Stunned, scared, sad, but grateful and happy to be here!

[Fifilatour]

Hello everyone - I haven’t posted much, but wondering if I can get support, advice, experience. Me: 52yo. Mom of 21yo twins. I hit 10 years “clean” in Aug ‘21 post ER/PR+ IDC in 2011. Double mastectomy with DIEP reconstruction. Chemo and radiation. 7.5 years Tamoxifen then switched to Letrozole for 1.5 years. Almost done! Or so I thought. Then right after my ten years, in September’21 diagnosed with MBC (now just Er+) to liver and bones with some node involvement. Started Ibrance/Fulvestrant/Xgeva. First three month scans late Dec ‘21 showed amazing results. Everyone very happy. But started not feeling so great in Feb, including headaches. With six month scans last week, onc also ordered brain mri. The treatment has stopped working - liver tumors growing fast (bones are stable). Worse is that the brain mri found about 14 lesions (11 are 1mm and 3 are 4.5mm), so very small. Starting Cyber Knife next week and onc has not yet decided on next treatment (Xeloda? Morpheus trial? Etc?). I adjusted fairly okay to the mbc diagnosis in September and decided to approach it with hope and acceptance - lots of you have been doing well for years on Ibrance and I’ve found this board to be so inspiring and informative. But this recent news has really disheartened me. Having a hard time keeping my highcopperosity up (as my Grandpa used to say). Having a harder time thinking it is realistic that I might get more than a couple of years. Would love to hear I’m wrong. It is such a shame and so stunning that we all have to deal with this disease. I know I’m not alone and regardless of this stupid cancer I am still so very lucky anf grateful. But I’d love some glimmer of hope that I have a possibility of maybe just maybe having a little more time than a couple of years. Thank you for reading this. As you can see - having a bit of a tough time today. Xoxoxox Liz Pocock, San Francsico

[Ycats277]

I’m sorry 😢, so scary . I wanted to respond I do not have brain Mets or liver Mets. Mine is in my bones and has been there now metastasize 5 years ago . I’m still on my first line of medication for five years now, Verzenio 100 mg 2x daily , Faslodex injection monthly along with Xgeva injection monthly. It took five years but five weeks ago my pet scan revealed that I am in remission ( NED ) first time . In six months I can go back and that could be different but to hear those words was wonderful. I am wishing you much luck and I’m also pleading with you to really reach out to the people on this site, you will meet many that have exactly what you have. Some are willing to talk and share and some aren’t. You can ask me anything I’m an open book. 🌹

[Fifilatour in reply to Ycats277]

Thank you! And congrats on your good results. That’s terrific!

[Hidden]

Oh, Fifilatour! I'm *so* sorry about the progression....I can imagine how scary this is!

I don't have direct experience but I will say that having been in this community for a long time, I've seen numerous frightening situations with *amazing* turnarounds!

I'm especially hopeful for you because you've really just started with all this...I sometimes view the phrase "They just need to find the right treatment!" as platitudinal...But you've tried *just one*, one type/combo, so, okay, that one didn't work very well (or it worked well, but not very long...).

From what I understand, there are some drugs that are particularly effective on the brain (passes through the blood-brain barrier or similar? I'm not even sure this is necessary if they cyber-knife them, but probably, just to be sure?) and I think, but am even less certain, that there are others that are particularly effective in the liver. Please take nothing as gospel, btw...

So I really am hopeful that they'll maybe pull out some big guns/treatments to push back the current situation and then you'll stabilize again, and for a good, long time...

I wish you the very best....My "kids" are 24 and 26, even though they're technically adults, it really is challenging all-around...

Please take care!

Lynn

[Fifilatour in reply to Hidden]

Thank you, Lynn! Your reply means a lot to me!

[Pbsoup]

Welcome to a fellow San Franciscan (or, rather, Bay Area but who's counting) I second what Lynn said--I feel I have read accounts of many women who did well for a long time post cyber knife. There is also a lot that can be done for the liver--I have liver mets and am on Xeloda post Ibrance. Are you at UCSF? There are a lot of trials going on there as well so you might have those options too...

In any case, keep the faith!

[Fifilatour]

Hello PBSoup! Thank you - it is nice to meet you and know you are on Xeloda post Ibrance. I’m at Stanford. Thank you for the encouragement! Sure needed some today!

[USIrishcolleen in reply to Fifilatour]

Fiflatour,

I am at Stanford South Bay Cancer Center.

[michelangelina in reply to Fifilatour]

I am at Stanford (South Bay) too. I have been on Ibrance/Letrozole/Xgeva for 4 years. I can imagine that the brain mets are scary--but do not give up hope! There are so many treatments available now. Will be praying for you.

[Hidden]

Your world certainly has been rocked, with bad news so soon after starting treatment. It’s no wonder you are in such a state right now.It is good to hear your team are acting quickly and you will be starting treatment soon.

You might want to look at other posts on the board as I know there has been some discussion recently from Winner about his wife and the alternative treatments she takes, ones that cross the blood brain barrier such as Fenbendazole.

