TNBC MBC Stage 4
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I actually joined this group awhile ago and never posted anything. I’m hoping to connect with like minded women living with MBC. I was first diagnosed in 2019, stage iiib; had the standard protocol, chemo, surgery, radiation.Cancer free for 18 months, recurrence in 2021, living with it. On several treatments through the years, did well for a while, now things changing, have lung involvement, pleural effusion, possible spread to liver. I am starting new chemo Eribulin tomorrow. I’m scared, will lose my hair again, I’m assuming won’t have good quality of life?
Anyone being treated with Eribulin? What are your experiences? I appreciate your support.
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@nonni2015 Hi I just wanted to lend support as a MTNBC sister. I haven't been on Eribulin but you may find someone here that can give you some info. Sorry you're dealing with progression I had lung mets also which have reacted well with Xeloda. I hope that Eribulin wipes them away forever for you. Ugh I understand about the despair if you lose your hair. I have been "lucky" not to lose mine again yet. Sending your strength and positive vibes as for tomorrow. Keep us posted.♥️
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@nonni2015 Hello. I have not been on Eribulin either but wish you well from one also with MTNBC. I hope that your first treatment with this new drug went well. Please do let us know how it goes.
Take care!
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@cookie54 How are you doing? Are you enjoying cool breezes on the water as we wind down summer?
@rlschaller How is the new drug treating you Rhonda? Recent posts in this group have 'disappeared' from my screen so you may have already given a recent update …
Hope that all are doing well.
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@nonni2015 Hi Nonni - nice to meet you. Welcome to the thread. So sorry that after 18 months you had a recurrence. What a drag ❤️ . I so understand! I think I went 6 months… but it was growing the whole time, we just didn’t know it until it pushed through my skin. I too did the chemo, surgery , chemo, radiation (2x) and ongoing changing chemo route.. and so it goes. I have not been on Eribulin, but it’s on my list of possible next steps when/if the navelbine stops working.
For hair loss, if needed, I highly recommend investing in a good quality wig. I did that when on Trodelvy and love my wig ( her name is Leah) . None can tell it’s a wig, and I feel beautiful (yes my ego cares).
For quality of life, you get to define that, don’t let others depress you or tell you if your life is a good life. You have so much power to choose the positive side of what a life presents . There are some things in our control, the progression of the cancer is not. So we do other things to enhance our quality of life, if we feel up to it. Sending you much light and positive energy to ease the way! ❤️🙏
It’s hard this human journey, but we all age and sicken, it just is the cycle, and, we all can laugh and love and look for the wonderful beauty around us too. Doesn’t mean we can’t complain and mourn what we loose, but celebrating what we gain in perspective is so important. Evolving in light, is how I see it .. I love my life. It is what it is. Striving for what I can’t have or don’t have, wishing it otherwise..I don’t know, it just seems like a waste a of energy. i don’t want to waste a moment of life, adapting to every day changes in body and mind is required, and staying close to what are small joys everyday counts for a lot. Anyway, sorry to philosophically comment … yes letting go constantly is part of it, and boy do we know how to live !. @scgal08 Rita the new medicine is so easy on me, only SE slight fatigue. I notice I don’t have the stamina I used to have lol.. gosh aging and chemo ! But I’ do my cardio and stretching and range of motion and pat myself on the back. There is a stage 4 thread here for excersise, and some of these gals walk 4 miles a day, swim and play pickleball! Lol I read, and cheer them on, and then do my YouTube 20 minute videos when I’m up to it… and shoulder excersise for the radiation scarring. I’m so proud I got my range of motion back. My MO lowered my navelbine dose due to my anc levels being low, but all is normal again. We are keeping our eyes on the Mets, last week they were redder, this week they are stable and less red and some nodules disappeared, but plenty are still there… it’s all so visible! Nothing new growing yet…hoping I can stay on this medicine for awhile, we’ll see. I’m adaptable lol… How are you doing? Are you still on Trodelvy? Glad you could post here again.
@cookie54 Andrea Hope with the summer coming to a close you are getting every inch of water and boating relaxation in. Hope Buster and hubby, annd MIL are well.
