Calling all TNs
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@justsnapd8 to be honest I found AC harder than Carbo… BUT with the Carbo they gave me steroids (Dexmethsone) to take for 2 days after which they did not on AC, only steroids on the day. Not sure why, maybe it was not the protocol back then. Also my worst SE on AC was the nausea but they never found nausea meds that worked for me so I spent at least 3-4 days the first week in bed with extreme nausea. With Carbo not only did I not feel as nauseous, but they also found nausea meds that worked for me (ondansetron). I lost a lot of weight on AC but actually gained some on Carbo 😁. So I think it does depend on the person… and the right meds combo to manage any side effects.
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@dawn68 Thank you for being honest, I need to hear the truth. I'm hoping my luck holds where nausea is concerned. The meds have kept it at bay so far and I hope they'll continue to do so. I've not had to take the nausea meds I have "just in case", so we'll see!
@pinkone501 Go for it. You'll be good for a few days because of the steroids. I use ice wraps on my wrists and ankles. Covering the whole hands and feet was too painful for me. I started with what I thought was neuropathy, so they backed off 20% on the taxol and it stopped hurting! Be sure and tell your MO if you feel anything! And yes, I think it matters. Taxol-induced neuropathy can be permanent. So anything you can do to prevent going there is worth it.
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Greetings to my fellow TNBCs. Just want to share some good news. Yesterday was my 66th birthday. I wasn't sure i would be here for that milestone because today marks eight years since I was diagnosed with stage 2 triple negative breast cancer.
I found the lump on 8/22/16, had a biopsy on 8/25/16 and got the phone call from my primary care doctor on 8/29/16, while I was out with my extended family celebrating my 58th birthday. I didn't tell anyone that day. I was too shell shocked.
I met with the breast surgeon two days later and she found a lump in my other breast. After more imaging and two more biopsies I was also diagnosed with ER/PR+, Her2- cancer. All in all, I had seven tumors, with five distinct kinds of cancer, in both breasts. As my surgeon put it, I had a full bingo card of cancers. Not surprisingly, after my six months of AC/T chemo, I opted for a bilateral mastectomy.
Unfortunately, I did not get a PCR from the chemo. They discovered residual cancer as well as a micrometastis in one lymph node. I chose to forego radiation, because the most aggressive cancer, the TNBC, was on the left side, very near to my heart. Plus, I had been a long time smoker and didn't want to further damage my lungs. I chose instead to be one of the first to use Xeloda, outside of a clinical trial, for early stage TNBC without a PCR. I also started using Metformin, which has promise in preventing a reoccurance of TNBC.
I finished treatment in late 2018, and have mostly been doing pretty well since. I still have chemo brain, and ongoing side effects from the Anastrozole (anti hormonal therapy). I had to stop that after a few months because of the debilitating side effects.
In the last eight years I've gotten to see my youngest graduate college, get her master's and become a teacher. I also got to see my grandson join the army reserves and get married. Lots to celebrate, and I'm glad I got to be here for it all.
Trish
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@trishyla1 Hi, So glad to hear you continue to do well and enjoying life! Thanks for sharing as it gives many women hope with TNBC
@pinkone501 I also found A/C to be harder than most other treatments so far. Carbo for me was very tolerable for me. As mentioned above everyone tolerates things differently. Fingers crossed I think you have a good chance to enjoy your birthday.
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Morning Ladies, looking forward to this 3 day holiday, family reunion Sunday, hope you all have a great one and can enjoy some of it, I am trying not to think too much about the up coming chemo, but as much as I try it is still here, been looking at wigs at least to wear to work, so I can look at least somewhat normal😂
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@trishyla1 I had not heard that about Metformin, I have been on that for awhile because of type 2 diabetes, guess it did not help me much
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@trishyla1 so good to hear how well you are doing. That is wonderful. So glad you shared how you are.
@pinkone501 working on C/T should be fine, try it. I worked during it as well. Enjoy the family reunion on Sunday!
Ill be at a wedding on Sunday with family as well, and I am hoping to dance and laugh a lot this weekend. Hugs to all!0 -
@trishyla1 Thank you so much for coming back on & letting us know how you are doing! Very encouraging. So wonderful all the milestones you've been able to celebrate and I am sure many more to come.
@pinkone501 I concur you should be fine to work on Carbo/Taxol. Since you start on a Monday, if you are going to get it, fatigue will probably hit Friday & the weekend. Enjoy your family reunion & don't worry about your chemo too much, it is very doable.
