Had two Mri today one with and one without contrast. Not good. 3 months ago I only had a hot spot on my T12 and now it has grown to 0.8cm. And now I also have several lesions in my spine. I have to talk to my oncologist now about my radiation, hopefully it’s not off the table. I’ve been on Ibrance for three months and guess it’s not working. Pretty upset to say the least. I’m to have a mammogram and pet scan in two weeks but now I feel like why bother?
Sharon
Hi Sharon. Please keep us informed especially after your PET scan. Have you spoken to your dr about your MRI. ?
Not yet the results were on my hospital app. The tests were done at 1.00 yesterday afternoon and came to me after the office closed. It’s always a waiting game. 
Hi Sharon, I have had my medication changed twice, finally this one is working. I had several lesions on my spine and T-12 was a big one. The lesions are getting smaller. Don’t lose hope, remember our cancers are not curable but treatable!! I just had an MRI of just my liver, thankfully it was just benign cysts. Someone told my son, who related to me: “Cancer is a full time job”. It sure is!! I blog and track it all. It helps, to see the progression or not of each drug!!
Thank you, I guess I need to start liking as each day above the ground is a blessing. I have more support than I could ask for and that is a blessing in itself!
Don’t lose hope! There are many drugs that might help you. You just need to find the right one. My entire skeleton is riddled with lesions, but it’s been 7 years now and only changed medicine once. My first oncologist said anytime there is a breast, you should have a mammogram. I suppose it’s true since there are different types of breast cancer. I had two tumors to start with, one lobular and one ductal. Was it coincidental they both showed up about the same time? I hope you have many more years!
We've got something in common. Extensive bone mets and I've lived with MBC for 6 years now. I also am on my 2nd line of treatment-- Verzenio and Faslodex. I like that you said riddled, like riddled with bullets!
I am on the same thing. 50 mg. of verzenio twice per day and falsodex injections. I am going into my fifth year. I was just told last week after my CT scan it is now in my liver. I do not worry. I am not feeling pain but I am given 240 10 mg. of oxycodone and now using the 50 mg. fentanyl patch. But have a telephone consult with my palliative cancer doctor (or my pain doc as I refer to her). These fentanyl pain patches are useless. Two weeks on the 50 mg. pain patch (you change them ever 72 hours) and I feel no real relief.
I'm sorry to hear about your progression. Will your meds be changed?
No. She had told me several months ago "that regardless of progression, my treatment would not change." So then when I had my CT scan in August 2021, they saw spots in my liver, but could not say for sure if they were breast cancer and could tell more by my next CT scan (I had been having them every three months). So what was the point if my onco is telling me that my treatment would remain the same bc I was out of options. I then cancelled my November 2021 CT scan and emailed my onco that I felt there was no point in knowing whether or NOT it had progressed if there was not going to be any change in treatment. She said she understood and was glad I let her know that I cancelled. (In my head, the minute they saw dots, I knew it was the b. cancer).
So then I had a scan two weeks ago (so it was 6 months from my last ct scan in August). They were new lesions on the lungs and spine (where I already had it) but now it was in my liver. My onco said it was worrisome.
Then she asked me to do genetic testing. I was like I am not coming back to cancer center for that. She said it just required blood work that I could have that day so I said fine and what was the purpose of this. She said maybe after genetic testing, they might be able to find a different treatment plan. I think its alot of bull. From what I googled this is only useful in beginning. I am now in my fifth year. I think they just wanted it for research purposes. I really could care less.
I was more worried about my spine bc that is where I feel pain. But she kind of dismissed the new lesions on my lungs and spine and was more interested in the liver, but nothing has changed. Quite frankly, I do not care for her much anymore but I am five years into this, plus I have the best pain doctor who is NOT afraid to prescribe me pain meds so that I do not suffer.
I was trying to find out what does a stage iv bc woman usually die from? I mean if its in my lungs, spine and now my liver, where does it go next.
I cannot seem to google and find out anything. but I am NOT willing to do anything extreme anyway as she knows. I just wonder where it can go next?
Any sites. I used to be on more here more often in the beginning but I actually found it a bit more depressing for me, so I stayed off and once in a while jump back on.
