Triple Negative Stage IV
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@scgal08 Oh I’m so glad to hear you received treatment! Fingers crossed that labs are good and there aren’t anymore lapses in treatment. Ugh yes seems like everyone has been dealing with high humidity. I think by the 4th humidity is going to break. I love my YouTube workouts I prefer to do it at home rather than going to a gym. So thanks for asking about calcium, so no improvement with doubling my intake. I will be due for next Prolia in November .I plan to message endocrinologist to discuss getting my Dexa and a possible change. MO says keep an eye on symptoms and report any worsening.
Stay cool girls and have a good day❤️
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@cookie54 Staying cool here! Assuming that you're referring to your low blood calcium, what symptoms would you be on the lookout for, as per your MO?
This morning's bloodwork looks good for Wednesday's chemo. Unfortunately it's scheduled for the same time as the BCO virtual support group that day. Too bad!
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@scgal08 Yes blood calcium, muscle cramping,tingling and numbness around the mouth. MO and endocrinologist said to call if I start with numbness around my mouth.I was getting muscle cramps and muscle fatigue,seems to be better now. So we'll see how it goes.
Glad your bw looks good today! Bummer that there is conflict with the meeting Wednesday. I'm not sure if I will make it either on Wednesday. We help care for my mil so we will visit her on Wednesday since we will be away for the 4th. Hope you are feeling well and all goes smooth on Wednesday. Hugs.
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@scgal08 so glad your labs are good and you’ll get your Day 8 treatment. Hope it’s a smooth infusion and no SE. Sorry to miss you and @cookie54 tomorrow. I was looking forward to seeing you both ❤️ . Sorry cookie that you are dealing with low calcium and its effects.
The body is full of surprises and invitations for change! Hope the numbness does not occur! Keep us posted.
@tougholdcrow thanks for the article link. Yes, it is exciting. The trial at MSK is only phase 2, so considered still investigative for the right dose.
Hope everyone is staying cool in this continued humidity, if it effects you in your location.
Hugs to all.1 -
@cookie54 Those seem like rather strange symptoms, re the low blood calcium, but I guess that we should not be surprised by anything that crops up in Cancerland! Hope that you do not get numbness and that the condition rights itself.
@rlschaller How is your arm range of motion these days … and your nail concerns? Good that you can do your workouts!
Thank you for your kind wishes, and the same back to you! Enjoy your long weekend.
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Happy Friday, and hugs to all! Missed you at the Wednesday zoom meet up, it was lovely. A new group of gals came, I think there were 6 of us, though I could not stay longer than an hour due to a work meeting .
My nails are hanging on … literally. So far so good. Amazing what we adjust to. I remind myself, this is my life, and it’s ok. And ignore the little inconveniences. Onwards lol! @scgal08 how are you skin Mets, have they stopped expanding ? Mine seem to be stop and go. My arm Mets seem to be drying up, but the side back ones expanding… taking it day at a time.
@cookie54 hope your symptoms of low calcium are better. This is probably not helpful, it I’ve read that leafy greens as smoothies or juice might help? Just passing this along…
DH and are going into the city tomorrow to see Gypsy on broadway and then put to dinner. Looking forward to it. ❤️❤️❤️
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@rlschaller Oh nice to hear that more women joined in! Hope to make the next one. Ugh sorry to hear the back skin mets are expanding, so frustrating I’m sure. Agree, you are doing all you can and taking things one day at a time is best. Hoping your a candidate for the clinical trial. Hope you enjoyed the show and a delicious dinner. I’m always open to suggestions, thanks! Unfortunately I am on a low folate diet to keep my hands and feet from flaring up with Xeloda. Boy do a I miss dark leafy greens, so I have to pick my poison lol. So far so good no progression of symptoms.
@scgal08 Yep cancer is always full of surprises isn’t it and we keep marching on! Hope you are feeling well enough to enjoy the weekend.
We had to cut our weekend short due to my mil being hospitalized yesterday. She has multiple pulmonary embolism’s and couple DVT’s also. She’s 87 and essentially has been giving up on life lately. Between crippling arthritis and being pretty much home bound she is tired.So we are all going to take it one step at a time and support her best we can.