@rlschaller enjoy your wedding! Joy & laughter is good for the healing process.
Sadly I have a large list of friends and acquaintances diagnosed with some form of cancer — 5 of them in our new town we just moved to 18 months ago! One of them recommended the book Radical Remission. I downloaded the audio book to listen to while gardening. Though I may be skeptical about some of it, there was some good points on things, in addition to traditional medicine, that support our healing process… like the chapters on finding joy and laughter and having strong reasons to live. So party it up at your weddings & family reunions ! 😁
4 days into Xeloda and all is well. I feel like I need to go to bed at 8 pm but other than that no side effects yet.
Have a wonderful weekend everyone!
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@dawn68 I loved Radical Remission, a friend recommended it. Lots to love and lots to question, agreed. But at the end of the day - it’s all about the joy and laughter, and enjoying life to aid the healing process. Another great book is You Can Conquer Cancer by Ian Gawler, lots in there to love too! Ok, now time to pack 🥳
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Hello ladies. I've read a few pages back getting familiar with everyone since my dx a week ago. Thank you everyone for sharing your experiences. I hope I can keep you all straight.
I've been on BCO for quite a while first having ER+ her2- in 2008. GRADE 1 Then dx stage 4 in 2017. And now this new primary TNBC GRADE 2. I havent seen my MO about it yet as he is waiting results of all those genetic tests. I only have a vague idea what my future holds and try not to jump to conclusions on how he wIll treat both cancers at once. I'll probably check out this thread regularly. I don't post much cause I can't keep everything straight anymore amongst all the distractions at home.
I hope to fill out my profile next.
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@gailmary welcome to the TN board! We don't have as many treatment options as +'s but my MO did mention that there were some other treatment options if my genetic tests came back positive. In my case, anything they can test for came back negative. It will be interesting to see what he recommends.
@rlschaller thank you for the additional book recommendation. I'll see if they have an audio version of that one too. I've been resisting audio books but now I find that a prefer reading novels but like listening to self-help type books while out walking or gardening.
For everyone in the US & Canada, enjoy your long weekend!
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Dawn thank you for the welcome and answering a question I had already. Good to know they can also treat based on genetics. I'm guessing that meant mutations. If that's the case might yours not mutate in the future then you could be treated for it.
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Morning Ladies, family reunion was a blast, now back to the upcoming chemo, I soooo dread it, have not found a wig I really like yet, hope you all enjoyed the long holiday weekend
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@pinkone501 I'm glad you had a blast! I knew you would. I had a great weekend, albeit laid back. I got to visit my niece and her little family, not knowing my blood levels were so low I shouldn't have been around kids.
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Gals, My weekend away was amazing too. So nice to travel with my honey and son and daughter-in-law. I danced and ate chocolate and had wine (all cheats on my lifestyle medicine regiment) but now back to vegies and roobois tea lol. I went to Mystic CT for my nephews wedding extravaganza at a vineyard. Such fun. My sister cried when she saw me, so important that I was there for her too. Wore my mother’s pearls with my little black dress 👗 so she could be there in spirit as she passed on earlier this year. The cats were just fine for three days with no cuddling, just a cat sitter coming in to feed them. So glad I went, and so glad to be back home too.
@gailmary welcome to the TNB thread. Hope our experiences are helpful, as you navigate this new cancer type. We are a positive supportive bunch. And love your signature of you don’t know what you don’t know. So true. Being open to discovering the newness of each moment is so important 🌈
@justsnapd8 so glad you had a laid back weekend and enjoyed your visit with niece and kids, Fingers crossed no germs 🦠 were shared! Just love ❤️@pinkone501 wig wise..not sure where you are located but this is where I got mine, and I loved this salon, everyone I spoke to and worked with and love my wig, maybe they do mail order try ones if you are not in the New York area. Check out their website and maybe call them ? Barry Hendrickson’s Bitz-n-Pieces. They had me send them good hair day pics before I lost my hair, and they matched the color and gave me 4 styles to try on.
I understand dreading the chemo. I feel that way each time I have to change chemo regimens. But it’s such a part of life 🥰 big hugs as you get started.@dawn68 so true that no matter what we navigate, Making time for joy and laughter is truly great medicine.
Happy Tuesday.
