Calling all TNs
Comments
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@cookie54 thank you! I so look forward to a NED pet scan in my future lol… but I’ll take no new progressions too. Appreciate the good vibes from all.
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@rlschaller so glad to hear Trodelvy working for you! I also feel like my TNBC is aggressive as the chemo did not seem to touch the cancer in my lymph node (may even have progressed given the size of it) so it is great to know what alternatives are working for us given we don't have a lot of options.
I had an auxiliary node clearance this past week as a follow up surgery so I'll find out those results next week. My BS wants me to go see an RO to discuss radiation to my underarm and collarbone lymph nodes. Just waiting for additional info from my previous RO in Singapore to find out if those areas were radiated last time.
My meeting with my MO is on Wednesday this week so I'll get more info on when I will be starting Xeloda.
@rlschaller @cookie54 or any others, what side effects did you get on Xeloda? I've been reading on the Xeloda forum but most that post there seem to have quite bad side effects. Just wondering if it is possible to get away with just the usual fatigue.
@norcals @vlhvlh thank you for coming back to let us know how you are doing!
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dawn68,
The side effects from Xeloda can vary depending on dosage and schedule. Initially, I was scheduled to have the highest dosage, but MO decided to reduce the dose. I think my cycles were two weeks of Xeloda and one week off. I was on it for 6 months. Others have a different schedule and have been on it for a year. I am not sure how they decide which protocol to use. Although, when I was on Xeloda, it was still relatively newer to add Xeloda for those of us who did not get a PCR. I had headaches while I was on Xeloda, so I did not like it. However, others have found it much more tolerable than IV chemo. I think the prednisone that I took during IV chemo really helped me get through AC-T. Without the prednisone for Xeloda, I felt more tired and it just felt harder psychologically to get through at the time. When I look back now, it probably was the most tolerable of all the chemos.
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@dawn68 The worst SE for me is hand/foot syndrome .However with a dose reduction and low folate diet it has been much more tolerable for me. I do notice occasional headaches my week on and mild nausea at times.
Prior to me being Stage IV I was on 14/7 schedule, which I felt was more difficult. At this present Stage I am 7/7 which is pretty decent. As you know everyone is different and we all react differently to drugs.
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Hello everyone,
It's been quite a while since I visited this wonderful page. Checking in say hello to TNBC friends.
Diagnosed in 2017, Stage 2B, double mastectomy without recon (flat), PALB2 mutation, one dose dense round of chemo (Adria & Cytox) (I dropped out of chemo very early).
Wishing you all a peaceful day.
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@dawn68 i was on a 14/7 regiment. It was quite manageable, very mild fatigue at times nothing to write about. The main thing for me was scheduling lol … making sure there a 10-12 hours between eating/dosing. I did a salt water rinse 3x a day to prevent mouth sores, and used udderly smooth cream for my peeling hands and feet. I have to say the peeling was so annoying, it looked ugly and my mind got caught up in wanting perfect skin…but with thick socks , cream and good sneakers it was fine. My feet were worse than my hands. But it is a miracle drug for so many. Worth giving it a go!
@romashka thanks for sharing your good news. Awesome to read how well you are, lovely - wishing you all good things.
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Thank you everyone for the feedback and advice on managing Xeloda SEs. I'll be starting it in 3 weeks once I've healed from my surgeries. Not sure what the dosage, frequency, or duration will be yet. All nodes were clear from my auxiliary node clearance so no radiation thankfully.
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I'm 66 so older than most of you. I was diagnosed with TNBC at the beginning of May 2024.
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hi @justsnapd8 I’m right up there with you, I’m 65, turning 66 in October . First diagnosed at 64. Welcome to the discussions, happy to share or answer questions along the way. It’s a very helpful and supportive group of gals here.
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@rlschaller Thank you so much! Happy to join you. Well, sort of! 😊
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Hey Everyone, popping over from the HER2+ threads as I recently (Friday) found out that my diagnosis was incorrect and I am actually triple negative.
I'm 57, was diagnosed at 56 with Stage IV mets to lung in my left lung along with stage I lung cancer in the right found during an unrelated to cancer CT scan of my lungs in April.
I was diagnosed at 46 with HER2+ and underwent lumpectomy, taxol/herceptin and radiation.
