I knew you would rebound as I thought. You are a very strong young woman. I really think of you often when I start feeling down. I know you work full time and take care of a family, I admire you very much, as I’m not as strong as you. The ladies on this site amaze me everyday. You will do well with this disease because of the way you jump up and brush yourself off. I know your not the type to give up and that’s why you will take a step back but take 10 more ahead. I’m thinking of you. Oh your starting some good meds, I will bet by next scan your liver will be fine, mine was. Clair ❤️
Greeting: Sister/Warrior/ and, yesssssssss Overcomer. I pray God will provide a supplement/drug protocol that will stop your cancer in it's tracks permanently. Keep the faith . Remember who you are, the heir to Gods sovereign throne. XoXoXoXoXo
Sister/Warrior/Over-comers : Sometimes we get knocked down momentarily, but get up put on your boxing gloves, and fight to defeat cancer. With Lord/God on our side we are victors/over-comers. Cry momentarily, if you must, but, keep fighting ,praying, and praising God. XoXoXoXo
Thank you. I was so angry w God yesterday. Found myself coming to him and praying but then would stop and say “you’re not even listening, I’m done”. But, He helped me get back up and believe. ❤️
Omg, I've been on Ibrance for 3 months and going for a PET scan on the 20th. Of course I'm nervous, but what can we do but trust in a "higher power". And the master plan. We are all so vulnerable and don't know what tomorrow will bring. One thing is for sure WE HAVE TODAY and we need to enjoy it! No one has a guarantee on living! If you feel good, then go with it. I had a bad tired week because my white blood cells were low, but I'm looking forward to the life I have left to live! Please stay strong and leave it to the Good Lord to take care of you! Hang in there❤️
Hopefully Ibrance gives you long term success. I was starting to notice a pattern w fatigue and nausea w Ibrance. Fatigue hit me 5 days in. My cycle started Tuesday and it was nice to nap on the weekend! The nausea seemed to come after second week. It was only 2 days maybe.
If one drug doesn’t work then they will give us another. It’s trial and error, another bump in the road. Ugh it’s not easy living with uncertainty - I keep thinking I can control this cancer by doing everything “right” but shoot I buy organic, make carrot smoothies, gave up sugar, carbs, beef, etc etc etc!! But who knows if it’s working!! I am on my 4th round of Ibrance and Letrozole I see my onc Sept 17th - so I assume he will order another Pet/cat scan to compare with one from February. My BC spread to lymph node under arm then to hilar node in chest and some spots in lung. I asked him if there was one thing I could do to help myself what would it be? He replied exercise. Ugh it has been the hottest summer on record with 95 percent humidity, exercise? Really? When it cools down I’ll get back to walking the dogs 3 miles a day but until then I’ve been very tired and maybe a little depressed. I feel like my family is waiting for the other shoe to drop. Keep your chin up - I know this is hard - they will find the right meds just for you - new ones coming ! I’m thinking of you Snowcone❤️❤️❤️
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any experiences to share?
Importance of PET scans
