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Any stage IV surviving 5+ years ?

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  • moth
    moth Member Posts: 3,293
    edited February 2021
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    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.

  • olma61
    olma61 Member Posts: 1,016
    edited February 2021
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    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.

  • amontro
    amontro Member Posts: 184
    edited February 2021
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    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?

  • olma61
    olma61 Member Posts: 1,016
    edited February 2021
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    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

  • illimae
    illimae Member Posts: 5,572
    edited February 2021
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    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.

  • lehrski
    lehrski Member Posts: 68
    edited February 2021
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    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.

  • handmaidofthelord
    handmaidofthelord Member Posts: 10
    edited March 2021
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    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.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2021
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    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/...

  • handmaidofthelord
    handmaidofthelord Member Posts: 10
    edited March 2021
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    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.

  • moth
    moth Member Posts: 3,293
    edited March 2021
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    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

  • elderberry
    elderberry Member Posts: 1,058
    edited March 2021
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    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.

  • handmaidofthelord
    handmaidofthelord Member Posts: 10
    edited March 2021
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    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.


  • SusanR
    SusanR Member Posts: 59
    edited March 2021
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    12 years with Bone Mets here

  • chico
    chico Member Posts: 188
    edited March 2021
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    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?

  • cure-ious
    cure-ious Member Posts: 2,734
    edited March 2021
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    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
  • SusanR
    SusanR Member Posts: 59
    edited March 2021
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    Ibrance didn’t work for me, and I’ve been through quite a few others, but I’m thankful to remain bone Mets only

  • SusanR
    SusanR Member Posts: 59
    edited March 2021
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    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.

  • amontro
    amontro Member Posts: 184
    edited April 2021
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    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.


  • perky2020
    perky2020 Member Posts: 72
    edited September 2021
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    Thank you SusanR for posting! Love the inspiration!

  • Partyoffive
    Partyoffive Member Posts: 53
    edited September 2021
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    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

  • mikainsb
    mikainsb Member Posts: 32
    edited January 2023
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    Let’s do a roll call! How many years have you been metastatic? What are you currently on? How is your quality of life?


    I’ll go.

    * 7 years metastatic

    * Currently on Trodelvy

    * Just started Trodelvy, but trying hard to do at least a three mile walk a day and work full time.


    Would love to hear from others

  • chicagoan
    chicagoan Member Posts: 963
    edited January 2023
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    * 6 1/2 years metastatic

    *Ibrance/Letrozole

    *Enjoying a great quality of life. No serious pain-just minor aches and pains which could be due to my age. I travel, play a lot of pickleball, do yoga and walk. I stopped working shortly after my diagnosis but now am considering getting a part-time job.

  • candy-678
    candy-678 Member Posts: 4,086
    edited January 2023
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    * 5 years 4 months metastatic-- bone and liver

    * 2nd line therapy--- Ibrance/Letrozole/Lupron for 4 years, and now Lynparza/Lupron

    * Worse side effects are fatigue and GI issues (from Lynparza). I have RA also, so I have a lot of joint issues unrelated to cancer. Not a great quality of life. Stopped work in 2nd year of metastatic diagnosis. Could not work now if I wanted to, which I do want to, as I miss it. I spend a lot of time in my house.

    Edited to say--- I think that cancer has changed my QOL for sure. I tire easily. This treatment causes GI upset that is unpredictable, so it is hard to plan things. But, also, cancer has changed my life in the way of having to stop my career, and also, in turn, has made me be on a fixed income now. I don't have the freedom that I had to buy things, do projects on my home, or be free to go places with friends. Also, as you know if you read my posts, I am more fearful of catching things since I am immunocompromised now. I did not used to be that cautious about germs, but now, with my low counts, I know I have to be careful of colds/flu/Covid/etc. The joint/RA issues are not cancer related and probably would have happened over the last 5 years no matter of the cancer. But my docs are also less inclined to treat my issues due to the cancer--- telling me I am not a surgical candidate and that some treatments are off the table now.