I do not keep records, I do not keep charts, I never read any books on cancer, I eat what I want when I want it, except now that I am on opiod medication, I eat alot of pears and lettuce bc the obvious constipation. I never get worried before a scan. I just take things day by day. What I do not understand is how long do I have left. Where else can it spread? (Sorry for the long reply.) I live, alone, never married, no children and no family at all (not that I do not speak to them) but some of us have no family so I tend to go overboard with emails and such LOL
It sounds like you're living your life how you want to, regardless of the cancer. You said you have pain in your spine where you have lesions. Has anyone suggested some focused radiation to help with the pain?
Have you considered a second opinion to have fresh eyes look at your history and the current scans? There may be other options to slow the progression. I get it if you are done with treatment though. It's a hard life.
Hi, that's v disappointing but don't give up hope. My Ibrance/faslodex just stopped working too and I have tumour increase in spine and hip but have started a different drug and here's hoping for both of us 😊
Hi What drug did you start?I am on my fifth line of treatment since 2019. I got liver in addition to bones I am very anxious. Hope Xeloda I am at now is working. I have a scan next week and am shaking
Best,
Marina
Marina, I am the same way at scan times. I pray for good results for you.
Hi Mariootsi,Thank you so much. Good luck. I am shaking
Marina
I know. Try some deep breathing.
Thanks again
Thank you so much for your support and suggestions
Hi Marina, I was originally going to change to xeloda but my onc decided to have a try at a different aromatase inhibitor (letrozole) to the one I had before Faslodex. I should know in 3 or 4 months if its helping or if I swap to xeloda. It is very scary waiting for scans and wondering what will happen and when huh? I hope you get some nice distraction and relaxation in the meantime. Let us know how you feel on xeloda x Pamela
Sharon have you not had radiotherapy to area affected yet?
Hi Sharon,
I'm not an oncologist, but I think it may be too early to decide Ibrance is not working.
It seems your MRIs told you about your new spinal lesions. Why do you now need a mammogram and a PET too? If there were any more areas of concern, wouldn't they have been picked up on the MRI's???
I had an MRI last spring to read the extent of my liver mets. Here, in Saskatchewan, MRI's are reserved for detailed readings. Otherwise, tri-monthly CT scans are used to check on the growth of mets, including those in the skeleton, chest and pelvis.
I'm glad that you have lots of support! Do keep in mind that those of us with extensive mets in many areas have not given up, and we seem to still manage to live our lives fairly happily.
Be good to, and for, yourself,
Hugs,
Cindy
Please don’t say “why bother”. There are plenty of reasons. I’ve been in your position and know how scary it is. Are you with Kaiser by chance? I am and also waiting for my oncologist to order more scans to see if what an MRI indicated about possible metastasis to T11 is true.
Let’s be strong together and fight this whatever happens. Sending big hugs and hope. 🙏🏻❤️
Hi Sharon. I’m 53 and just been diagnosed with breast cancer and bone mets. No symptoms. Found incidentally when I hurt my back doing Pilates and put two discs out. My understanding is we can roll with this for decades and it’s just going to be up down up down. Apparently it’s becoming more common here in the uk and my brother in law (oncologist) said one of his colleagues is setting up a dedicated clinic for MBC (breast and bone mets specifically) because this group of people need long term treatment.
Thank you susiemarmite - I really needed this today… scan next week, and I’ve been googling for some light… none found…. Until your post x
2nd year into MBC, switched to second line treatment last year, so frightened of changes to my protocol that will result in me ‘not being me’! Thanks for the positive information….BTW - I love marmite
Please keep us updated on the clinic and research for us.
Just adding my two cents worth. Don't give up hope. You are right to question whether Ibrance is working so soon but it seems with the progression, it is not. I am 81 years old and have had Cancer since 2010. Not diagnosed until 2013. .Ibrance didn't work for me either. So onward and upward. You are the captain of your own ship.
Cheers, June S.
Hi June. What medication are you on now? I was diagnosed in 2019 and am on my fifth line of treatment Xeloda. I am also very anxious My scan is next week. I had bones everywhere but last scan showed liver. My oncologist says that it’s not curable but treatable. Many new drugs are in trials. Let’s hope!
Best,
Marina.
Hi Marina: I am on Verzenio and Tamoxifen. Have been since November 31st. Scan this week also. The only thing left is IV. Not sure I want to go for that. You have lots of choices.
Cheers, June S.
Hi June,Thank you very much. I believe you can go on drugs you had been before. I hate thinking about IV but if we would like to live until new drugs come out. I have faith in ErSo but it’s only on preclinical stage.