Bug hugs to all ❤️ Rhonda
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@scgal08 Welcome back! So glad you’re able to post again. What’s new on your end? Treatment treating you ok? Im doing ok thanks, absolutely enjoying this “life without humidity “ . Trying to boat as much as possible before the summer like weather is over. Been busy with appointments last week and back to the eye dr this week. My sight has been normal but then started with some lip tingling/twitching and numbness. Hoping nothing neurological is brewing. MO keeping a close eye on things.
@rlschaller How are ya? Glad your labs are back in normal range. Oh the lab balancing act can been such a nuisance! Sounds like you faring ok with new treatment and not too bothered by fatigue. May it continue keeping things under control. Hey 20 minutes exercise is better than zero! You are moving and that’s what counts.
Hi to all reading along and have a peaceful evening ❤️
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@rlschaller - thank you for your response. I appreciate it. I wasn't able to go through with the Eribulin treatment. This treatment is a push rather than a drip. Once the nurse started the push, I knew something was wrong. I started feeling a moving, warm sensation through my pelvis, legs tingling. I told her to stop. A bit later, sunburn feeling on roof of mouth, lips itch and tingling. So, an allergic reaction. I only had a small amount of the medication in me. I can't imagine what would have happened if I ignored my body's signals, tried to dig down past what I was feeling and told the nurse to continue…I'm assuming anaphylaxis, and that wouldn't have been good. I was given a Zyrtec and my daughter and I went home. Now, to discuss another treatment. I had been on low dose Carboplatin in the past and I may ask about going back on that. Honestly, I do not like IV chemo but we all do what we need to do. I have been off all treatment for two months due to dental problems and need to get back on asap. My favorite treatment was low dose oral cytoxan daily with methotrexate once weekly. I did that for over a year and that managed things well with barely any side effects and no hair loss! I had some progression so now I have to switch.
All in all I feel very lucky. My body has a persevering spirit. I need to trust I will find the right treatment that keeps things manageable and is within my ability to deal with any side effects.
Blessings to all -
Nonni 🙂
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@rlschaller Hi Rhonda. Your philosophical comments may have been directed to nonni2015 but I have taken them on too. Such wise words! I try to keep in mind that we are all trekking along in the same direction and that I am just on the accelerated plan. Perspective!
Good to hear that you are tolerating the new drug reasonably well. That is so great that you have your range of motion back, all due to your efforts! Hope that you can stay on this med for a while.
My stamina, yikes. I'm in the same boat. But I figure that if I can (and I do) chug along with the various workouts (around 20 minutes; sometimes longer, sometimes shorter) by my favourite YouTubers then I'm doing okay. My skin mets seem to be about the same. Last week the MO compared them to previous. For now I am staying on the Trodelvy but she is intending to get me into a clinical study, which isn't open yet but is in the works. It's not a study related to skin mets as yours was.
Is there anything new for you regarding another clinical study?
@cookie54 Hi! The Trodelvy treatment is going along okay. Boy, the fatigue though. We all know about that. I'm dragging sometimes.
How is your calcium status?
Goodness, I hope that the tingling and related symptoms do not turn out to be anything but glad that your MO is on top of the situation. Please do let us know how that goes.
@nonni2015 That is too bad that you had an allergic reaction to your new med but good that you caught it at the beginning. My favourite treatment was an oral drug too, capecitabine, which lasted for just over a year before progression. Hope that the next treatment is much better suited!
Take care all!
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Over in the thread "Are you currently (or have you been) in a clinical trial?", there was mention of two clinical trials that tend to work well with TNBC. They are the BRIA-IMT and STARt-002 trials.
Anything to do with TNBC catches my eye.
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@nonni2015 What a bummer that you had an allergic reaction. It can be such a let down but I love your positive attitude! It can be quite scary I had a very similar reaction to Taxotere. Glad you had a very early warning sign before it escalated any further. We will remain optimistic that your MO comes up with an agreeable plan.
@scgal08 Glad to hear of no progression on Trodelvy but happy to hear your MO has an eye on clinical trials. We all want them eradicated for good! My calcium is still on the low side. My endocrinologist ordered an ionized calcium level which is normal! So now MO said she isn't as concerned about blood calcium. So now my Vitamin D is very high lol. So now I have stopped that and endo wants that checked every four weeks until down to a normal range. Nothing very concerning just small annoyances.Thanks for asking.