    I just wanted to clarify my situation.

  • nkb
    nkb Member Posts: 1,561
    edited January 2023
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    5 years 9 months for Stage 4. bone only still. on 4th treatment that is Enhertu- I am Her 2 low- QOL much better on orals for me and hope to have one to go to when this stops working. Did travel a lot and felt quite good on the previous orals (ibrance, Afinitor and Xeloda. Still walking a lot.

    Congratulations to everyone on their milestones!

  • olma61
    olma61 Member Posts: 1,016
    edited January 2023
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    * 5 years and 5 months since I found the breast lump. Stage IV de Novo.

    * Still on my first line Herceptin/Perjeta plus anastrozole. Thank God & Dennis Slamons for Herceptin

    * QOL is excellent, I get tired sometimes but who knows if it is aging, my naturally low hemoglobin, thyroid nodules, or cancer treatment doing that to me. There is nothing i did before that I cannot do now and I am so blessed to not have experienced any cancer pain up until now.

  • cure-ious
    cure-ious Member Posts: 2,734
    edited January 2023
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    7.5 years (07-2015), ER+ PR- HER2-, extensive bone mets

    First line treatment: Ibrance-Femara, 5.5 years

    Second line treatment: Ibrance-Faslodex, 1.9 years, then switched last month to Verzenio-Faslodex, owing to Ibrance-induced neuropathy

    Life is sweet!!! There is always hope!

  • gailmary
    gailmary Member Posts: 426
    edited January 2023
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    6 yrs with mets er/pr+ and Her2- grade 1

    bone only till a year ago but treatment continues to kill off new spots in lung so no change in meds.

    Yr 1 -radiation to only bone met. Then started Letrezole, Faslodex , Ibrance AND Xgeva.

    Yr 2, dropped Ibrance

    Yr 4 dropped Letrezol

    Yr4.5 dropped Xgeva still on Faslodex

    QOL- Pretty good really. Working in the woods and garden all summer. Complain of side effects more than I should. Little pain.




  • margaritams
    margaritams Member Posts: 183
    edited January 2023
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    7 years 9 months with inflammatory MBC with mets to liver, bones, skin, muscle: ER+/PR- HER2+

    Treatments have included Taxol, Herceptin, Perjeta with Zometa. Radiation, mastectomy. Then just HP and Z. With progression, back to Taxol then Abraxane when neuropathy got too bad. Then Kadcyla and Zometa. Then SBRT to spine. More Kadcyla with Zometa. More SBRT to muscle this time. Then Keytruda, Herceptin and Zometa. Then NED, drop Zometa after 5 years. Dropped Keytruda after 2.5. Now only on Herceptin. 3.5 years NED - and (hopefully) counting!

    Quality of life is pretty good though there have been times that it was worse than now. Mostly, I have fatigue, digestive issues (from immunotherapy) and some residual issues from spinal, muscle and nerve damage but it’s definitely doable.

  • goldie0827
    goldie0827 Member Posts: 6,825
    edited January 2023
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    *9 years MBC (2014) Original diagnossis 2008

    *Currently on Enhertu, Faslodex, Xgeva.

    *Prev. tx's Xeloda, Verzenio, Herceptin/Perjetta

    No pain, QOL is good

  • dghoff
    dghoff Member Posts: 235
    edited February 2023
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    *7 years and 1 month since Mets diagnosis. HR+, PR+ and HER2+. Mets to lungs, liver, and bones.

    * Started with 15 weeks of Taxol and Herceptin/Perjeta. Then dropped the Taxol and am still on Herceptin/Perjeta, but I switched to the Phesgo shot version about 9 months ago and it's so much easier than getting infusions! Also on Letrazole and X-geva. I, too, am so grateful to Dr. Slamons!

    I have some neuropathy in my foot and fingertips from the Taxol, and I get muscle cramps sometimes, but I mostly feel pretty great, and I am able to teach yoga, rock climb, hike, canoe and kayak, and do all the outdoor things I love to do. I'm still working full time and living a pretty much normal life currently.