Best,
Marina
My onocologyst will usually wait for 3 mths, another scan to say for sure meds aren't working. I just came off Ibrance. My bones are stable, it's my liver. I know Pfizer has a program to help pay for meds. I am not 100% how it works in the US. But the did pay my co pay for a couple of months until my insurance started.
Keep positive and good spirts. Breast cancer is a bumpy ride.
Deb ❤🙏
Hi Deb. What meds are you at now. I have the same situation. I had bones only but now it’s also liver. I am very anxious. I am on Xeloda. I have my scan next week. Was diagnosed in 2019. Hope for new drugs and long term treatment or cure. Best,
Marina
Hi Marina
It sure is a ride this mbc!! Upon diagnosis March of last year it was 2 spots on my T3 and my hip. Also on my liver. It's the liver that gets tricky. I started zometa injections. First one was December. Will have another one in March. I have been on letrozole since the beginning, my first series of fulvestrant this month. I get my first scan to see how it's going in April. I have an amazing team of Dr's and nurses. In our hospital there are meetings weekly on all cancer patients. Kinda of wonderful having an army ❤. I never went the chemo when first diagnosed. They went hormone therapy. As my onocologyst says she keeps the chemo in her back pocket.
I keep positive that fulvestrant/letrozol is my treatment and will keep me stable for years.
I keep positive as they are just soooo close to finding a cure. I know so many started with breast cancer and for years life was awesome beating it. Then the disheartening MBC is diagnosed.
We just need to keep strong, have faith and hope this will be the next cancer cured!!!
All the best ❤🙏
Deb
Hi Deb,Thank you so much for your positivity. I hope the medical community will find a cure soon. It’s very difficult to live in fear. I have lots of anxiety. Next week is my Pet ct and I am shaking.
Good luck to you and spread your positivity
Marina
A friend once told me...why does our brain immediately go to what could go wrong. So...they said switch your brain to think the best case scenario instead. That is sooo hard to do. But I try very hard to do that with each scan I go to.
I have my days where all of a sudden I have anxiety, comes out of nowhere. I work at bringing that around to have faith and trust my path.
Hugs ❤🙏
Deb
I'm sorry for the results of your MRI but please do not give up hope. There are other treatments out there if you need to chance. Also, perhaps the lesions were there before but too small to be seen. Had you done MRI's before or other types of scans? When I first went on Ibrance the doctors thought there was only 1 lesion and radiated it but 3 months into treatment they found another one. I was very disappointed too. They determined it had been there before and was not found on scans. I had radiation to that lesion, too, and have remained on Ibrance and Letrozole, now going on a year and half. The radiation was SBRT, a high dose treatment that was done for 5 sessions for each lesion, each session about 15 minutes. It was painless and seems to have worked so far. My doctor has told me MBC is a chronic disease and will require a lifetime of treatment but that there are many options. There are many women on this site who have been dealing with MBC for several years and are still fighting and trying to stay positive. I hope to be one of them and hope you will be, too. Maybe have a discussion with your doctor about the need for both a mammogram and a PET scan. In the meantime, please hang in there. Sending you hugs.
My bone Mets were found last October and I started Ibrance and Arimidex. My 3 month scans showed an increase in bone Mets so I just swapped to Piqray and Faslodex. It was a hard choice for my Oncologist. During the conversation with me, she went from “let’s give Ibrance a chance until your next scans” to “there is a great drug and you have the right mutations to make it an option”. I decided to make the change. Point is, there are so many options. Until they are exhausted, it’s worth the bother.
Good luck with Piqray. I have that mutation also and Piqray directly targets it.
Hi Sharon. My oncologist says that mbc is a chronic disease. My life has changed drastically since my diagnosis in 2019. I had bones only but the last Pet ct showed liver. I am on the fifth line of treatment. I see women on this site who live many years changing treatments. One woman I know is battling mbc for 20 years, one for 30. We all hope for more effective drugs and hopefully a cure. I am a member of ErSO group on Facebook. It is still in preclinical trial but we hope for its curative effects.
I have anxieties all the time but try to manage. No one knows what is going to be tomorrow.
My scan is next week and I am so nervous but hope that the treatment works.
Best,
Marina
Lots of good advice above. Mine is to stay calm. Did you have a bone scan yet? A baseline. I had that that the start so they can map future mets against that. To see size comps, etc.
Sorry to hear your news. Good luck with your pet scan. I'm sure your onc will have a plan. So many options. Totally understand how you feel right now. Hopefully your onc can reassure you. Please let us know.