I've just finished round 3 of TCHP with 4 scheduled. My final scheduled chemo on Aug 5 with be Taxol/Carboplatin without Herceptin/Prejeta but with immunotherapy. I don't know which drug it will be, the tumor board are to discuss on Wednesday.
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Hey @fossf56 I am so sorry your diagnosis got changed, as if cancer isn't overwhelming enough. But hopefully this will be the right treatment for you. My protocol is called Keynote 522, the immunotherapy drug being Keytruda. I also get Taxol and Carboplatin. I get all 3 the first week of the cycle, and Taxol only for the 2 weeks following, then start a new cycle. I'm in cycle 2 now and will get a total of 4 cycles then I'll get 4 cycles of Adriamycin, Cytoxan, and Keytruda. Not sure how that will be scheduled.
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When I was on Adriamycin/Cytoxin it was every 2 weeks for 2 months. And when I was on Taxol/Carboplatin it was weekly for 3 months, with Keytruda with both. Everyone’s treatment plan is different I’ve learned. Wishing you both good luck on your chemo regimens. Managing treatments regardless of the type, for me has been finding the silver lining every day, so helpful to keep cultivating a positive mindset, and eating Whole Foods and exercise , meditation… all have helped me so much. Cancer treatment has required a dedication to keeping my mind and my heart open … that has been really fascinating . Whatever part of the journey you are on, regardless of how you manage (or not) love that we have each other to talk to .
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@fossf56 Sorry you are dealing with so much, it just stinks! Sounds like your team is right on top of things. I hope your the tumor board meeting gives your MO further insight on your continued treatment plan. Keep us posted on how your doing ,sending positive vibes your way.
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I agree with Cookie54. The tumor board can be such a great help in figuring out the right treatment. When I was initially diagnosed, the MO recommended a neoadjuvent chemo treatment that did not include AC. After a tumor board meeting, which included my surgeon, the recommendation changed to AC-T. The tumor board was involved in every aspect of my treatment and I think it really helped, especially since my MO was relatively newer.
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Hi everyone,
Haven't signed in in a long time…
6 years out from Stage 3 TNBC in 2018. I am in perfect health and wanted to share my news so those currently in Tx have hope.
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Hello everyone,
I just joined this TNBC club recently and to say I’m terrified is quite an understatement.
I’ve been on a roller coaster of emotions. I’ve had some ok days, when I can maintain, but most days have been very very dark.I’m 57F. My mom died from BC in 2007. Her’s was not triple negative.
I believe mine is grade 3, early stage but onc didn’t say which one. No evidence of metastasis on a body and bone scan last week. I don’t feel certain with that as I’ve read of others who thought the same only to find out differently later. I do hope the scans were right of course. My tumor was measured at .90 cm. That was 2-3 weeks ago, so it may have grown.
I’m scheduled for port placement this Tuesday and first chemo/taxol treatment is Thursday. I’m very worried, scared, sad and angry sometimes. I have had horrible health anxiety my whole life and this is a living nightmare. I’m also prone to terrible side effects so that’s weighing heavily on my mind as well. I dread going bald as I’ve had long hair for 30+ years…but can handle that aspect.I’m sorry to sound so bleak, I’m hoping I can feel more positive at some point. I’m trying, I’m really trying. I got assigned a counselor first thing as my outlook was so gloomy at first. And I’m on an antidepressant for the first time in a long time, Lexapro. I’m a little better I think.
Good to meet you all but I sure hate the reason why.
Thank you for your time
Ps. Thank you to santabarbarian for the hope 💕
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@santabarbarian woo hoo! Thanks for sharing and taking the time to let us know how well you are. Perfect health - Fabulous- it’s awesome . And hopeful to hear that tnb can still result in perfect health. All the best!
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@mariagrace911 oh my , so much to carry and feel. It is overwhelming and fears are natural. Many women are going through the same feelings. I was devastated when I first learned I had tnb. And then I became more optimistic and happy as I got used to treatment and read books and took control of my lifestyle which helped me. But one feeling at a time helping yourself as you can one day at a time. I’m so sorry to read how hard it is. We are here for you, it will get easier over time, support is key ! When you are up to it, and if it feels right for you this book by Ian Gawler was a life changer for me It’s called You Can Conquer Cancer. Welcome to the forum and know we are here for you- Rhonda
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@santabarbarian Hey there , happy to see ya! Big congrats on 6 yrs..yipeeee! Keep rollin on girl❣️
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@mariagrace911 Hi there so sorry your here on these terms. We all have had a sometimes still experience the same feelings you have. it's normal as your life has been uprooted. I will say that you will feel a little more settled once you start your plan. You will feel some relief as your cancer is being attacked! Look at each individual step and not the whole staircase. I know it's hard but if you focus on each day it will take lots of burden off of you.