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❤️ morning all, for those in the USA happy Labor Day.
Sitting with my coffee, and cat purring, breeze and sunshine through the window, lovely! Have the day off and it’s so nice to just sit and not get ready for work. Been super busy, the new semester started last week, am teaching 3 classes plus my AVP role… thank goodness I work from home lol. Fatigue effects my stamina in the body bit not the mind or the heart, so all is good. I meditate during the day when I get tired, which is super helpful. A 20 minute mindfulness meditation and I’m recharged. I start the day, mid day and end the day with a 20 minute practice. The fall weather is slowly beginning here and it’s amazing. DH and I have been going out for short walks in the park and before toy know it I’ve done 6k steps. Amazing.@nonni2015 how scary about your allergic reaction and how wise you are ! There is always another step to take and an appreciation of the moment as well. Keep us posted ❤️
@cookie54 the ups and downs of calcium and Vit D..it’s always something lol. Gosh, but love your attitude with these small annoyances. That’s actually how my MO described the skin Mets as annoying… I could live without annoying lol… but alas lol…
@scgal08 I too keep my eye on the clinical trials thread, what a great group share that is ! I read about those two you mentioned as well. I have high hopes for the tnbc trials, keep us posted on what your MO recommends for you. The treatments keep changing as they test more, I’ve been fascinated by the vaccines as well they are testing. Right now The Navelbine seems to be working, keeping the Mets in check, nothing else popping up. It’s been 6 weeks which for me is good !
Happy Monday band big hugs to all ❤️🥳❤️
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@rlschaller Morning, coffee cheers back at ya! We sure have been having some beautiful weather on the East Coast. I am also enjoying my favorite part of the day with a hot cup of coffee too. I so admire your drive and determination to continue to work. I know that doesn't come easy and I'm sure working from home is a huge help.Loving my Fall walks also, oh how I love life without humidity lol. Amazing how many steps you get in when walking and chatting. Enjoy this beautiful Labor Day!🌞
So I saw the neuro opthamologist on Friday and everything checked out well. He thinks maybe the eye episode I had was a strange migraine. Just to be thorough he ordered CTA Brain and Carotids to check blood flow and I will see him in October for additional eye exam. I don't really feel concerned since I never had a similar episode since July . However I will follow through and put this to rest! On another note, boating season is officially over for us. It's a bummer as we never seem to get to boat in September as something always interferes. This year it's repairs, oh well it was a fun season.Now looking forward to football season as it kicks off Thursday for the Eagles..GO BIRDS!
Hi to @scgal08 and all the lovely ladies reading along. Have a relaxing day❤️
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@rlschaller Good afternoon, also on Labour Day. It's a beautiful day and we hope for no more heatwaves. That is great that your meditation helps with the physical as well as the mental downsides.
Skin mets as mere annoyances? That's one way of looking at the situation! Good for you for reaching six weeks on the Navelbine!
@cookie54 We hear so much about the need for vitamin D, especially for those of us in northern climes, yet you have an elevated level. Who knew that could happen? Are you having the CTA Brain and Carotids soon?
Enjoy the rest of this holiday all!
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@scgal08 So the Vit D elevation was induced by supplements. Since I was having low blood calcium and needed my Prolia shot my endo had me double my intake for a month to combat having issues with Prolia. Well fix one thing and break another lol. Always a balancing act. I plan to CTA have it next week if there is availability Oh I just remembered there is a zoom tomorrow, right?.Wonder if I can attend on my phone..hubby asked me to take a drive with him tomorrow,however not sure what time.Have a restful night.
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@cookie54 @scgal08 @nonni2015 and all others reading along - good morning gals! It’s a beautiful almost fall like morning. 62 degrees ! So nice. Off to infusion today, still on weekly so will not be able to join the zoom..