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@cookie54 sending much love and light to you, and your family. I am so sorry to read about the struggles of your MiL. Sounds like you are doing all you can for her. ❤️❤️
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@rlschaller May I borrow that line, "This is my life, and it's okay." That covers a lot of ground.
My skin mets don't seem to be improving all that much. They are also a bit sore sometimes. I've had three cycles of Trodelvy now. I don't know if it's too soon to judge its effectiveness. I'm seeing my MO this Thursday so we'll discuss. She has taken pictures of the mets for comparison's sake. The things that we have to subject ourselves to …
Would that your skin mets would stop, and leave off the 'going'! Are they painful at this point?
Nice that there were new gals to meet on the 2nd. I hope to attend the next one.
Your Broadway show and dinner plans sound like fun! Any big names in the cast?
@cookie54 The low-folate approach would be difficult for those who like their leafy greens. I heard about it while on capecitabine but didn't try it. Hope that it continues to work for you. Pick your poison indeed.
I'm sending you and your family good wishes in dealing with your MIL's troubles.
Have a good week all.
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Thanks ladies , appreciate the well wishes for her. I hate that you both have to deal with pesky skin mets but so glad you have each other to lean on. Hugs to you both💕
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hi gals
, @scgal08 Rita give it time, maybe they will start to shrink. Sorry they are getting sore. Fingers crossed they start to respond.Let us know what your MO says. My Mo takes pictures too to compare, Both of them do. And I also take pictures lol… I never remember from month to month, I actually like having the record in a strange way, and also don’t …They have changed so much over the year and half , they come and they go. But Mine are definitely growing more each day now, the doxil is not working unfortunately . They are not sore though. I took pictures this morning and sent them to my Northwell MO, and her Np called me immediately. They ordered a new PET scan for Monday hopefully, and we’ll see what is the next step in the plan, they will try to figure out what todo. I meet with her on Wednesday and maybe I’ll have the 3rd Doxil infusion while they think it through or she’ll recommend something else. I knew we’d have to change, but they grew so much I also sent the pics to the MsK mo, so they could confer. ❤️ so I’ll keep you posted. This is the life we live !
The show was fun, but not great. Audra McDonald was the star, though she had the night off. Her understudy was spectacular though. The story was Kind of dated, but the voices were lovely. And dinner after was superb. We went to a Mexican restaurant and I treated myself to a classic Margarita ! Love going out to eat lol.@cookie54 Andrea oops about the greens ! I eat so many I forget you couldn’t eat them. I belong to a CSA and get a half share farm box each week. I love Tuesdays mornings when the box comes. Tomorrow is beets and green beans and apples, and kale and mesclun lettuce and garlic… I forget what else. Last week I added an orange marmalade with cardamom. My appetite is low, but I love to eat.
Hugs to all ❤️❤️❤️❤️ stay cool and wrap yourselves in love and light for all that life asks of us.
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@rlschaller I am so sorry that your skin mets are not receding. Do your oncologists say that you have been on Doxil long enough at this point to see some improvement? Having the expertise of two MOs to draw on must help, so that between the two of them they may come up with more suggestions.
Are you still finding the Doxil tolerable?
I hear you on the photographic record of the skin mets, regarding wishing to have a record or not. My head-in-the-sand move is leaving that part to my MO, because I don't like to look anymore. The mets have gone way beyond their appearance at the start.
Dating myself, I remember the movie Gypsy with Rosalind Russell, although not from when it was first released!
Your CSA box sounds like a real boon, especially if you can choose what you will be receiving. Generally they are farmer's choice, at least here.
Please do let us know what comes of seeing your MO. Is that Wednesday of next week, not tomorrow, so as to be after your PET scan?
Take care everyone!
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@rlschaller Wishing you all the best Rhonda on your PET scan tomorrow, and hope that a plan is in the works.
Take care!
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@scgal08 thank you! So sweet of you to remember. I don’t mind the scans, I like knowing what’s going on “under the hood” though I don’t always understand it. Things that worry me, the MOs think is nothing, so I try not to overthink it. The scan itself is relaxing, love lying there counting my breath over and over, it’s very chill. And I take the day off from meetings which is so nice… just emails.