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Morning Ladies, @rlschaller I will look them up, I am in Arkansas, southern girl lol
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Pink one, I'm trying to follow along but I can't find what your first dx was. And if you've had surgery. Was it a mastectomy. And didn't you get radiation the first time?. I thought you couldn't get it again same part of body.
Maybe it's just me. Getting anxious for my appointment with MO tomortow. I'm expecting him to lay it all out for me and I don't know what to expect. Reading here has given me plenty of ideas. Thank you everyone.
I think I'm most anxious how this is going to affect me this next year. And how my dd will handle it.
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@gailmary I can tell you how it affected me, but family dynamics are very different. I'm retired, single, and no kids. I chose to move in with my sister and her husband, so she could help me with meds, hydration, driving me to appts, etc. I didn't feel like I could handle everything by myself. My sister and my SIL take turns going to chemo with me, so I'm never alone. I have much to be grateful for! I still have my house, and I miss being there. It's a group of townhomes and I have friends my age there whom I miss terribly. I miss my privacy. My sister set up a room for me and even put a curtain over the hallway doorway so I do have privacy, but it's not the same as being at my house! I had to give up my private life, at least long enough to get through this.
My genetic tests were negative. I'm on a regimen called Keynote 522. 1st half is getting Carboplatin, Taxol, and Keytruda every 3rd week. I get the Taxol every week. Most of my SE has been diarrhea. I keep a good supply of Imodium on hand. The anti-nausea meds keep a check on nausea, which I'm grateful for. I'll be starting the 2nd half of Keynote 522 week after next. It's AC and Keytruda. I'm not sure if it'll be every 2 weeks or 3 weeks. I'm not looking forward to it regardless. Change is scary.
How old is your dd?1 -
@gailmary Hey Gail, My diagnosis this time is triple negative new primary, not in the same spot but in the same breast, negative nodes 7mm , had surgery one week after diagnosis just took the small spot out and will start chemo on Sept 16th, my oncologist said since it is triple negative chemo is needed even tho it will be a small dose once a week for 12 weeks taxol/carbo. In 2007 mine was also triple negative negative nodes 4 AC'S then surgery then taxol, and radiation stayed clear for 17 years , all my genetic testing has been negative for any mutations
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Hey Ladies, how do you know if you need the Keytruda, my Oncology doctor said no for me
Also scans coming up Sept 13th, was really hoping to avoid those, they really mess with my mind, doctor wasn't sure we were going to do them she said I am really not expecting them to show anything, Lord I sure hope they don't
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@pinkone501 @rlschaller so glad to hear you had a joyous weekend!
@pinkone501 good question on Keytruda. As it is part of the latest protocol for TNBC to prevent recurrence, my MO just put me on it the same time as chemo and I am continuing it for a year. When I have it alone every 3 weeks, I have no side effects. I had read online that it was only effective if you test positive for PD-L1 which I have never been tested for. So I asked my MO about this twice but he has said it does not matter if you are being treated for high risk early stage TNBC, it only matters if you are being treated for advanced TNBC. Not sure why it would only matter for the later case… if one has to test positive for PD-L1 to work, shouldn't it matter for both cases??…so still a bit confusing for me. @justsnapd8 were you tested for PD-L1?
@gailmary you should feel better after you meet with our MO, know what to expect, and have a plan in place. I am always anxious when going on a new treatment as not sure what to expect in terms of side effects but once started, I relax, good or bad at least I know what is coming.
I'm 10 days into Xeloda now and no side effects at all yet but still early days. Unfortunately though, after a day in the garden doing perhaps a little more landscaping work than I should have, I seem to have developed lymphedema symptoms in my hand. It swells up and becomes painful while sleeping. I have to get up, walk around and start moving around to get it to go back to normal. I have an arm compression but not a hand one so I'll discuss that with my lymphedema physio at my next appt. Also hoping if I take it easy for a few days it will improve.
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Dawn sorry to read about your hand swelling up from working in the garden , hope it can be relieved easily tonight. What a drag to have it be painful while sleeping and have to get up. Hopefully you will be able to sleep well tonight. Taking it easy sounds like the plan. Glad the Xeloda is going smoothly so far.0 -
Morning Ladies, I have no idea about the Keytruda, kinda worries me why she said I do not need it, she said why but I cant really remember, I will ask again when I go on for my first chemo on the 16th
Hope you ladies have a great weekend
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That sounds hard. How far from your house did you move? You are blessed to have family to help. I will have my dh. How long till you can go back home?