Sister/warrior: I do pray GOD will provide the right treatments to stabilize/kill the disease in your body. Please don't give up hope 
. There are still so many more treatments available that can help you.😇🙏
I'm so sorry to hear about your test results! I have extensive bone mets, some which fractured my spine and led to my diagnosis - it was so bad that I couldn't move my legs. Trust me, you don't want to get to that point, so make sure you stay on top of your care now! Make sure to ask about xgeva injections (xgeva is given as shots, while zometa/zoledronic acid is an infusion), and make sure to do appropriate follow up tests. My onc suggests calcium + vit D3 supplements as well for bone health. I don't bother with mammograms, but the PET scan gives a correlate to the MRIs. If nothing's glowing in the PET scan, then the spot on the MRI could be unrelated to the cancer. Ask your doctors to show you the scans too if you think that will help with your peace of mind. Don't give up!!!!!
Hello Sharon! Was this your first MRI since MBC diagnosis? I am asking as initially my oncologist considered me oligometastatic (single bone met on sternum). However the bone scan showed some hot spots and CT showed nothing so oncologist decided to give me an MRI based on hot spots. This is when the MRI picked up other bone mets on spine, ribs, sternum . The MRI also noted the the single met on my sternum was bigger but CT scan still noted that the size did not change. My oncologist explained that this is the reason they do not use MRI to monitor bone mets as it picks up things that like the little seeds in a ripe banana, etc. Please TRY not to worry too much until you speak to your oncologist.
I have breast cancer lesions in my spine for over two years now. That is when I had my first meeting with pain. (It was already in my lungs). After continually turning down radiation to my spine, I was then told I needed to have it bc it was getting too close to my spinal cord and if it got into my spinal cord, I could become paralyzed. That was all I needed to agree to the radiation.
I had it for only two weeks. It was more of an annoyance to me to have to go there every day. It shrunk one lesion enough so that it was not so close to the spinal cord so I guess it served it purpose.
Last week I found now that it has spread to my liver. I dont feel any different.
I only lasted about three months on Ibrance. Hated it. My week off I was so so sick I could not get out of bed. I am now on the lowest dose of Verizenio (first it was 150 mg. , then 100 mg. and I had stopped it myself bc of the uncontrollable diarrhea.)
So I went down to 50 mg. twice per day and no more problems with Verzenio. So do not give up bc there are other meds in line and here I am five years later but not sure what what it being in my liver means now.
This was my 2nd MRI both with and without contrast. My first was in December and only one hot spot on my T12. Seems there was confusion with my oncologist and the radiation oncologist, not til Feb was I told that the radiation oncologist said I refused radiation. When I really asked him if I could have radiation in my town 90 minutes away from Okc and he said yes. Never making a move on it. When I mentioned it to my oncologist she got right on it. Then the new Mri both with and without contrast in Feb showed 5 Mets, needless to say I am very upset. I was tattooed this week for radiation and no idea as to yet when it will begin in my town. I am very discouraged and my blood work in three months now shows no progress on my cancer numbers, they have stayed the same. Thanks for your concern, it’s all just a waiting game, til I die.
I refused to have it so my onco made the radiation doctor call me to tell me if it got any closer to my spinal cord, I would be paralyzed. So I agreed bc that scares me more than the cancer. I live alone, have went to every single apt. alone, even when I got diagnosed, I do not drive, have no family and none of my friends live in Brooklyn. I am permitted to have an aide and I said no. I do not want a stranger helping me. It was fine. It was more of a bother to me to go there, get undressed, put clothes in locker, then lay on the table and have them move me around (with the mask on) until they left the room. The radiation itself was quick. Took me longer to get undressed in the robe LOL.....
My pain doctor upped my pain medication bc she said my spine would be inflamed but I never noticed any different. But the lesion closest to the spinal cord shrunk so that is the good news although I have new ones (T 12 and something else). Quite frankly, I consider this more of a nuisance. I do not get upset, or worried, the ONLY thing is that I do not want to have any pain and my pain doctor is good about that.
But I do eat what I want whenever I want. I am not going into my fifth year. But it seems like those with stage iv live much longer these days.
I am blessed that I have dual coverage of both Medicare and Medicaid so I do not pay a penny towards medical plus I get free car service to and from all doctor's appointments, just not cancer related ones so I know I am blessed to have dual coverage. I had to go on medicare after two years of being on SSDI. Luckily, I worked since I was 19 and made decent money in NY so bc I have no medical bills of any kind, I am good.
