36 y/o; stage iv; metastized to liver/bone. Anyone similar?

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JCNC
JCNC Member Posts: 17
edited May 2016 in Stage IV/Metastatic Breast Cancer ONLY

Hi. I am new to the boards and hope and expect to be posting here for a very long time. I wasrecently diagnosed with metastatic breast cancer that had gone to the liver and bones from what is known so far. The Breast bone and lymph nodes behind there , along with the auxiliary lymph node Is also cancerous.

Er-, pr-, her2+

The treatment regiment is 6 months of taxol , once a week, every week with 2 targeted anti HER2 therapies given every 3 weeks.

Would love to hear from anyone out there in a similar situation on their progress, hope, side effects of treatment, expectations or anything at all during this tough time

I know this is not curable but obviously looking to be around for years and years. I'm only 36.

Thanks for listening!

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2016

    Hi JCNC, and welcome to Breastcancer.org!

    We hate that you have to be here, but we're really, really glad you found us! You're sure to find the wonderful support you're seeking here. Our Community is chock-full of incredible, knowledgeable, helpful members who are happy to answer questions and root you through treatment!

    While the members here in the Stage IV forum are sure to be a huge help, there're also some other really great forums and threads you should check out:

    We hope this helps.

    Looking forward to hearing more from you and we thank you for joining and posting! We're all here for you!

    --The Mods

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  • Kandy
    Kandy Member Posts: 1,461
    edited April 2016

    I just wanted to welcome you to this elite club. I wish you didn't have to be here. But since you are, you will find that we are an awesome group of people that will share advice, experiences, or just lend an understanding ear with needed. I really don't have any advice, my age and diagnosis is a little different from you. I am pleased you have a plan in place. That typically makes it a little better. I'm sure others will be along shortly. Wishing you nothing but the best.

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  • gramen
    gramen Member Posts: 179
    edited April 2016

    JCNC,

    Welcome, I'm a newbie to this blog and stage iv as well, but glad you are here. I've found tons of good info, advice and encouragement from this awesome community.

    I'm also 36 and her2+, just started on weekly mild chemo (navelbine, since already had a taxane before), herceptin/perjeta every 3 weeks.

    I'm very hopeful to see us both hanging on this blog for a long long time :-)

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited April 2016

    I am so glad you have found this forum although I'm terribly sorry for the circumstances that brought you here.

    The initial weeks and months after a mets diagnosis are the hardest. Dealing with the shock and fear can be very difficult. But as others have said, over time it gets a bit easier, and you'll find many people who are doing well with a good quality of life!

    Please remember to keep copies of all tests results and scans in case there eventually is a need or desire to have a second opinion from a specialist outside your medical network.

    As a quick aside, since you have bone mets I'd imagine that you are also taking a bone-directed therapy such as Xgeva or Zometa along with your other treatment.

    I've compiled a 120 page booklet about Metastatic Breast Cancer treatments, side effect mitigation, and cutting edge research regarding the disease.You are welcome to request a complimentary copy by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/...

    Two published books which you may want to read are:

    "Anti Cancer: A New Way of Life" by Dr. David Servain-Schreiber.The author, an MD, was diagnosed with a malignant brain tumor which he survived for nearly 20 years by following the science-based principles described in his book.It contains excellent information about diet and supplements, as well as emotional well-being.

    "Life Over Cancer" by Dr. Keith Block, an expert in integrative oncology who combines cutting-edge conventional treatment with individualized and scientifically-based complementary therapies.This book is an excellent resource for those who are interested in combining conventional and complementary therapies.

    Please post if you have questions, and wishing you a great outcome!
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  • pajim
    pajim Member Posts: 2,785
    edited April 2016

    Welcome JCNC! So sorry to meet you. Welcome to club mets -- only the best people belong.

    Glad to hear you have a treatment in place. The chemo threads should be able to help with the taxol side-effects (it's been so long since I took it). I would guess there's a good thread with the HER+ ladies.

    I do remember when I took chemos that I was highly annoyed the doctors couldn't tell me the side-effects. The answer is because they didn't know! Every woman is different and has different side-effects.

    Several ladies your age have recently joined us. You might want to search for and revive the "Ladies in their 30s" thread.

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  • JFL
    JFL Member Posts: 1,947
    edited April 2016

    Welcome! Sorry you have to join us. I was diagnosed with liver, bone and lymph node mets at 38. Now 39, doing well despite the ups and downs of treatment. You are not alone here. There is a thread for those in their 30's. You will find others in a similar boat there.


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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited April 2016

    here to welcome you as well. I'm 37 now. Dx at 34 with liver and bone mets. Had taxol/herceptin/perjeta combo...dropped the taxol after 18 weeks...still going strong on h/p 3 1/2 years later!

    I remember when I was newly diagnosed...I read everything I could find on the Internet, books, medical journals, etc. I wanted to find someone who was "like me." I'm either stubborn or a slow learner. It took me awhile to realize (as said above) we are all different and all respond differently to treatment...even at the same age and similar dx.

    Cancer sucks, but these ladies have been my lifeline and the information and friendships made here are invaluable! Best of luck to you :)

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited May 2016

    JCNC,

    Just wanted to say hello and wish you all the best in your treatment. I had just turned 36 when I was diagnosed with mets to the bones. It was shocking and crazy, but now it's over 5 years later and I try to not let cancer take over my life. I've done lots of traveling, got a promotion at work, and enjoy lots of time with friends and family doing fun things. Getting information about your treatments and being your own best advocate will help you along the way. Take care!

