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Pls some positive stories. There have to be some

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  • Linda11111111
    Linda11111111 Member Posts: 28
    edited February 2020
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    Hi!

    One more thing...it really helped me a LOT is to find a fantastic oncologist. Once you have that, you can take some pressure off yourself and rely on the wisdom of your doctor. Every doctor and person is different so even a great doc might. not be the great doc for YOU. Hopefully you have some choices and will be able to find someone who you completely trust and who completely understands where you're coming from. Also, once you decide on a treatment plan, the stress eventually gets a much better. Things eventually become "normal" though as most people here will tell you, it's a "new normal." Sending positive thoughts your way!

  • dlittkemann
    dlittkemann Member Posts: 91
    edited February 2020
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    Linda thank you. I have had 3 difft opinions on my scans. Very scary! So mri soon to see if any more spots in bones. Hope not. I can’t imagine any normal right now so I pray you are right and I will find my new normal soon. I’m still sad. Shocked. Scared and again shocked.

  • dlittkemann
    dlittkemann Member Posts: 91
    edited February 2020
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    ...being triple negative too is beyond scary. I do appreciate all the kind words and positive posts. I’m going to re read them now. It helps w my state of mind.

  • pajim
    pajim Member Posts: 930
    edited February 2020
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    dlitt, My MO this week pointed out to me that I have had the luxury of basically ignoring the fact that I have advanced breast cancer for 7 years! (Then I ran into a spot of trouble) Sure, I did my treatments and showed up at the cancer center every 3 or 4 weeks, but otherwise I lived my life as if nothing had changed. My MO was totally on board with that.

    It took six months to get to that space. Needed to set up treatment and recover from the surgery required when they discovered my mets.

    I hope for you that they can radiate the heck out of your mets and you too will be able to ignore all this.

    As for drinking wine, feel free. I still do and I have liver mets. MO just says to drink the good stuff. Some of my treatments have kept me off it (because it tastes bad) but in general a glass of wine a day does no harm. It contributes to your quality of life.

    (FYI there are ladies on these boards who would disagree with me and have very good reasons for doing so)

    Hang in there. I know it's hard, particularly at the beginning. I second the point that you need an oncologist you (a) can trust and (b) can get along with. Remember that this will be a long-term relationship. My MO and I have been together for 12 years.

  • dlittkemann
    dlittkemann Member Posts: 91
    edited February 2020
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    Thank you Pajim. That helps me a lot. Glad to know it takes some time and then I will feel better than I do right now. I’m in total shock and cried most of the day. But it’s new to me. So I pray I too get to be here a while yet and also adjust to this as if it’s just a chronic disease so to speak. I appreciate you taking the time to reply. Helps so mucb

  • cure-ious
    cure-ious Member Posts: 2,762
    edited February 2020
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    Pajim- Hearty Congrats on Seven Years!!!!

    has your MO ever suggested a clinical trial?!

  • dlittkemann
    dlittkemann Member Posts: 91
    edited February 2020
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    **update. MRI results in and it’s throughout whole spine. They are going to hit me w chemo and immunotherapy. Is there still hope? Praying there is. I’m struggling. Thanks again for all the replies and help.

  • moth
    moth Member Posts: 3,293
    edited February 2020
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    hang in there. The immunotherapy treatments for triple neg are very promising. I'm here with you in the 'this stage 4 thing is new' numb, shock and tears phase. I hear it does get better so let's cling to that.

  • dlittkemann
    dlittkemann Member Posts: 91
    edited February 2020
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    @moth thank you for those encouraging words re tnbc and immunotherapy. Us tnbc pts dont have a lot of options so I’m praying with all my being this works so well and gets rid of all spine cancer mets. I just need be here w my boy. He’s 5. For 15 more years. Praying so hard for this.

  • dlittkemann
    dlittkemann Member Posts: 91
    edited February 2020
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    moth stay in touch. I don’t know other tnbc stage 4. Praying what you said about immunotherapy is true. I too have heard it works well. Praying for that for both of us and all survivors her

  • moth
    moth Member Posts: 3,293
    edited February 2020
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    for sure will dlittkemann! I just met with my MO today; trying to get into an immunotherapy trial but it's only for TNBC and one of my samples ages ago tested weakly ER+ (I might have a heterogenous tumor) so waiting to see if I pass the screening with the sample they're submitting.