They had social workers and a lawyer that comes once a week that I joined a pool trust fund which Medicaid approves since I get SSDI and a non-profit takes a certain amount of my SSDI money and they pay my rent and other bills I can to them so Medicaid even pays My medicare every month. So I am doing well on that end.
I just am confused on what actually causes the death from someone with stage iv. I am now in my fifth year and I thought I would not be here years ago.
hi Sharon. this MBC sucks in so many ways. the 'not knowing' and 'the wait game' is so difficult. and the wheels never turn quick enough when we are waiting for test and results..can cause a lot of anxiety. yes, we can live many, many years with mbc and that is definitely progress. but it is not a normal way to live. so we should pat ourselves on the back for being truly amazing in that we live our lives with grace, despite having our mortality thrown in our face. we are so strong to be able to do that. outsiders don't get it, and that is why this board is so important to us. we are all in that same boat...so to speak. of course everyone dies....and yes, we could get hit by a bus. but let's face it, it is different when diagnosed!!!....the reality that we face that even our friends and family cannot really fully understand....or most can't. these are my opinions...i know i keep saying 'we' but i feel like i am speaking for some of the others as well. but what i am leading up to is that this is NOT easy and sometimes can completely overwhelm.
you are newly diagnosed. it has only been three months. when i was first diagnosed with MBC in 2017....i thought i was going to die immediately. i mean, stage IV.....isn't that an immediate death sentence? i got my affairs in order and had my will updated. and over time, i realized i was still here. and 4 and 1/2 years later i am still here!
maybe i am speaking out of line, and i mean no disrespect, but i believe you are still in shock and emotionally depressed or just way overwhelmed....with good reason i might add. i myself, suffer from depression (on and off) and it can suck the life out of you way faster than the cancer. even people who are not inclined to mental health issues can experience 'situational depression'. and i would call MBC a f###ing 'situation'. this site is a great start. and the passing of time. and light exercise if you are able...'move a muscle, move a thought'! i personally see a therapist and i know some others on here do as well. maybe that would be helpful. i am not a professional (well..an RN but not licensed to diagnose) so please take with a grain of salt. and pls forgive me if i have offended you in any way. but my intentions are sincere....i only want to help.
Breath Deep.....
sending hug....
carole xo
That is the best advice I have gotten! Thank you so much. My best friend has said so many crude and hurtful things since my diagnosis I have pushed her out of my life. She has become toxic in her words and it makes it worse. She is a hypochondriac and makes me feel like my cancer is nothing. She even lately had the audacity to say a pet scan for me was a waste of money to be paid by Medicare and I’m to the point I don’t read her texts, so now she’s messages me on Facebook messenger. I don’t read those either! Thanks for the pick me up! Sharon
Hugs!!!
hi again Sharon. happy to hear my reply was helpful! others here have helped me a lot and nice to pay it forward.as for your best friend....sorry to hear that. you have no need for toxic relationships! i too have lost some close friends. so were they really friends? i thought so too but this disease has a way of weeding them out.
keep us posted!
hugs...
carole xo
I too had spinal mets develop and was freaked out by it, but when I was put on Enhertu, they stopped developing. And so did the even more terrifying tiny tumors in my brain. Before that, I got the computer-directed precision radiation beams to the brain tumors--low power beams that intersected inside each tumor and annihilated it. And did it without causing brain damage--so different from The Bad Old Days.
So it's not hopeless when even very scary mets show up--science is progressing and treatments are not just more effective, they're also less damaging to the tissue around the spots. Hang in there.
I had to be switched to Xeloda recently and I've sincerely mourned the loss of Enhertu, but I'm up for giving the cape a fair try. Plus, there's a small chance that I'll respond to steroid treatment for a month, which might allow me to switch back to Enhertu. Fingers crossed.
Radiation is one of the really good tools to manage this terrible chronic illness we have. I'm not being cavalier about the impact of radiation on the human boy...but it's preferable to the the pain and progression that could happen without it. Three years ago I was limping and on crutches but after 10 doses of radiation I was on the golf course and walking normally.
today radiation has come a long way...there is also something called SBRT which is a highly targeted form of radiation (it comes with a price tag and not always covered by insurance) but it can do wonders to extend your quality of life.
Hope you get some good resolution to your situation...we are lucky to be 71 and still upright and taking nourishment. Best wishes!
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