Andrea - enjoy your drive with your hubby. And yes, so true fix one thing and another breaks lol.. it’s a balancing act for sure. Tweak this, shift that, try this, oops not that lol.. so important to keep a sense of humor and love life! Wearing orange today a bright lovely shade with a lime green sleeve linen top, feeling like a bouquet of fall leaves ! 🍁Went out to dinner with DH to celebrate his birthday and had a glass of sangria with my enchiladas- lol such fun. That’s it for the wine, but it’s so nice every once in a while.
Hugs to all Rhonda
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@rlschaller Hope your treatment went well today. I didn't attend today either, I had a horrible headache all day. Headache has lifted now, fingers crossed. Your shirt sounds like it was a nice cheery vibe, love it! It's like we can set the tone of the day sometimes just by what we are wearing. Happy belated BDay to DH. Glad you got to enjoy a nice sweet treat of sangria, cheers! Have a peaceful evening.
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@cookie54 @rlschaller @nonni2015 Hello! Just wanted to check in and wish everyone a good week ahead. The fall temps are beautiful here and such a relief from the heat.
I'm off to my Trodelvy infusion tomorrow; this time I managed to 'pass' my bloodwork.
Take care everyone!
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@scgal08 Hey there, thanks for the well wishes . Glad to hear your passed your labs, yipee! Hope all goes smoothly tomorrow. Yes enjoy the change in the weather, it feels fabulous here in NJ as well.
Good news here I had mt CTA Brain and Carotids and it was normal. So one last visit in October and I can hopefully put this to rest, fingers crossed.
Hi to all here, hope all is well❣️
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@cookie54 What a relief re the normal results from your tests! One fewer thing to concern yourself with once your October eye exam is done. We hope for and wish you good news on that.
@rlschaller Will your Navelbine infusions continue weekly for the foreseeable future? Sending you good vibes for tomorrow’s treatment!1 -
@scgal08 Thanks, appreciate your well wishes😊
@rlschaller Thinking of you,hope all is going smoothly and you're enjoying teaching again. May your SE be minimal so you can fill your days with things you enjoy❣️
Wishing everyone here a peaceful day.
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Hi gals @cookie54 @scgal08 @nonni2015 and all who read along - what glorious fall weather ! Cooler temps yet still upper 70s and sunshine. My favorite time of year. Happy to read about good test results and labs ! These small victories are huge lol. I love the idea of small steps many times, small joys to savor, one test at a time.. one infusion or pill.. at a time. ❤️ the world of chronic cancer . Really teaches you about being present in ways that are not just philosophical. The leaves are turning a bit here, the birds are singing, I’m drinking a morning coffee. Joy.
And I’m teaching a full day workshop today on zoom ! I am so busy , it’s week 3 of the new semester . But finding time for short walks around the park we live next to has helped, it’s my new routine. And with my new fatigue, the chemo after almost three years has caught up with me… it’s purposeful to move . And lovely.This week my MO will decide if I stay on Navelbine, not sure since my Mets have started growing again. She called it a mixed results, some are better and some are worse. And they have started to be uncomfortable, sensitive and sore. @Rita I remember you mentioning that a while ago, Im. now experiencing that too. It’s always something! Will keep you posted. Going for a bone density test on Monday for a baseline there. Meanwhile it’s a beautiful day and a beautiful life and I’m happy. Love teaching so off to prep now. Hugs to all and know you are loved! ❤️
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@rlschaller Glad to hear you are enjoying the things in life that make you happy! Agree it's so important to try to stay present at this stage as it's not a sprint but a marathon. Bummed that you are having discomfort with these darn skin mets! We all wanted you to have total success with Navelbine sometimes it's such a challenge to get there. I am remaining optimistic that your MO will put together a successful plan. I will continue to pray for your strength and healing.❤️
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Evening all, went to see MO today and no infusion, Mets have grown redder and more lumpy. I was not surprised, my DH always comes with me for infusion, and told him to stay home today as I didn’t thin k I would have infusion.
. @cookie54 Thanks Andrea for your prayers and well wishes - yup she’s thinking up a new plan. Navelbine is officially over ! I go back in 3 weeks for whatever is up next. She wants to confer with my MSK Mo before deciding. So a drug holiday for 3 weeks, and hopefully Mets don’t grow too much in the interim lol.. , I’m ok. Was a little overwhelmed at first to have it confirmed that we need to switch to either one of two remaining drugs or a clinical trial , but I’m up for what is next. Kinda hoping for a clinical trial so we’ll see what MSK has to offer.
