Triple Negative Stage IV
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hi all, hoping to give this thread a bump . How are you, TNB and stage 4 gals doing? I did not know this thread was here, would love to hear from you. It’s a journey of 3 steps forward 2 steps back I’m finding. Recent scans showed a New 1 cm FDG avid prevascular lymph node which may represent nodal metastasis and the radiologist recommended attention on follow-up imaging. MRI was NED. Seeing the MO on Friday to see what he recommends, if we watch it for awhile till next 3 month scan, or change meds now. I know there are two more meds we haven’t tried yet. This entire year of being MBC has been one drug after another for a few months, would love a year run in something stable lol. But it is what it is, I feel good and am hopeful.
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@rlschaller Glad you gave this a bump, I feel like there aren't many of us out there. Sorry to hear about the new node on the PET. I wonder if MO will want a bit more proof of met since MRI was NED. Of course I know I always feel like lets get right on this, it's hard to be patient sometimes. Although we both know we don't want to run through our lines of therapy either. Are you ok with waiting until next scan? Sorry it's been a rough year for you. When is your follow up with MO? Keep us posted on things. Sending you strength and good vibes. Glad to hear your hopeful attitude. I see you on other threads and your always upbeat which I admire.
I have been blessed that Xeloda has been holding me stable the last 2 years. It's such a mind game, I try not to live from scan to scan but it's not easy. Grateful but often wonder when the change will happen.
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@cookie54 thank you for responding here lol.. we are on some other threads together, and I love how you are so supportive and upbeat as well. I am positive by nature, and feel good most of the time which helps. I have noticed that as long as I feel good, It is easy to be upbeat. I know a lot of gals do not feel good, and that is a much harder road to walk. It is not easy dealing with uncertainty.
I post often on the other TNB thread, as you do. But it has gals mostly still in stage 1-3 and they are looking for it to be over soon. Hard for them to relate to my stage 4 constant change in treatments, and I don’t blame them. It’s different. I’d love to keep this thread alive for us and others. Living fully day to day. Small joys and lots of love keep the heart open.
I see my MO on Friday, 3/14 and we’ll see what he thinks. And yes, the impulse to know and act is an autopilot response, and yet I am really fine with wait and see. My sense is that it is treatable, whatever it is. I was just diagnosed with arm lymphedema and wonder if the node is related to that, as breast and arm, and armpit are swollen.
So much is out of my control, except for my attitude and my mind, my thinking, my emotions. I can control my mind as it responds or at least witness my responses with calm and compassion. I meditate and that helps so much, I could not imagine going through this without a contemplative practice.
But it is nice to share and get support, it is always something on this cancer journey, thank you. I don’t like burdening others with what I can manage, but so like listening and sharing with others who have similar challenges and opportunities. I’ll post an update when I know more.
It is awesome that Xeloda has worked for you for 2 years! I am so happy for you. ❤️ thank you for the strength and good vibes 🤗 same back at ya. - Rhonda0 -
@rlschaller Thanks and I agree with it being out of our control. Love your attitude and that makes a huge difference! Like you I don’t like to burden my family and friends with every little thing so i pick and choose most of the time. So glad we have this community to vent and unload.
Hmm i do wonder if that node is related to the newly diagnosed lymphedema. Be interested to see where it’s located and its relevance.
I feel similar to you about the TNBC thread. I do occasionally comment on there, but I also feel like we are in the same world but different situations. I don’t want to bring anyone down who is early stage because they are very curable! So I do follow along, as i like to see how everyone is.
Hope your having a great day🌷
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@cookie54 Good news. MSK MO thought the node was no big deal. PET looked good and MRI was clear , he was happy. Normal ups and down of metastatic disease , some cancer will show and disappear. Nothing unusual, skin thickening is radiation result and nothing as well. Happy cancer is still local for me and not anywhere else in my body or breast . Do have new skin Mets under the arm though, but confident radiation to the skin will get rid of it. I Had a terrific response before to radiation for the skin Mets , this cancer responds well to radiation. So radiation is next, and then staying on Carbo taxotere , which is my current line of treatment after radiation. He called my RO while I was there to confirm and my MO at Northwell. He also ordered a punch biopsy next week so he can study the genetics of the Mets . So feeling relieved and reassured.
