How are people with liver mets doing?

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  • SusaninSF
    SusaninSF Member Posts: 1,213
    edited February 2022

    Wow! Five years! That's amazing. I was so happy to get two.

    Hugs, Susan

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited February 2022

    For those following.... my bilirubin dropped !!!!! 0.5!!!!!! I have never been more happy to be wrong (about thinking it was gonna go up again)...in my life!!!!! I was crying tears of relief...this ride...(Stage 4) wow...it can really be so stressful. :(. but these little tiny things help...

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  • BSandra
    BSandra Member Posts: 836
    edited February 2022

    Dear Nicole, we celebrate with you!:)

    Saulius

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  • Husband11
    Husband11 Member Posts: 2,264
    edited February 2022

    Whoo Hoo! for Nicole. That is great to read.

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  • SusaninSF
    SusaninSF Member Posts: 1,213
    edited February 2022

    Congratulations, Nicole! So happy for you!

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  • moth
    moth Member Posts: 4,800
    edited February 2022

    that's great news Nicole!!

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  • JustG22
    JustG22 Member Posts: 33
    edited February 2022

    WBC counts were too low on Ibrance so the oncologist is switching me to Verzenio which she states works better for liver mets and does not knock blood counts down as low. I had three lesions in segment seven of my liver and just underwent liver resection on Feb1, 2022 to remove 10-15 percent of my liver. Eleven days out and I'm doing well. Getting around as usual, just cannot lift over 10 pounds or drive. Not driving is the worst because my husband is an aggravated driver and gets frustrated. Makes for an awful experience. I have heard that Verzenio comes with diarrhea but if that's all I'll be good because I'm usually constipated. Hoping for a happy medium. Was wondering about hair loss with Verzenio. With Ibrance I did not have any hair loss and no side effects at all. It's all a big whirlwind but I am positive, take it as it comes, and live life to the fullest.

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  • SeeQ
    SeeQ Member Posts: 884
    edited February 2022

    JustG - There is a Verzenio for Stage IV thread that you may find helpful. Lots of good information about it, including dealing with the number one SE (the Big D - not everyone gets it, but most do). Regarding hair - when I was on the full dose 150 mg, twice a day, (plus anastrozole), my formerly thick hair thinned quite a bit. I would say I lost over half (about 2/3?) of my hair. After I reached NED at 7 1/2 months, I reduced my dosage to 100 mg. I can tell my hair is growing back in, slowly, as it's much thicker near the scalp - and I have these lovely 1-2" hairs that tend to stick out. I wear my hair medium length, so it's only got about 10 more inches to go, LOL!

    Verzenio for Stage IV thread:

    https://community.breastcancer.org/forum/8/topics/...

    Edited to add: I think the Verzenio documentation says only 30% report hair thinning/loss, so I may just be one of the lucky ones.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited February 2022

    Thanks so much ya'll!!!!!!!! you are all awesome you just really made my heart smile!

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited February 2022

    So ya'll I just talked to a woman on FB Barbara Bigalow....she is 6 years in remission yes...remission from Keytruda and Eribulin...while it almost killed her...literally she had a massive inflammatory response and had to be put into a coma for a week...it also cured her she has been on NO treatement for 6 years.....she was a receptor flipper as well...from HER2- to TNBC....

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  • moth
    moth Member Posts: 4,800
    edited February 2022

    Yes, Barbara was on the board for a bit a while ago. She & Judy Perkins are the 2 considered probably cured (plus the new ones announced just a couple weeks ago).

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  • BevJen
    BevJen Member Posts: 2,523
    edited February 2022

    Moth,

    do you have a link to people who were announced a couple of weeks ago? or do you know where they were treated? I know that Judy Perkins went through the NIH trials, but I can't remember if Barbara did something else. I know that Barbara suffered a cytokine storm and that she's had other health issues since her remission.

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  • moth
    moth Member Posts: 4,800
    edited February 2022

    ". The other two women had tumor shrinkage of 52% and 69% after six months and 10 months, respectively. However, some disease returned and was surgically removed. Those women now have no evidence of cancer approximately five years and 3.5 years, respectively, after their TIL treatment."

    https://www.nih.gov/news-events/news-releases/nih-...

    I think " One is the original woman reported in the 2018 study, who remains cancer free to this day." is probably Judy Perkins?

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  • BevJen
    BevJen Member Posts: 2,523
    edited February 2022

    I wonder. I just looked up an article about her and it said that she's been cancer free since 2016 -- so that would mean there was someone else in the mix.