Keep us posted, we're all here for you.Sending positive thoughts and strength your way!
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@mariagrace911 We all hate for you to join us here! We remember being overwhelmed when we started our journey. It's still fairly new to me, just having started Cycle 3 of my treatment plan last week. I've been incredibly lucky when it comes to side effects. The pre-meds they give me keeps the SE at bay. The port placement will be a breeze. You'll be a bit bruised and a little sore, but you'll be glad it's done when you get your first infusion. Has your care team laid out a treatment plan for you?
@santabarbarian That's wonderful news to hear! Thanks for sharing!0 -
Hello again everyone,
I’m so sorry for the one post, then dropping out of sight. It was a very busy week for me.
Thank you all, @rlschaller, @cookie54, and @justsnapd8, so much for the warm welcomes and encouraging messages. I appreciated them all so much.The port placement went fine on Tuesday. Had my first Taxol infusion on Thursday. I had one of those reactions, my lungs were closing up, my face went beet red/hot, my kidneys/back started hurting. They took good care of me, gave me additional Benadryl and steroids….in a couple minutes I was feeling better. I’m a type 2 diabetic so the extra steroids ran my BG up way high that night, so that was fun. I had to take extra meds to get it back down. I’m not on insulin.
@justsnapd8- my treatment is, I think, the AC/TC. With 12 weeks of taxol first. Then 4 treatments of AC every 2 weeks for 2 months. Sounds similar to @rlschaller initial treatment.
I hope it’s the right plan…as I know of a former triple negative patient from 2005 who is still clear to this day.
This was back when they did the double mastectomy first, then did chemo and radiation(I think she had radiation).
I’m concerned that there appear to be a lot of recurrences these days?…does everyone feel confident in not having the mastectomy first? I’ve read this is standard protocol these days…I don’t want to question my doctors of course. It’s just hard to ignore her success for nearly 20 years.Thank you all again, wishing everyone a happy week ahead.
Ps. @rlschaller, I will be looking for that book, thank you for suggesting it.0 -
@mariagrace911 thats a good conversation to have with your MO or breast surgeon. Trust in your medical team is key, if you don't agree with the treatment plan, get a second opinion. For me, I started chemo first before surgery, called neoadjuvent chemo because my initial cancer spread to my nodes and was also in the breast and when that happens, it’s the standard of care for TNB that is not only in the breast - to begin with chemo, then surgery, then chemo and radiation to prevent recurrence. Hope that helps.
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@mariagrace911 My tumor was huge when I was diagnosed, so I'm not sure cutting into or around it would have been a good idea. They also biopsied a lymph node that was worrisome on ultrasound; it was positive as well. My treatment plan is called Keynote 522, which is a split regimen. 4 cycles (12 wks) of carboplatin, taxol, and Keytruda. Then 4 more cycles of Adriamycin, Cytoxin, and Keytruda. I start cycle 4 of the 1st half Tuesday. The hope is that the chemo will shrink the tumor down to nothing before surgery. After surgery, I'll have radiation. I don't remember how many radiation treatments are planned. I do have faith in this treatment plan. Talk to your care team, like @rlschaller suggested. It's the best way to understand things from a medical perspective.
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Hey guys, newly diagnosed triple negative, 17 years ago I also battled the same at age 43, mammogram caught this 7mm cancer, doctors were shocked that it is the same as back in 2007, I am too and now the fear hits again, had surgery last week , all pathology came back negative even lymph nodes, I’m just not sure at 60 I can do the chemo again
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@pinkone501 I'm sorry you have to go through it again. I'm 66 and this is my first time. I can't imagine a repeat, though we do what we have to do to survive!
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Thanks, how is your treatment going?
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@pinkone501 I shouldn't complain. Others have far worse side effects. I'm just tired of it, and not even halfway through chemo treatments. And I still have surgery and radiation to look forward to!
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