Was a nice day afterwards. Had the day off, so Went shopping at Macys at 34th street, out to lunch with DH, and out to dinner with friends. One day at a time, small joys. Hope you have a lovely weekend.To all the stage 4 TNB gals out there, big hugs ❤️
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@rlschaller Well this news is totally starting off my day the right way! I'm so happy and relieved for you that things are holding pretty stable and local. So onward and upward you go, Rads and continue treatment. yes peaks and valleys all the time but we celebrate every small joy for sure! Sounds like you celebrated with the people you love, shopping,lunch, dinner, perfect!
I see you are with MSK I went to Tiffany Traina there for my second opinion, she is fabulous. Glad to hear you have multiple docs onboard to. It comforts me to know I have multiple talented docs to refer to for next line therapy etc.
Have a great weekend also🙌
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Thank you @cookie54 ! ❤️
Good to know you also went to MSK for a second opinion, thanks for sharing her name. I’m seeing Dr. Pedram Razavi, who I originally went to for a second opinion and stayed with as a consultant on my care. So glad you have multiple docs as well to turn to as needed.
TNB and MBC are complicated, and it helps to have a deep bench lol.. ( a little sports metaphor) .. Happy Sunday.1 -
Hi All , iam.very tensed about my mom situation don't know if she is tnbc or her2 low she was treated.for.luminal b during her primary breast cancer in 2022 .now she has liver met with er negative pr 4 postivtive and her2 1+ .she only has liver met . What does.her prognosis and treatment. Look
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@rlschaller Hello, I read with interest your mention above that you will be having radiation on new skin mets, apparently not your first radiation for that. Being in somewhat of the same boat, with recurring skin mets in the same area, I'm wondering if one can get radiation again where one has had it before. However, yours does sound as though it's in a different spot this time. I had figured that it was once and done for radiation.
It's interesting also that you said that this cancer responds well to radiation. Do you mean TNBC in general?
You seem to be doing well, amidst the ups and downs!
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@gaurykris im sorry to read about your moms diagnosis. From reading your description, it does not sound like she is triple negative, as her pr is +. Her medical team is the best source of information for type, grade and stage , as well as treatment options. Staying informed on the choices she is offered is key. I like researching both the Mayo Clinic, Memorial Sloan Kettering, and here on BCO for links and information on diagnosis and treatments and side effects. I personally ignore prognosis myself, as those are stats and median averages that could flavor my mind which I don’t find helpful. Every body responds differently, and we aim to live fully , as best as we can …one day at a time. Which is good advice for everyone, as everyone has a life span that ends some day.
Medical opinions are best left to the medical experts, in my experience. However, what you will find here which is excellent advice on how folks experience these treatments, the adjustments they make with life style medicine to mediate side effects, and best of all the loving support we offer eachother as we go through treatment. Giving advice on what questions to ask, and alternative points of view to creat a happier and calmer journey. But still making space for rants and strong feelings.
You might find the liver Mets thread helpful, and the MBC caregivers threads and zoom room for MBC caregivers.I hope this helps. ❤️ hugs to you and your mom.
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@scgal08. nice to meet you ! Welcome. I don’t meet many skin Mets gals, so nice we can share. Yes I’m doing well with the ups and downs, would love to get this under control. We get it and it pops up someplace new. Every body responds differently though, which we know. The chemo I have been on never lasts working past a few months ! The radiation was a success story though. My skin Mets on the right breast had a complete response so far to the radiation , and I was told that could happen. It’s not a guarantee of course. My new skin Mets is right above the radiation field under my arms pit now, and to the right going up my shoulder, and a spot on my side towards my back. So they will do skin radiation, 15 treatments for 4 days a week to the skin using a boulous (sp?) which is gel mask they tape down. Did you use that too when you had radiation for your skin? Did they do whole breast plus skin ? That is what my first radiation was, a combination. But yes, this is outside the first radiation field.
My MO said you did not typically radiate the same place because it can cause serious side effects of ulcerated skin. They typically try a new chemo medicine with a recurrence of skin Mets. Has that been your experience? If you don’t mind sharing, are you on a treatment plan now? I hope you are doing well. Live is full of joys and sorrows, wishing you more joys…. ❤️1 -
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@rlschaller thanks for detail post right now Dr has asked her to start with xeloda.i wanted enhertu but he prefer xeloda first. I see you also used xeloda ,how's was the side effects during her primary , chemo did not reduce the lesion size
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@rlschaller Thanks for your reply and the benefit of your experience. The skin mets (around my surgery incision) are what actually alerted me to my cancer recurrence two years ago, though I was shocked when the skin goings-on turned out to be cancer, again, especially being on the same side as previously. During radiation they used a bolus to cover the chest to direct the most radiation to the skin. An enlarged lymph node under the arm on that side was also targeted. So yes, they did the whole breast plus skin. The new skin mets is over the radiation field, plus around it, and it seems to be creeping over to my side too.