  • Kkmay
    Kkmay Member Posts: 89
    edited March 2020
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    My mom was diagnosed yesterday with stage 4 TNBC and I’m devastated and frightened. Her MO said that he will start her on new chemo via IV. She already has been on AC taxol Carbo and Xeloda. I don’t know what type of chemo he is gonna give her?

    Any treatment suggestions? Please help

  • dlittkemann
    dlittkemann Member Posts: 91
    edited March 2020
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    sorry for this. Not easy. I am only 45 w a 5 year old so I feel your worry and devastation. Where are her mets? I’m on Abraxane and Tercentriq (immunotherapy). Only had one treatment and going for number 2 today. Another lady here is also on Abraxane. My Dr said and many have here too, that with so many advances in bc, that’s its treated more like a chronic disease now. How’s old is your mom? Ask me anything. I have had great support here. Keep coming back. It helps. Esp the positive stage 4 stories

  • Kkmay
    Kkmay Member Posts: 89
    edited March 2020
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    Hi,

    I’m so sorry you have to face this. I wish you all the best.
    We have an appointment with her MO next week to determine her treatment plan. Her mets are mainly in the bones. She will have another PET scan to determine whether the nodules that are found in her lungs and cancerous. She is 66 years old.

    May I ask how often is the chemo with the immunotherapy?Are both via IV? Did you have see any improvement? Are there any side effects? And may I ask when did you find your mets?

  • RayneLanie
    RayneLanie Member Posts: 4
    edited March 2020
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    Hi!

    My mom (56 then) was diagnosed grade 3 tnbc stage 4 from the get go with lots of tiny mets on both of her lungs 2016 February. Non-BRCA.

    Got her first NED with 6xFEC 2016 August. Didnt do any maintenance chemo then.

    In 2017 May lung mets were back in both lungs again. No other place.

    Done 12 months really aggresive weekly taxol x carbo. High dose, as she could take it.

    She has been NED since 2018 April. Latest scan today still shows NED.

    Doing maintenance metronomic (low dose) chemo with oral endoxan. 2 weeks on 1 week off. Little to no side effects. Pet/CT every 6/7 months.

    We were scared out of our minds at first, but give it a couple of months. Like everybody says, its really scary at first but every onco we met said breast cancer is a very treatable disease now. New advencements are always on the way too.

    Take it one step at a time! 💝💝💝 Lots of hugs.


  • dlittkemann
    dlittkemann Member Posts: 91
    edited March 2020
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    Hi Rayne

    Your post helped me so much esp since your mom is also TNBC,as I am. I have bone mets only and started Abraxane and Tecentriq. Had 2 so far and will re scan in 3 mos to see if it’s helping. Praying it helps. Thank you for the uplifting and positive words. I saved your post so I can read it over and over. Thank you!!

  • dlittkemann
    dlittkemann Member Posts: 91
    edited March 2020
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    Hi Kkmay

    Found mine Jan/Feb. started treatment last wed. I go every wed for 3 weeks then one week off :-) I’m a bit tired. Few days felt stiff neck. Few aches. But all manageable! I follow a low carb diet and find it helps a lot for nausea. I have none. Too soon for me to say how it’s working. Won’t know for 3 mos. this is definitely easier than 2018 stage 3. Hit hard w dense dose ACT and taxol. This is much easier than that was. Hope this helps:-)

  • Sf2008
    Sf2008 Member Posts: 6
    edited March 2020
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    Hey ladies, I was wondering if you were able to keep your hair on the abraxane and tecentriq?



  • anotherone
    anotherone Member Posts: 550
    edited March 2020
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    Yes cold caps worked on abraxane.

  • kskier
    kskier Member Posts: 16
    edited March 2020
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    Greetings.

    Just went on this forum this morning for the first time in a while when I was reminded that St. Patrick's Days marks the 12th anniversary since the day I discovered the lump in my right breast while seven months pregnant and the mother of a three year old. Dx'd stage IV TN the following year. Son is now in high school, baby girl in middle school and I am a typical working mom from all appearances. I live with that devil always a part of me, and I work hard to keep the fear and evil at bay, but there is hope.