I met my Northwell MO last week, and she paused the Doxil, the Mets are pushing through it so she is thinking about what is next. She is waiting on the results of the PET to decide, probably move to Eribulin, but we’ll see... She spoke to MSK MO, who wants me on the skin Mets trial. He reached out to them and I’m on the waiting list for an openslot. They called me on Friday. The only wrinkle there is I can’t be on Doxil after all, it is not an approved drug to be concurrent with the trial after all. Eribulin is ok, so once it’s decided a plan will be made. So many moving pieces lol. So glad I’m flexible. I should learn more next week, I’ll keep you posted.How are you doing ? Big hugs to you and Cookie.
@cookie54 how is the mighty boating summer adventure ?
Happy Sunday all ❤️1 -
@rlschaller Well, good that you are that much closer to taking part in the trial. Here's hoping that a slot opens up for you. Are you daunted by yet another drug change?
I'd think it would be next to impossible not to overthink one's situation!
I'm in the same boat in that the skin mets are increasing. This is after three cycles of Trodelvy. At last week's follow-up with my MO she said that she is not yet "calling it" with that treatment, but that we should be seeing at least some stability, if not improvement at this point. As she said, "But with your type of cancer …". Yes, we know that TNBC is aggressive. The last treatment of the third cycle was a 100% dose, so I've at least gotten over that hurdle. I'll have one more cycle then a CT on Aug. 1st.
Hopefully you will find out more in what sounds like a busy upcoming week.
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@scgal08 sorry to read you are in the same boat and your Skin Mets are growing too. It’s so frustrating I know. These darn skin nodules! Hopefully now that you are on the full dose of Trodelvy you’ll see some improvement. My MO says the skin is tricky, it goes away fast and grows and increases fast, so hard to predict. Glad you are on 100% dose though, and do you feel ok? I hope it makes a difference! They just don’t have a good drug yet for skin Mets , hope your Aug 1 scan shows the body is stable! ❤️🙏❤️
Had my PET/CT today, once those results are in my MO team will decide the regimen. Probably start something new this week or next week. I love my medical team, and I trust their judgment, so I’ll wait and see. Changing drugs so often, yes It is daunting, but it is what it is. I’ve never gone more than 6 cycles on a drug since MBC, and that was Trodelvy back in 2024. My Mets always push through. They respond to radiation, but then pop up someplace new. No one has an answer, so we just keep trying . I’m hoping that one of these days they will come up with a combo that works for us.
But for now, I’ve accepted that my C is resistant to most therapies, and we got to keep trying until we hit it right. So I make space to have my feelings, I cry a bit, acknowledge i wish it was otherwise then I laugh a bit, and acknowledge non striving and trust in the present is more healing… and am grateful that I feel so good and have love in my life… and then I research the SE of the new drug and wish it to be the last one… lol.
I will let you all know when I find out more. Hugs.1 -
@rlschaller @scgal08 My heart is heavy knowing that your both struggling with these skin mets. Rhonda prayers up that you get in this trial and that Eribulin will be the final drug to out once and for all! Fingers crossed that the PET is clean and stable. Rita I'm holding out hope that Trodelvy is combating these skin mets as we speak. Hoping that this last full dose and the last dose will be the key to a good response. I will always be here to listen and I will continue to pray for healing. Big hugs to you both.
I'm doing ok, we have been busy caring for my mil. However we were sent an angel on earth, a retired nurse to help us. We met her yesterday and she is a wonderful, caring, compassionate person. She will help with the insulin injections and any other nursing support we need. She literally lives a block from my mil so it is giving us some mental relief.
Wishing you both a peaceful night💕
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@cookie54 you are so sweet and caring! Much appreciated 💐. New plan is set, I actually start Navelbine (instead of Eribulin) next week, I’ll find out more when I meet with my MO then. Good news it’s on the list of approved trial drugs, so onward ! Might be able to start the trial at end of August or beg of September. Will keep you all posted.