I've been on capecitabine for a bit over a year, though that is likely coming to an end pending scans next week. Next up will be either Enhertu (because I'm also HER2-low) or Trodelvy. The kicker is that you can't get them sequentially here, only one or the other. My MO says that she thinks that there is no right answer as to which one to choose. Talk about being between a rock and a hard place!
That's great that radiation has worked so well for you.
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@gaurykris Xeloda is a very good drug. There is an excellent thread here on Xeloda, you or your mom might check it out. Also @cookie54 has been on it for years now, and will be able to chime in too. My SE on Xeloda was basically extensive peeling of the skin on the soles of my feet , and a bit on my hands and fingers. Which in all honesty I hated. I also don’t like taking pills lol.. but in retrospect it was relatively easy to apply the creams for the peeling. Whatever works to keep the lesions stable is really the name of the game managing chronic cancer. Sometimes they shrink, sometimes they go away, and sometimes they come back. It’s a cycle of step forward and step back, step forward again…it does take some getting used to. ❤️❤️ Some days I’m fine with it , and others not. It is what it is, and I remind myself to live joyfully and laugh often, love each day as I can. Good luck ! I hope this works for your mom for a long time.
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@scgal08 i hear you. Those darn skin Mets ! My MO has added low dose Carboplatin to the radiation, which he feels is why it did so well. I went in for the mapping CT on Friday, and the therapists techs were FaceTiming the physicist as they were wiring the nodules for the scans. Mine has also spread to my side out from the breast, so the new field is complicated. A bit of shoulder, axilla , underarm and side. They cut up 4 little bolus pieces for each area. They made a mold of my body so I can be held still when they start with my arm akimbo (bent on an angle).. much more intense prep then the first time. Lol… I hope nothing grows too much while I wait to start.
After my recurrence, I was on Enhertu first for 6 months, and then went to Trodelvy. I chose Enhertu first cause it was a better treatment schedule, every three weeks and the SE did not include hair loss lol….ultimately it stopped working for me, Trodelvy did better on the internal tumor and skin. But eventually my skin Mets started growing agin…fingers crossed yours calms down !,, My MO also said it was a toss up which one we did first. Good news is you can try one , and stay with it. And switch if you choose or have to. Options are great to have! Let us know which one you go with. ❤️
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@rlschaller right now it is not finalized yet she did bile stenting so once the liver is ok.they might start iv chemo . How was carboplatin experience
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@scgal08 did I read your post wrong? You can’t do both Enhertu and trodelvy after or Vice versa ? Only one and done? Hmmmm.. wow hard to choose then. Both worked for awhile for me. If you want a second opinion to help decide, both @cookie54 and I went to Memorial Sloan Kettering doctors for second opinions on the treatment plans. Perhaps they do telehealth if you are not in the area… just a thought. ❤️
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@gaurykris I find the Carboplatin to be relatively easy. My body manages SE pretty well, though that is not the case for a lot of gals. It’s really very individual. My SE are occasional light fatigue and feeling flushed. I’m on a low dose to help boost the radiation, so I hardly notice it. My original Carboplatin was in combo though with taxol. Which is a stronger chemo, but in combo works well on tumors. On that combo I had 3-4 days of fatigue and low appetite, hair thinning, and small rash on my hands. Hope the bile stenting works ! ❤️.
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@gaurykris Hey there saw you were inquiring about Xeloda as rischaller said there is a great Xeloda thread on here. Thankfully Xeloda has been holding me pretty stable for a little over 2 years now. I have had several dose adjustments to help me deal with the hand/foot syndrome. Typically the MO starts you on a higher dose then decreases if necessary. Hope your mom has great success with X.
