Any stage IV surviving 5+ years ?

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  • moth
    moth Member Posts: 4,800
    edited February 2021

    just on a point of information, Herceptin is still Herceptin. Kanjinti is a biosimilar drug, sort of like a generic version. Just want people to understand that (heard recently from someone who went for treatment and was suddenly being switched without prior discussion! I mean they're sort of interchangeable but the pt should know in advance that it is a change and a biosimilar is not identically the same)

    Plenty of Stage 4 people live 5 years or more. I know the human brain is primed for stories but we can't go by these threads though since by definition the people who didn't make the 5 years aren't posting, kwim?

    There is a study looking at 2010-2015 SEER data (which means it's probably de novo dx which might be a bit different from recurrence stats, but it's what we have). So not taking into account that we have learned some new things in the past 5-10 yrs, we can already see then that some pts will live > 5yrs. Hormone profile and location of mets are large predictors of this... Of course we all hope to be outliers and super responders :)

    https://bmccancer.biomedcentral.com/articles/10.11...

    Figure 3 has it all neatly broken out by subtypes. Bone only HER2+ do have the best prognosis.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2021

    About Herceptin/ Kanjinti- I am another one who was told the day of my visit that I was getting Kanjinti instead of Herceptin. Then I was asked if I was okay with it 😆. I said it seemed like I didn’t actually have a choice so I’ll take the Kanjinti.

    I have since switched clinics and that was not the sole reason, but I am happy to be getting the Herceptin shot now, especially with COVID.

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  • amontro
    amontro Member Posts: 504
    edited February 2021

    I was also switched from herceptin to kanjintin without being asked. Since I get infused only every three weeks, I was told about a month ago, "by the was, this is not herceptin, it's kanjintin", never mentioned again.

    I noticed around the third time after the switch, I have had worse side effects and longer lasting than with herceptin. I have been having dizziness. severe body aches, diarrhea, etc. I thought it was me getting older and sicker as time goes on. The SE take longer to go away, but in a week, I get back to feeling "normal" (for me). With herceptin, the effects were milder and went away in a few days.

    Anyone else have worsening side effects? I won't be seeing my onc for another 2 weeks to ask about it. Is it because it's cheaper, and will herceptin still be available?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2021

    amontro, yes, Kanjinti is cheaper and at my former cancer center they said some insurances weren’t covering Herceptin anymore. But that was not true for me, my insurance still covers it.

    As for side effects, I am on the Herceptin shot now (Herceptin Hylecta) and I have noticed low level nausea in the middle of the three week cycle. Even when I was on Taxol, I didn’t get nauseous but now I have days where I feel so queasy I have to go lay down and just thinking about certain food disgusts me.

    I wonder if it is due to the change in drug. Even though it is still Herceptin, the carrier ingredients are different so I do wonder if those ingredients could be giving me nausea...


    I only had the Kanjinti two or three times before I left so I don’t really know if there was a difference there. I have been on the Hylecta shot for ten months now

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  • illimae
    illimae Member Posts: 5,710
    edited February 2021

    I was switched to kanjinti at a local onc where I’m moving to soon (was there for a month visiting). I got confirmation from main MO that it was ok but my EF dropped to 45% and I had to stop treatment. Once it improved, I was put back on Herceptin.

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  • lehrski
    lehrski Member Posts: 94
    edited February 2021

    These stories are hopeful! Mikainsb - I’m in SLO and don’t know anyone else who is stageIV. If you’re up for a hike and chat sometime your direction, let me know.

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  • handmaidofthelord
    handmaidofthelord Member Posts: 7
    edited March 2021

    Just wanted to say thank you to all of you who've shared encouraging examples of long term survival and thriving!

    I was just informed a few days ago that due to some liver lesions, what I originally thought was Stage II/III is now actually Stage IV. That's a big swing from the whirlwind of my biopsy results in Jan 25, mastectomy in Feb 8, and waiting to start my chemo on March 10. I was optimistic that I could beat this cancer, and so I crashed hard into despair when told I'm actually now "incurable".

    I should mention that I'm also just 35, just celebrate my 4th wedding anniversary, have a 19mo old son, and oh... I'm 18 weeks pregnant. I have MBC but I have to wait until after I deliver in July to fully get tested for possible mets/spread and use treatments other than basic chemo. I feel like this aggressive cancer could be having its way with my organs and I only have a thin line of defense in the meantime.

    I am still terrified of what lies ahead and still grieving the long healthy life I thought I would have. But these stories have at least made me believe there's a good chance I will still be alive in 2 years.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited March 2021

    Handmaid

    I am going to send you several links where you might get better response to your specific situation. Cut and paste what you wrote here and share to the suggestive links below.