@scgal08 Rita do you know what clinical trial you will be applying for yet? Was thinking about you today. Hope all is well, let us know how you are when you have a moment, if you feel like it. Sending you hugs and love for wherever you are in this journey!
This is the life. Accepting what is and filling my heart and spirit with love. My body I have no control over, I remain a candle for others and infuse my mind, heart and spirit with love and the absolute consciousness. That is my way. And it grounds me in hope and joy. Wishing all blessings, life’s goodness and a lovely evening.0 -
@rlschaller Oh Rhonda, that is such a shame that the Navelbine has not worked out for you. You've had so many treatment changes! I'm so sorry that you are being bothered by those nasty skin mets. They are a trial, aren't they. We hope for a clinical study that suits your case.
Kudos that you are able to continue working in the midst of all this 'stuff'. Cancer fatigue is a bear. It seems though that when you least feel like getting up and moving, that's when it is helpful to do so.
My skin mets too are not by any means going away. Sometimes they are a bit sore or itchy, though not a lot, mercifully.
The drug in the clinical trial is another antibody-drug conjugate, called disitamab vedotin. I haven't heard any more about the trial, though I do see my MO Monday and hope that she has further information on it then. It still wasn't open, last she said. The Trodelvy is hardly knocking it out of the park, so maybe she will be inclined to get me into the study sooner rather than later, if possible.
I'm feeling pretty good on the Trodelvy, other than the fatigue. The wonders of all the pre-meds and support meds.
@cookie54 How are you doing Andrea?
Wishing everyone well!
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@rlschaller Rhonda you are such a beautiful peaceful soul and I so admire your bright spirit. I'm sorry to hear your skin mets have been such a thorn in your side. As you know MSK is a fantastic facility filled with a wealth of knowledge and hope.I will be praying that they have a trial that fits your cancer.In the meantime is there anything to provide you comfort from the pain and itching? I know you must be anxious to get rolling but I also feel you will possibly enjoy a short break. I hope you get to enjoy some beautiful Fall walks with your DH. Hugs.
@scgal08 Rita, I'm so glad you and Rhonda are able to support each other bring in a similar situation. Glad Trodelvy has been an "easier" drug for you to tolerate. Hope you get some insightful info Monday from your MO on your mixed results.
So I'm doing ok thanks. No new odd symptoms have surfaced lately so that's a win! My Vitamin D came down so I will slowly introduce that back in. I'm off to the MO today for the usual monthly visit. Will probably be time to time to scan Chest/Abd-Pelvis soon we stretched it out a little.Most of my stress lately has been with my mil as she continues to decline. We had a family meeting with her this week and we are talking hospice care for more support. She really doesn't have a life ending disease but should qualify from her failure to thrive.Nothing has been decided yet dr wants to get a couple in home test before decisions are made. So as Rhonda said this is life and we take it one step at a time leaning on faith or whatever is your support. She has lived a full life of 87 years so what more can you ask for.
Hi to all here and sending love and hugs.
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Hi ladies I received permission from mods to share this opportunity if anyone feels up to it. It's a MTNBC paid survey through RC Horowitz research company. They are a legitimate research company that I have participated with in the past. Figured it can't hurt to share. Hope everyone is well, have a peaceful night,
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Hi all. For the sake of consistency, can we continue to use this thread, not the older "Triple Negative Stage IV". The latter is also where my "Leave a Comment" box disappeared, though it seems to be reinstated. No idea what that's about.
Cheers!
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❤️❤️❤️ you bet. So glad you can comment here.
I just spoke to the marketing firm you recommended cookie - looking forward to participating. I hope our experiences help develop new drugs !Happy Friday all. 🙏🍹
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Of course Rita, glad it works for ya!
Rhonda, That's always the hope, there can never be enough!🤞
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Fall is here ! The tree outside our living room window is turning a little orange, so nice. This last Saturday we went out to dinner, the kids came down to celebrate DH birthday and the Jewish New Year a little early… we had such a nice time. Hope everyone is doing well. ❤️
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