@scgal08 That's interesting about not doing Trodelvy and Enhertu in succession. When I was diagnosed Stage IV TNBC my first 3 plans were Keytruda/Xeloda, then Trodelvy and Enhertu. I am still on my first plan so I can only comment on what I was told initially. Not questioning your MO just wondering for future treatment plan. If you are looking for second opinion, I went to Tiffany Traina who specializes in TNBC and is involved in research at MSK. My MO and Dr Traina came up with my treatment plan together. . Sending good thoughts for stable scan this week and your decision for treatment. Hugs.
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@rlschaller Thank you for bumping up this thread.
Your radiation plan does sound rather intricate. Do you have a start date yet? Although you are not new to rads, one thing that may be helpful would be to line up some physiotherapy for during (if allowed) or after you are done. I had a lot of arm/shoulder pain right from the first treatment that the radiation therapist told me was due to positioning. And I 'only' had five treatments, not your 15!
Good for your clear MRI. And darn regarding the new lymphedema. Is treatment for that being worked around your radiation timing?
I am sorry that your run of each chemo drug has been so short. That must be hard on the psyche; speaking of mind games!
To you and @cookie54, where I live both Enhertu and Trodelvy are covered, with the caveat that you can only get one of the two. My MO said that they have not been compared nor used sequentially. She did favour Enhertu at first due to the impressive improvement in survival compared to other chemos, but then acknowledged that the number of ER/PR-negative patients in the study was low. So the impressive results could be due to less aggressive disease in that population. On the other hand, because Trodelvy was studied specifically in TNBC patients, with more aggressive disease, possibly that's why improvements were smaller.
I just looked up Dr. Traina. Being in another country though, I don't think that I could consult her. Having someone in your corner who specializes in TNBC would be great …
Have a good day all.
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@cookie54 .that's great to hear so my mom had bile stenting liver enzymes are improving she has a big 7cm and 1 cm lesion on her liver her2 low pr positive er negative so it's almost triple negative .now Dr has asked to wait one more week for chemo to start.he wants her let to get more better.
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@gaurykris Fingers crossed she is well enough to start soon.
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@scgal08 thanks for the suggestion of physiotherapy. I’m will be seeing a Lymphedema PT specialist starting next week for a month, And as the treatments will overlap with radiation I will ask her about excersises. I know both massage for lymph drainage (yeah) and exercise is part of the plan. I am told I don’t wear the current swelling reduction sleeve during radiation, but they will be at the same time. Sorry you experienced arm and shoulder pain , I hope that is resolved now. I find I can do anything and adjust to anything when I feel good. And luckily that is most of the time . I don’t have the rads schedule yet, I hope to start towards the end of the first week of April. I’m lookin forward to it lol… I want to get rid of these skin Mets if possible. We’ll see ! And yes, training and taming my mind to face what is here and be positive and do what I can, and let go of the est , not worry about what I can’t control… has been a big part of this journey. I meditate, and that is super helpful.
Tough choice between the two drugs, pros and cons for each. Gals do well on both. For me, Trodelvy worked better on the tumor dissolved it and most of the skin Mets. As cookie said I’m sure your team will help you pick, and we are rooting for you ! Keep us posted.
I’m so glad we all can share here. TNB and mbc has its own particular road to travel.@cookie54 @gaurykris wishing you and @scgal08 a great day ❤️ I have the day off from work , infusion of low Carbo today. Off to the city for lunch first with DH, then a walk in central park if it’s not too cold.
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Hi all! We wanted to let you know we're hosting a special virtual support group for Stage IV TNBC this Friday, March 28 at 4pm ET. We hope you'll join us!
Register here: https://breastcancer-org.zoom.us/meeting/register/eOskYtaRTfikQ8tAItFeLw
—The Mods
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Hope everyone is having a lovely Sunday.
The zoom meetup the mods mentioned above was wonderful. @cookie54 (Andrea) and I were both there along with other gals who are , like us TN and MBC. They might do it once a month, Hope if they do you gals might join . Andrea - it was wonderful to meet you on zoom. Sharing live on zoom has its special place , and it was nice to actually see you and hear you lol.Had a biopsy on the skin Mets on Friday, and I start radiation on Monday will keep you posted how it goes! Hugs to all. ❤️
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@ rlschaller @cookie54 my mom is eating little better preparing for chemo. Will let you know how it goes now what she has is liver mets
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sounds good @gaurykris . Wishing her and you a smooth and SE easy treatment start. ❤️ there is an active liver Mets thread here, you might find helpful too.
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How did the skin biopsy go is it still.triple negative
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