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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited February 2022

    Bev...Yes Barbara Bigalow told me today she has been in remission since 2016

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  • BSandra
    BSandra Member Posts: 836
    edited February 2022

    Dear All, Barbara Bigelow was treated with HDCT and Pembrolizumab, it was written by her in her blog. Saulius

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited February 2022

    Sualius... I don't know what HDCT is but I was chatting with Barbara B. yesterday and she told me she took Eribulin and Keytruda...

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  • BSandra
    BSandra Member Posts: 836
    edited February 2022

    Dear Nicole, it stands for "high dose chemo therapy". Yes, eribulin and pembrolizumab, correct. This is what she went through during cytokine release syndrome which is rare with pembrolizumab, and which, most probably, killed all cancer (thanks god they managed to save her organs): https://barbigwire.com/2016/05/15/sleeping-beautyl...

    Her blog is amazingly interesting, full of details of treatments (but one have to spend time to find them), especially in 2015-2016. Her humor is up-lifting. Just what a sentence that is: "My 40+ doctors are amazed at my survival and recovery–one said I re-inspired his faith in critical care medicine.". She's such a strong and beautiful soul! When I found her blog in 2017, it was one of my main inspirations.

    Saulius

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited February 2022

    Does anyone get their Hemoylsis Index Value checked? Mine was zero which they say is normal..but now this week I was a 1? Anyone have that or know if its bad?

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited February 2022

    Hi Nicole, This is not something that has ever been measured for me but a quick Google search indicates a value of 1 is insignificant. I don’t think it’s anything you need to worry about.

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited February 2022

    Nicole- are they watching you for hemolytic anemia? I have been living with that for about 2 years. Fortunately, it’s stable now and I haven’t needed a transfusion in 6 months.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited February 2022

    Thanks Sadie...

    LFF I don't know she just started adding that test on when I started the Trodelvy....

    All my numbers look great and the TUDCA I am taking for liver... 2nd week 0.5 bilirubin !! and my Alk Phos even came down in the high 300's now...normally I would think treatment is working..but I don't believe it is bc my liver pain where the Y90 tumor was done...and lit up on last scan is...it still hurts...so I think its just the TUDCA really working on the liver numbers... First supplement I can legitimately say works.

    But I hope I am wrong and the treatment is working..lol

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited February 2022

    Nicole- I am going with the treatment is working philosophy. Celebrate your numbers and successes. Maybthings be turning for you.

    Hopefully your RBC blood counts remain stable.

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited February 2022

    a nice meeting 2 years ago that FB reminded me of. It was so great to meet such a wonderful person in person Susan. Glad we are still fighting.

    image

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  • SusaninSF
    SusaninSF Member Posts: 1,213
    edited February 2022

    LFF,

    Was so wonderful to meet you in person. I treasure that memory.

    So funny that we're all smiles even though we are in the middle of a hospital infusion room! Haha!

    We have made it this far. We will keep finding ways to stay alive for the next new treatment.

    Love you, Susan

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  • BSandra
    BSandra Member Posts: 836
    edited February 2022

    Beautiful and very informative comment by Dr. M. Melisko et al on surgery in mBC. Lot's of hope: https://www.onclive.com/view/potential-role-of-sur...

    Saulius

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  • SusaninSF
    SusaninSF Member Posts: 1,213
    edited February 2022

    Just got my scan results yesterday. Everything is shrinking or disappearing! Haven't had a scan this good since I was on Alpelisib (Piqray) almost four years ago. Usually, the best I could hope for was small progression or stability.

    No noticeable side effects so far. Will get my 3rd infusion next Thursday.

    If anyone wants to give ARX-788 a try, they are still accepting new patients.

    https://clinicaltrials.gov/ct2/show/NCT04829604

    Cheers, Susan

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  • Chico
    Chico Member Posts: 196
    edited February 2022

    Wonderful news Susan. So happy for you

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited February 2022

    Fabulous news Susan! I'm another month a bit out from my next scan and have my doubts that it is shrinking the liver mets based on symptoms. I wondered what the plan would be if it was stable or only a small progression given my limited options. Wish there were more clinical trial options here!

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  • Nkb
    Nkb Member Posts: 1,436
    edited February 2022

    susanSF- this is such exciting news!! So happy to read this! I hope you are also feeling good.

    Salías- thank you for the article. Dr Melisko is my second opinion doctor at UCSF and has been a wonderful resource.

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