I am so glad your MIL has the retired nurse to come and help out, what a godsend! Yeah ! Enjoy your time with her, as you can. This must take so much pressure off all of your shoulders. I’m so happy for you.
Hugs to you both, Rhonda
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@rlschaller Oh you must feel a little weight bit of weight lifted knowing there is a plan in place. So we'll remain positive that this all comes together for you by the end of the summer.
Yes we can breathe a little! I'm hoping that maybe the nurse can encourage her to fight and be a little more compliant. In the end it's her life and she's 87 so she is tired, so I understand. It's in her hands and a higher being. We will just keep smothering her with love.
Hi to all here, wishing you a peaceful evening.
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@cookie54 yes, I love having a plan. Even when it changes so often, lol . It helps my mind stay calm. It’s nice being on a drug holiday in between treatment changes too.
I remember when my mom got tired by her conditions, and it was hard for her to be compliant and happy. Over the years she just let go into the divine and was happy again towards the end of her life. I love the smothering her with love and letting go into a higher beings hands.. ❤️0 -
Halo want to give a update
My mom became an angel last week.now she is free of all pain and suffering.
My only suggestion to all is be proactive abt ur treatment and when in doubt seek second opinion
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@gaurykris my deepest condolences for your loss. Such heartbreaking news. Sending much love, and big hugs to you. Rhonda
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Thank you Rhonda. Being positive is very much important. All the best with ur treatments im sure with positivity you will have long beautiful life ahead.
To all lovely ladies out here.this platform has taught me lot of things infact it is these support and information that has given me the mental strength all throughout this journey. My mom was diagnosed in 2022. So all these years platforms like this has been my consolation
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@gaurykris My sincere condolences, I am saddened to hear of this. May she rest in eternal peace free of all the pain and struggles. I'm glad you found a place to gain mental strength and be able to support your mom. I know it's such a deep pain to lose a parent. Wrapping you in a big comfort hug❌⭕️
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@rlschaller @scgal08 Morning ladies thinking of the both of you. Coffee cheers to a good day today. Hope your week is going well and perhaps able to enjoy some nicer weather.Continued prayers ❌⭕️
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@cookie54 @scgal08 coffee cheers ! I love my morning coffee. Now drinking my afternoon tea. Just came back from an afternoon walk, happy to be in air conditioned spaces! My scans were good, just primarily skin Mets needing treatments . Started Navelbine yesterday, hoping it is the one for the next few years. We’ll see, what a year it’s been of changing Meds every few months for these skin Mets ! Hoping for some systemic simplicity and perhaps starting the skin trial in the fall. Meanwhile here we are, toasting eachother with good hearts , and loving prayers. Have a lovely evening all. ❤️
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@rlschaller Glad you scans looked good! Now we need Navelbine to step up and conquer! Yes may this be the choice drug for many years.. Have a restful evening.
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@cookie54 I read in another thread your eye issue has resolved itself, but you are going for more tests. Just wanted to send you a great big hug, and lots of light to surround your way forward. ❤️🤗 I know it’s hard when one more thing needs to be looked at, ugh. It’s just the way of it, wishing you trust and patience, and kindness for yourself along the way. We are in your pockets for support.
@scgal08 i know the comments box disappeared for you on this thread.. but thought I’d give it a bump and see if it reappears for you lol.
Navelbine seems to be working, have had 2 of 3 infusions on cycle 1 - yeah team. The Mets are all shrinking a bit, the skin seems to be drying around and on the nodules, which I believe is the healing process . Will see what MOs say, as I see both of them this week, Northwell on Wednesday and then MSK on Friday.I will miss the Aug 6 zoom though as I will be at infusion, I will be there in spirit. Love to all -Rhonda
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@rlschaller Great news that your mets are reacting to treatment!! This made my day, continued prayers for complete resolution. In your pocket for appointments this week. Bummer that you can’t make the meeting, your calming spirit will he missed. I’m hoping to attend. Thanks for your well wishes, appointment isnt until October of course lol. Hopefully all will stay quiet until then. Plan to chat with MO again in next visit.
@scgal08 Hope your issues here have been resolved.How are feeling?
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Hi Gals ,
Just thought to drop by how are you all doing
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