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  • Hubsofamanda
    Hubsofamanda Member Posts: 8
    edited May 2016

    It will get better! My wife was diagnosed with bone Mets and innumerable tumors in her liver 6 months ago. When she started on AC in November 2015 she was at early stage liver failure. It was scary and very hard for her and the family. She was 39 at the time. 4 Dose dense AC treatments (very difficult for her to handle) and 12 taxol treatments (soooo much easier for her to handle. As she would say she was able to live a more normal life on taxol, sleep 12 hours a day but could go to Costco and drive kids around during the day). Along with the weekly taxol she also received herceptin and perjeta every three weeks. She had number 12 taxol a week ago and had a scan. The results were no signs of damage or cancer in her liver. A few little stable bone mets but going from liver failure to no signs of cancer in her liver is amazing! The AC gave a 40% reduction but the taxol took it out completely. The mental game gets better also. That is our experienceI hope it gives you hope because there are a lot of women who have survived for years and years! Hang in there

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    Sorry to have you join this club, but welcome at the same time! I was 38 when I was diagnosed with breast cancer & then discovered it was in my liver. I know how hard it is to get that news when you don't fit the supposed timeline, but I was er/pr+, her2-. I believe there are several women on here that have had good results and/or gotten to NED with similar statistics as you. I know mine is different from yours, but I've gotten 3 years of NED after a good response to my initial treatments. So, just know that stable or NED are possible to help you get the possibility of many years.

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  • car2tenn
    car2tenn Member Posts: 515
    edited May 2016

    To JCNC,

    Oh my can I relate EXCEPT that I am 30 years older than you are...Nevertheless, I was stage 4 from the diagnosis and 2. 5 years later I am in remission. I know as young as you are that your rage against this disease must be powerful. Just know that there are wonderful treatments coming on board. You need to be your own advocate. And know that in your lifetime I expect there is going to be a cure. Be easy on yourself and have faith. Carolyn from Music City

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited May 2016

    Hi JCNC

    I am so sorry you have to join our group and so young. I was dx at 41 with liver and bone mets from the start. I am very weakly ER positive and HER2++. I did 6 cycles of Taxotere, Carboplatin and Herceptin and a pet scan found me NED after three cycles. I finished my chemo and continued with Herceptin and Aredia (for bone mets). I also did a year of Tykerb. I am just on Herceptin now and it has been over 8 years. I am still NED and with the exception of infusions every three weeks, I live a pretty normal life.

    Like the other ladies said, keep track of your test results and know the drugs you are taking and the side effects. I wish you the same outstanding results that I have experienced. It is overwhelming. My kids were 8 and 11 when diagnosed and my youngest just turned 17 and my oldest will be 21.

    Jen

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  • JCNC
    JCNC Member Posts: 17
    edited May 2016

    Thanks All -

    I just found out that along with the liver and bones there are also mets to my spine. Treatment regiment will be the same and actually just had my first treatment yesterday. Taxol , herceptin, and perjeta. Next day I had a few side effects like flushing of the face and chest , allergy like symptoms (similar to pollen with scratchy throat, slight cough , etc). Also the diarrhea has started.

    I know this is the best regiment and I'll be going through the taxol every week for 6 months (every 3 weeks with herceptin and Perjeta).

    Sometimes it hits you and with 2 young kids (5 & 3) you want to be able to get through all of this and although still in slight denial over this whole thing I'm hopeful to get through all of this and hang around for a very very long time.

    I support all of you as well and it's great to hear you are all doing well and staying strong. Let all of us be known for these drugs having long lasting positive effects for years and years to come

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  • petjunkie
    petjunkie Member Posts: 317
    edited May 2016

    Just wanted to welcome you-- I was diagnosed with MBC at age 35, mets to bones and liver, ER/PR- and Her2+, just like you. That was six and a half years ago and I'm still doing well! Taxol kicked my cancer's butt, first round cleared out my liver mets and they have never come back. I just finished several months of Taxotere, Perjeta, and Herceptin. Worked so well that I'm on a break now and am recovering. Over the years the chemo gets harder, your body can get worn down. But I'm still enjoying life, living independently, going on vacations with friends.

    I hope you have a great response to treatment and many, many Mother's Days in the years ahead!

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  • brandall
    brandall Member Posts: 687
    edited May 2016

    Hi JCNC, Sorry you have to be here. I was 36 when I was diagnosed in 2012. I had tumors in my liver from the get go. Like you, I had a 3 year old and a 5 (almost 6) year old, they are now 6 and 9. I was ER+, Weakly PR+ and HER2-. I have been NED at some points and had progression at others and been on a few medications, but in July, it will be 4 years since diagnosis and (knock on wood) I am doing quite well. Still running and doing all of the things I want to do! Good luck to you!

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  • phrogger78
    phrogger78 Member Posts: 115
    edited May 2016

    I am sorry you are here. I haven't been on much lately, school has been really busy for me, but I am "younger" as well, I am 37 with a met to my lung, I was diagnosed with cancer in December and we found it in the lung in January. I am ER and PR + highly receptive for both and her2 - . So I am sure our treatments will be different, but cancer sucks for all of us, so I hope we can be of help in any way possible.

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