Liver mets - help!

[Glas0824]

Liver mets- I’ve just found out my mets have spread from bones to liver. I’m gutted. Please share some good news stories to keep me going! ❤️🙏

[NickJoy]

This is an interesting trial - I don't know if it is any help but seems to be less toxic than regular radiotherapy:

clinicaltrials.gov/ct2/show...

Best NIcola

[Glas0824 in reply to NickJoy]

Thanks - I’m uk based and wonder if that’s America?

[NickJoy in reply to Glas0824]

It looks like it is in two hospitals in UK - I know how you feel though, so many trials in US and very few it seems in UK .

[Melpub]

Liver mets--like many symptoms--may mean nothing much. I know a woman with liver and brain mets who has been afflicted by them for a number of years--at least ten years, that is. So everything depends on how your particular tumors react to whatever meds your oncologist rolls out next. My only real advice is this: if you feel in any way unsatisfied by the oncologist's answers, or feel you're being rushed, or feel your case has not really been thought through carefully, consult another doc, no matter how tired or anxious you feel.

[Glas0824 in reply to Melpub]

Thank you for sharing - your response has really helped x

[dainla]

When I was diagnosed in Jan 2020 with MBC it had spread to bones and liver. Initial Stage 1 lumpectomy was in June 2012, followed by chemo, Radiation and 5 yrs hormone. The Oncologist that had treated me after surgery for 6 yrs recommended Ibrance and Letrozole. Second Opinion Oncologist said Verzenio and Letrozole. Visit to City of Hope, and it boiled down to ‘who’ do you trust to provide the best care. We went with Verzenio and Letrozole. There are side effects which are manageable with Imodium, Pepcid AC, and Ondansetron, we stuck with the program and followed a strict regimen and help from the Nutritionist on staff at my Oncologist. Happily, the scans have been showing rapidly decreasing lesions in the liver and bones at each interval and I get scans every 3 months. I also get an injection of Xgeva every 3 months. My Oncologist is very happy with the results and we’ll probably do follow up every 6 months from now on. I tell my Dr and Nutritionist immediately if I feel differently for any reason. My family is very supportive with my diet and food choices and understand it’s what my digestive system tolerates. Just be kind to yourself. Try to find joy in the little things you can do when you get to do them. One of my favorite foods: lactose free chocolate ice cream! My new favorite movie: CODA

My favorite sport team: Los Angeles Dodgers!!

[Glas0824 in reply to dainla]

Thank you - I do try to be kind toMyself. Feel a little stronger tonght… kids and I watching Liverpool play football ! However I have seen the LA dodgers too!

[Mumberly]

I was originally diagnosed a year ago because my NP found a number of small lesions scattered throughout my liver, plus three that were between 1 and 2 cm, during an annual scan I have on my kidney.

Further testing determined de novo MBC. Primary was a 1cm lump in my breast plus 3 affected lymph nodes and 3 spots in my bones.

I haven’t had any issues with liver function, or pain, etc. and treatment so far is showing shrinkage in the lesions.

As slow as the progress seems to be, I’ll take it as a win.

I wish you the best in tackling this new challenge.

Kim

[Glas0824 in reply to Mumberly]

Yes definitely a win! Thank you for your encouraging response x

[8576]

I am sorry you your cancer has spread to your liver but please don't feel gutted. Plenty of people have reversed this disease from the liver. You will be alright.

Cheers, June S.

[Glas0824 in reply to 8576]

Love the word reversed… liftedMy mood! Thankyou x

[Pinkpanzie]

I know that feeling you are having right now as the discover of liver mets has become your reality. I was stable, bone only disease for a year. Then, a tiny liver met was discovered during a 6 month CT. The plan here is to zap the met with SBRT radiation and continue with line 1 meds as bones are stable. I am worried but my MO and RO both believe this treatment will work. Good luck from 🇨🇦! Carpe diem!!

[Glas0824 in reply to Pinkpanzie]

Like the idea of zapping… something I plan to ask about c

[Thatflowerlady]

Hi I had a progression of Mets to the liver about 2 years ago . It was during the pandemic so it was about 8 months before a scan . I was on Ibrance & fasolax injections at the time . I kept feeling worse & worse , the medications had quit working . Once the progression was found a new treatment was suggested . I put my trust in my oncologist and asked which treatment she would recommend .I was given 2 options . Another oral chemo or IV chemo . I did 12 Paclitaxel IV a chemo treatments and continue with Herceptin & Perjeta every 3 weeks & CT Scans every 3-4 months . I also take exemestane 25 mg . I finished the Paclitaxel May of 2021. Yes I lost my hair BUT a I feel better than I have for a long time and it has grown back . 😀

It has really given me a quality of life again .