    I noticed this is your 1st post. Hang on..there are women like you that can give you the support you need.

    Search for JFL in Stage IV and look at her earlier posts. She is a young mom and diagnosed with bone and liver mets in later stage of her pregnancy 6 years ago. She is taking a break from BCO right now to manage her job, caring for young son and adjusting to treatment change. Also search for Leftfootforward. She is also young mom.

    Our cancer may be uncurable, but it is treatable. We adapt and continue living.

    It seems I can only cut and paste one link at a time, so I will just edit to add more. When starting out on BCO, look for threads that have your similar cancer traits, like liver mets and also the specific treatments you are on.

    Please don't despair..it is rough, but you have come to a good place for support. Also download Bestbird's free copy on guide to metastatic cancer...see link. You can also order a copy from Amazon. I did so I could take notes.

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

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

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

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

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  • handmaidofthelord
    handmaidofthelord Member Posts: 7
    edited March 2021

    Sandi,

    It's so kind of you to take the time to respond and refer me to those links! I am amazed by the time and effort women here take to share encouragement and information with each other. Oddly (or sadly?) enough it helps a lot more than any words of comfort friends and family try to give.

    I will definitely start posting my story around and participating in the topics that apply to me.

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  • moth
    moth Member Posts: 4,800
    edited March 2021

    handmaidofthelord, so sorry you're joining us here.

    Sandibeach gave you good resources. I hope to see you in in liver mets threads. Thinking of you and your young family

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  • Elderberry
    Elderberry Member Posts: 993
    edited March 2021

    handmaidofthelord: I am so sorry to see you here. It is a cruel fate to be young and with a baby on the way. I came here a lot (A WHOLE LOT) when I was first diagnosed. Sometimes I posted. Sometimes I just read. It is okay to lurk and gather encouragement and knowledge from all the wonderful women here. You are safe to come here to cry, rant, share news both bad and good. You 'll always find cyber-arms to hug you. We understand you in ways that loving friends and family may try to but cannot.

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  • handmaidofthelord
    handmaidofthelord Member Posts: 7
    edited March 2021

    Thank you for the welcome and wishes, moth and elderberry! I will definitely be coming here whenever I need some reassurance or have nagging thoughts or questions worrying my mind. It's a relief to have such a place to run to for that! We are ALL going through struggles, but it's definitely an act of compassion to still come here and share what we know about our different situations.


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  • SusanR
    SusanR Member Posts: 598
    edited March 2021

    12 years with Bone Mets here

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  • Chico
    Chico Member Posts: 196
    edited March 2021

    Hi Susan lovely to see you posting. I remember “talking” with you back in 2016 when we both started Ibrance & Femara. I’m thankfull still on that combo with extensive bone mets only. How are you doing?

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited March 2021

    Hi Susan!! Like Chico, I'm waving at you, too!!! Thanks for popping on to inspire us!!!Pin by Www Exoticbubblegummom on Marvellous Minions | Minion gif, Minion dance, Minions

    Dance Minions Sticker by imoji
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  • SusanR
    SusanR Member Posts: 598
    edited March 2021

    Ibrance didn’t work for me, and I’ve been through quite a few others, but I’m thankful to remain bone Mets only

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  • SusanR
    SusanR Member Posts: 598
    edited March 2021

    Thanks Chico and Curious!Ibrance didn't work for me, and I've been through quite a few others, but I'm thankful to remain bone Mets only.

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  • amontro
    amontro Member Posts: 504
    edited April 2021

    I wanted to add since my last post, I requested my onc to take me off of kanjintin, and put me back on herceptin. I am happy to say, I'm back on it since my last infusion, last week. I discovered that kanjintin is a biosimilar form of herceptin, and I need the real deal.

    Now I know that I had been getting terrible side effects from kanjintin. Perhaps, some of you may not notice a difference, but I can be sensitive to some meds and stuff.

    Make notes of your SE symptoms with kanjintin, after every infusion, and see if it all adds up. My SEs lasted over a longer period of time, too.. Don't be afraid to ask for the change if you want to. This is only my opinion, but I've been on herceptin for stage 4 for over 12 years.


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  • perky2020
    perky2020 Member Posts: 64
    edited September 2021

    Thank you SusanR for posting! Love the inspiration!

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  • Partyoffive
    Partyoffive Member Posts: 188
    edited September 2021

    hi

    I posted a few years ago but here I am at almost 8 1/2 years. I was diagnosed de nova with innumerable bone mets and have had a progression to my abdomen but Im still here and I’m thankful for every day I have to make memories and be with my family.

    Kristin

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