I wish you all the best and many years to enjoy this life

Clare

[Debbigbang]

Hi

So sorry this has happened. They have no idea why breast cancer can switch out to mbc. I pray they get this sorted out soon.

So..because mbc is such a hard nut to crack..I look at this experience as looking for the right sweater. BC is hormonal and the same yet different. Some can have a first line of meds for years. Some for yrs then boom it switches. It is all about the dang sweater lol.

I have mets in my liver and bones and was on ibrance/letrozole for 10 mths. That stabilized the bones but liver has yet to stabilize. I have moved on to fluvestrant/letrozole for about a month. I have a CT scan next month to see how things are going.

I can't be afraid anymore as that has taken enough from me. I am 59 yrs old 2 awesome baby boys 20 and 17. I still work, wish I didn't but it is what it is. We are all here for however long that may be. Live your best life with love and joy.

They will find a combo to stabilize as they are good at that. Just breathe ❤.

Deb ❤🙏

[Contrarielle in reply to Debbigbang]

It's v nice to hear from people in a similar situation. I don't know anyone else like us where I live.

[Arisgram]

Good morning, and I want you to know you are heard. This is very scary stuff. I feel I've been panicked for 3 years. I'm sorry you're dealing with this awful stuff.

I do not have brain mets but stubborn liver mets. I do have an Alabama neighbor who was diagnosed with liver and bone disease in 2014. In 2018 she developed brain mets and underwent SBRT. She is probably one of the most active women I know. She shows horses, raises goats, homeschools her 10 year old and is a Crossfit fanatic. She's clear of brain mets and remaining disease is stable.

She rarely posts here, but I will try to get in touch with her and see if she might reach out to you. She's an amazing story!

Best of luck to you. I'm sending good vibes from Birmingham. Much love, Andi

[Discocat]

Hi Liz, so sorry for your current progression. We're about the same age, I have one son who's almost 19 now, I was diagnosed about 9 months ago with extensive bone mets including spine and skull....so far nothing in any organs.I send you love and best wishes and hope you have a great response to your next line of attack! There are other women here who I believe have had positive results in similar circumstances....and I hope they can reach out and offer you some insight from their experiences.

As others have suggested maybe you can find more info by searching brain mets within the past posts and message some of the correspondents directly?

There are new and developing treatments coming out constantly...to the point that oncologists hardly have the time to catch up....stay strong and hopeful....as hard as it is.!!

Love

Zoe xx

[Timtam56]

Liz I’m no expert all I know is that we only have the time we have. and I don’t want to go on with all of those sort of words to you now in this time. I can just hear that you’re really really frightened and I totally get that.

I don’t know what else to say to you except that I hope you do get as long as possible and that all the fears you’re having now are not too heavy for you to carry.

As everyone always says to me, you never know, there could be some trial in the time that you’re here that lifts you up and keeps you going.

I know it’s always good to keep positive but I’m also like you, in that I like to know the reality as well, if, indeed, there is one.

Only your doctors can tell you where you’re really at based on the full history that they know of and I hope like hell you can get some relief and relax into some sort of supporting type of medication to keep this at bay for you. It must be really really frightening.

Sending you gentle hugs and lots of love from down under. Chris in Melbourne.

[morty87]

I had Gamma Knife in 2017 and did well. The only deterrent I found was that my balance and fine motor skills were compromised for a period thereafter. I have follow up brain MRIs every year - which have been stable. I am currently stable and take Ibrance, Letrozole and receive quarterly Zometa infusions. I pray you have positive results.

[DDIL1]

Hi FifilatourI know someone like this on another group. She had gamma knife. I’m happy to connect you if interested.

[daniellebrooks13]

Hello Fifilatour,I have been metastatic for 15 years and I’m HER2 positive. In that time, I’ve had 5 gammaknife stereotactic brain procedures with no complaints.

I’m taking Herceptin, Tucatinib, Xeloda and every 3 months exgeva.

Hang in there - it’s very frightening when you first hear about this, but not only will you get through it but I’ll bet that you thrive.

Danielle

[Contrarielle]

Massive hug for you. I am 55. I know this will be my story soon and the thought of leaving my two boys to fend for themselves freaks me out. My sister died of breast cancer in her 40s leaving son age 20 and 25. I wish she could see how awesomely they turned out. I think the time we spend now having fun, forgetting cancer, just being normal, (well, as much as we can be) , is more important thaN all the medicines, tests, and appointments in the world. Hope you live for ages!

[8576]

Sending hugs to you and hoping you have this resolved soon. I have MBC and have lost my left breast. Also my left hip and lungs which is stable at the moment. I keep getting the report out and reading it as I can't believe it. I have been fighting this since 2010. Can't believe it has been so long. All the best to you,

Cheers, June S.

[mariootsi]

Liz, I'm sure your onc will have a plan. One step at a time! I wish you the best in a bad situation!I'm sending hugs and positive thoughts!