I am telling you my long story in hopes that IF you need to do an IV a chemo to know it is very doable and for me wasn’t as hard on my body as oral chemo pills.

I am sure they will come up with a plan for you that will shrink those Mets and hopefully have them disappear.

If you have any questions let me know

Luann

[Glas0824 in reply to Thatflowerlady]

Thanks, really appreciate the encouragement x

[Mumberly in reply to Glas0824]

Like ‘that flower lady’, I also had IV chemo before starting on kisqali and letrozole and it went really well - both from minimal side effects to effectiveness.

While people react differently to different treatments, as she pointed out in her post, it’s a do-able option.

K

[Gingerann1]

Dear Glas0824: Don’t give up hope! I have a dear friend who has been living with MBC for 7 years. She had only had bone Mets that were healing over nicely after several different treatments until last year when she learned of several spots on her liver. I don’t know what she was switched to but she just reported that her last scans showed all of the liver Mets are gone! She was surprised as well as her Onc. She and her husband are on a well deserved trip to Greece right now but on her return I will get more info to share with you and others about her meds. Having just reached NED myself in March with my lung Mets gone I am also proof that remission is possible and thankfully more of us are being given this incredible gift of time. Please try to stay the course and know that you have so much support in this community. Big hugs to you..Lin

[Glas0824 in reply to Gingerann1]

Yes hope is restored tonght. I think there’s just that awful day or so of shock and numbness x

[Gingerann1 in reply to Glas0824]

Yes, totally understand. Just like you feel when you’ve been in remission from initial BC (for me 8 yrs) and then you get that punch in the stomach that you now have MBC. Just thankful that we all have so many treatment options/combinations. Stay strong!

[atoth17]

I’m sorry your Mets have spread but hopefully you are feeling this community supporting you right now. I have had liver Mets since diagnosis in Nov. 2020 and I know they were there a year before that because we were “watching” them. All Mets in liver have remained stable this entire time on Ibrance, this is our goal. I would love them to melt away and maybe they will someday on another medication but I will take stable fir now. Deep breath. 😊🌸

[Glas0824 in reply to atoth17]

Yes definitely feeling the support ! Thank you ❤️

[valentinecalico]

Dear Jackie - I had a very similar post yesterday, as you know. I hope you saw some of the replies on my thread as there were some good stories there, as there are here. I am starting Abraxane (paclitaxel NAB) on Friday and hoping they zap my liver mets and make them disappear. Hopefully you will get a plan soon too. xoxo Peggy

[Glas0824 in reply to valentinecalico]

Thanks- on to plan B and a possible clinical trial for my lobular cancer ❤️

[embrace28]

i was diagnosed with de novo mbc in 2019 with mets to chest and liver. Currently, my mets in the liver is no longer showing and quality of life is wonderful! Grateful We have one of the most researched and well funded type of cancer. So keep smiling!

[Glas0824 in reply to embrace28]

That’s great to hear…. What are you on?

[embrace28]

Ibrance and letrozole for almost 3 years now and lupron injections

[Onedayatatime60]

I get your overwhelming concern. I have liver mets that shrunk with Taxol, Herceptin and Prejeta. Just returned from a week in Carribean. Feel great ❤️

[Glas0824 in reply to Onedayatatime60]

Thank you my plan b is in place xx

[Pbsoup]

I was stable, bone only for 2.5 years then had liver progression. That is now stable on Xeloda. I have hand/foot issues, mostly manageable with various creams and the occasional day of complaining to anyone who will listen.

My quality of life-for now- is still high. My markers are coming down to the lowest they have been. Could all change tomorrow, but for today it seems manageable.

I am a positive news junkie, so have read quite a few stories of women who trundle along just fine with liver mets for a good amount of time. Everyone is different of course... but hope is not a bad idea.

I did look into Y90 by the way. Radiologist said I am better off starting w systemic treatment as lesions are small but it's out there as an option down the road.... Do your homework and ask lots of ??? of the doctors!

[Glas0824 in reply to Pbsoup]

Thank you - got my plan b ready xx