  • dlittkemann
    dlittkemann Member Posts: 91
    edited March 2020
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    wow KSkier needed to read that today. So happy for you!! So you did treatment. What kind? And you have been free of it for 12 years???? How often do you go for scans now? This gives me such hope. Thank you xox

  • dlittkemann
    dlittkemann Member Posts: 91
    edited March 2020
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    ...also where were your mets? Just curious. Thank you I’m advance. ((Hugs))

  • jobur
    jobur Member Posts: 493
    edited March 2020
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    Hi dlittkemann~ I am so sorry for the shock and fear, anger and depression you must be feeling at finding out you have stage IV breast cancer. We have all been there and it is a very hard time. I'm glad you found this forum though and opened a thread to reach out. There is great support here and lots of good information that you may not hear from your docs.

    It took me most of a year to work through the depression and despair that followed my de novo dx. I guess I am a slow learner, but eventually I made "get busy living or get busy dying" my mantra and have gone on to live a pretty happy life.

    As you work through this period, don't be afraid to ask your Dr. if you feel anti-depressants or anti-anxiety meds would help you. It can be difficult to find the right drug for you, so if one doesn't work well, ask to try something different. I found counseling sessions to be helpful too. You can say things there you might not want to express to those close to you.

    Do you know anything about bone mets? I am not an oncologist or radiologist, so this is just what I have learned in my 5 years of living with mbc. There are two kinds of bone mets, the kind that eats away the bone (lytic or osteolytic) and the kind the builds up an excess of bone (sclerotic or blastic). Most, but not all(!) bone mets due to breast cancer are lytic. In my 5+ years of scans, the lytic lesions have ONLY show up on MRI or PET, not on CT scans. If the bone mets are sclerotic, they will show up on CT. My experience was similar to yours in that only 1 or 2 mets appeared on CT, but MRI which was taken within a week or two showed mets in almost every thoracic and lumbar vertebrae as well as pelvis. And just to make it a little more confusing, when your treatment is successful and those lytic lesions heal, they tend to become sclerotic and will then show up on CT. So I don't think it's a case of you having a lot of progression in a short period of time, but rather the differences in imaging between CT and MRI.

    I hope the post from KSkier (great to "see" you again!) gives you a big shot of hope. I would add that there seems to be a lot of research being done on new and better treatments for TNBC. There is a big meeting of breast cancer specialists in San Antonio every year and I recall there were quite a few new developments in treating TNBC. I'll find and post the link for you later. Sounds like you may already have started one of those new therapies. There is plenty of hope.

    Jo


  • beatingbc
    beatingbc Member Posts: 24
    edited June 2022
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    Sorry to bother you, I find this updated site hard to manage. I am posting this message with regard to a recent post about blastic mets. I have searched and searched to no avail and really do not understand. I was on ibrance and fasoldex that failed. Now I am on Xeloda. However, there is not a lot of information on blastic mets. I started xeloda on the 27th of May. Same day I had a ct scan. Last scan was April 11th, with a pet. Just showed progession of iliac and a new vertebre. The ct scan results can in today and the person stated that I have blastic mets in axial skeleton and pelvic girdle. With regards to the axial does not state where. Is it all over or what?! My tumor markers for general is at 7.56 and ca 15.3 rose 15 points to 82. I haven't a clue what this means, but as we all know searching brings mixed results. I understand that blastic is an overgrowth of cells and that it is uncommon and prognosis is not good. I just do not understand and won't see the doc until the 17th of June, along with blood test and tumor markers again. WOuld be so grateful for ANY information, as you were referenced in a post for blastic mets. I was dx with er+/ her2 neg and on first cycle of xeloda. Thank you in advance for any insight. it is greatly appreciated! Blessings.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,063
    edited June 2022
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    beatingbc,

    It is unclear to whom you are responding (our threads don’t “thread”). The op hasn’t signed in since last August and jobur hasn’t signed in since April. The thread itself hasn’t been active for over two years. If no one else replies , you might consider starting a new thread as this issue is not widely discussed on bco. I have a single bone met which has been necrotic for over ten years and I have no idea if it was sclerotic or blastic. Also, tumor markers are not used by all MO’s because they are not accurate for many. I have never had tumor markers done. Take care