My dd is 47. She's autistic and adhd. Was in an abusive relationship for 18 yrs. He died 4 yrs ago. . She is an emotional mess. Lives across the street. I can't tell her my details yet. Little at a time. She just started cooking classes and already she can't keep up and is ready to quit. She is very disappointed.
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Hey Ladies, I just noticed my MO set me up to have a hearing test before I start the carbo, I didn't know it could effect your hearing
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@gailmary I have it easier than a lot of you. Reading about your circumstances and others reminds me how truly blessed I am. I hope your dh can give you all the support you need, and I hope your dd can handle it when you tell her. I'll be here probably 3 or 4 more months. Who knows? Maybe I'll be back home for Christmas!
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@dawn68 I didn't see PD-L1 on the list of genes tested. I tested positive for a BRIP1 gene variant. I didn't even see that when the results came in. Too overwhelmed with a cancer DX I suppose. More info on BRIP1 is below.
The BRIP1 gene is associated with autosomal dominant predisposition to ovarian cancer (PMID: 30733081) and autosomal recessive Fanconianemia (MedGen UID: 323015). Additionally, the BRIP1 gene has preliminary evidence supporting a correlation with autosomal dominant predisposition to breast and prostate cancer (PMID: 17033622, 28418444, 30733081, 32708810, 32853339)
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Busy busy. So here's my MO report from Thursday.
We Had to wait 15 minutes as he argued/ had discussion in hall outside door. Came in not his usual friendly self and didn't bring it up at first. Said your still on faslodex monthly and xgeva every 3 months?. Uh no. Quit xgeva. Ooo not happy about that. 1 more question then I finally made the comment about the new primary. Oh it's TN. That requires chemo and you already told me you don't want that. I'll have the nurse navigator follow you. You've got 2 years.
Wait! what? When did I say I wouldn't do chemo and why wouldn't you try to convince me. It seems he was remembering a discussion wrong where I was hoping my faslodex keeps working for a long time cause just the thought of getting the port gives me the heebee-geebees. Really. And he told me at the time with er+ that there is a good chance I may never need a port cause so many of the new meds are pills. So he was pissed cause he thought I was already refusing treatment and wasn't going to discuss it at all. Not even surgery!.
Earlier he mentioned a $30,000.00 prize for a cricket game he was coach for that afternoon. Or he coached the players and he was a referee? Whatever. Grrrr.
So now the plan is. Next week to do pet scan, echocardiogram and mri. Then see him Thursday with a plan for chemo. For how long before surgery he didn't say yet . And yes with immunotherapy and after for 1 yr. Yes continue on faslodex for er+.
Then he put in my record that I refused chemo at first. I gotta straighten him out. Wish me luck.
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@gailmary You need to see a MO that can focus on you, at least while he's in the room with you. It sounds like he is making assumptions without asking you how you feel. We're having a come to Jesus chat with my MO at my appointment Monday. They're not perfect, but it pisses me off when they ignore the needs of the patient. We're the ones going through cancer treatment, and we deserve to be heard and seen.
Getting a port makes chemo easier. It'll be sore for a few days, and takes a bit for the incision to heal. I have pain pills from when I got my port, but I never had to take one. Without a port, they'll have to place an IV, every time. And the chemo is hard on your veins.0 -
@pinkone501 how strange about a hearing test, are you having issues with your hearing? I’ve never had a hearing test while on chemo, it has never come up . I’d ask more questions so you know why. And yes, glad you will follow up on the 16th about the Keytruda if you don’t remember why. Always good to write down what she says, I type my MOs responses into my phone so I remember.
@gailmary oh my goodness how frustrating that conversation with your MO! Good you spoke up and advocated for yourself. The MOs have so many patients but you deserve his full attention and support. Do plan to continue questioning his statements, to set the record straight, you go girl! . Gosh, it’s so much work. The plan for TN sounds right. And agree with as @justsnapd8 said about getting a port. The procedure was easy, and it makes the infusions a breeze. I love my port. And I was anxious about it too beforehand, but it was fine.
Sharing with family is one step at a time, do what is best for you.@justsnapd8 glad you have your sister and sil to help you, it’s too hard doing this on your own if you have a choice to choose support it’s good. And going back home when you are done, sounds like a plan. The first time through I need Ed a lot more help. This time, the chemo is so mild, it feels almost normal most of the time.
I’m lucky to have a very supportive DH, who comes with me to my infusions and many times we both fall asleep lol..
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