Calling all TNs
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Hi LookingUpward ,I am sorry that you find yourself here but know you have lots of support here to help you through. Yes starting chemo had us all a little anxious to start for sure. Once you get past your first treatment you will feel less anxious as time goes on. Everyone has different degrees of side effects and I hope yours are minimal.
So as far as diet goes I always ate on the "healthier" side and exercised before this ,however there is always room for improvement I guess. So now I am trying to incorporate more fish and cancer fighting foods in my diet. Also low sugar, low carbs and minimally processed foods and no alcohol. I always felt like I didn't "fit" the description of a breast cancer patient as many of us do. I just had updated genetic testing and was negative. So honestly I don't know if the way ate/eat made a difference for me honestly. For me trying to eat more healthy helps me mentally feel like I am doing all I can do to help the situation. Do what makes you feel the best about your situation, one day at a time.
I wish you all the best going foward and we are all here to help you. Hugs(())
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LookingUpward, welcome and I'm sorry to see you here. There is a chemo group every month, where people can compare notes and support each other. Look for the January 2021 group.
As to diet, you might find that it changes simply because different foods appeal to you (or repulse you!) than you usually eat. Drinking lots of water, eating a little light especially in the first couple of days, will probably help you with nausea. Also you will be prescribed probably at least two different nausea drugs. Don't hesitate to use them if needed. Don't wait until you're in the midst of a bad session to start taking them. If you start to feel queasy, go for it, because waiting will make it harder to settle.
That said, I had very little nausea with chemo, though I didn't have Taxotere. (mine was adriamycin and cytoxan.)
Overall, chemo side effects vary widely. Don't assume that you will react the same as anyone else. You might sail through with little trouble, or maybe not. Your MO will be able to help a lot, though. ASK for help if you need it. That's what they are there for.
Feel free to come through here and ask TN-specific questions. It's not an especially active thread generally, so your month chemo group will often be more help.
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Looking Upward, if your TNBC is high grade (3) you might ask your MD about Carboplatin. That is indicated for high grade TNBC. I was given taxitere/carboplatin.
I made a lot of fiet changes. I did a lot of complimentary and integrative things (on TNBC 'share your story' pinned thread page 6). Some people do and some don't. I found Fasting Mimicking (FMD, Dr Valter Longo) to be very helpful at managing my chemos and keeping SEs low.
I am so happy that you found your cancer so early!!
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Hi friends - its been a while! I've hit 8 yrs since dx. I actually got approved for life insurance, which I'm thrilled about. This has allowed me to look for different career opportunities. I'm reaching out on a special ask.
I am working with a hospital on how patients search for doctors. I'd like to share my thoughts and query this group for additional perspective.
Aside from standard search capabilities of name, office name, location/proximity:
1) more granular filters to include specialties ( i.e. triple negative) vs high level (i.e. oncology or breast cancer)
2) bar at the top what says, I'm looking for a doctor for (insert name)
3) method to indicate whether a doctor is researching/leading/participating in a clinical trial (route to it, if possible)
4) method to indicate if the Doctor has published medical journals (route to it, if possible)
5) better promotion of doctor satisfaction rating from patients (better method to engage/collect)
What are some other details or ways you search for Doctors?
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Good morning. a quick stop by to encourage you. I will be 8 years out for a local recurrence of TN in May. I was first diagnosed in 2009 and a local recurrence in 2013. Carboplatin and taxotere, along with bilateral mx and DIEP, seemed to do the trick. (So far). Praying for all of you. Keep your mind on the present, the future is too anxiety producing. Every day is precious.
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Thank you, 5andcounting. That's a great message for me today. Congratulations on your good health.
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5andcounting, I agree with MountainMia, this is exactly what I needed to hear today. I just finished treatment on Christmas Eve. While I am so grateful to be done, it is such an adjustment. I love your advice to keep your thoughts in the present and trying so hard to do that. But it’s the how that I’m finding hard. I’ve really been focusing on exercise and getting my strength back, work and family. But I’m just wondering, how long did it take you to reach that place where you were able to fully-focus on the present. I find that no matter how hard I try, my mind keeps drifting back to the high rate of TN recurrence.
I truly want to live fully in the present. Any helpful tips from follow TNs?
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Poppy, I can't help you about not thinking about recurrence! I think about it every day. But I try to stay realistic in my thinking, reminding myself that 1) it will happen or not, and I can't change that by ruminating about it; 2) my Predict stats show the probability of death from tnbc (my stats only, not yours!) are vastly in my favor, even if not as good as I want; 3) I get to decide what "vastly in my favor" means. And 4) I always have plenty to do TODAY, so I should get busy doing it.
And for me, today, that means now I need to get up from the computer and go do something else! I'll come back and check later, though, as I'd love to see if other people chime in.
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Just stopping in to give you lovely ladies some encouragement. I was first diagnosed in 2011. I quickly relapsed and was back in treatment in 2013. At that time a great doctor at Mass General gave me a study that projected I had a 10-23% of survival.
I am now approaching 7 years of NED. Have hope. It’s okay to look at statistics, but they’re not always right. Believe that you will survive this!
Just to make you laugh, I’m including a picture of the cake I gave my doctor and staff on my 5 year anniversary .I swear my very warped sense of humor played a big role in my survival.
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Kathryn--that cake is the bomb, and congrats on your milestone. Keep up the good work!
Hello all. I've recently been diagnosed with IDC, IBC, and discovered by reading my doctor's visit followup report last night that since my "PR" value is only 12% he considers me "TN." Oh, goody. Since I really am clueless about everything breast-cancer related, I'm on a roller coaster of emotions this week. I am well past menopause so I'm wondering how the whole hormone thing will affect my treatment.
I have a brain MRI tomorrow and an echo-cardiogram later in the week, on the home stretch to having my port installed. I'm waiting on PET scan results and learning an entire new language that I hoped I'd never have to know. I'm going to read this thread from the beginning and see what I can learn from you all.
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5andcounting and Kathryn,
Thanks for checking in and giving the rest of us encouragement. It’s great to hear from you guys.
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LW422,
It is overwhelming, especially at first. I think that this website is very helpful. I wish I had discovered it when I was first diagnosed in June 2019. I’m glad for you that your doctors are doing the PET scan. I had brain MRI, breast MRI, bone scan, full body CT, and echocardiogram before I started chemo but no PET. All the tests were done in a week because they had to rush me into chemo since the tumor seemed to be growing very quickly. I had to get my port implanted after my first infusion because there wasn’t enough time to do it before I began chemo. Once I was in active treatment, I focused on managing side effects from the treatment. This website has great info. on dealing with side effects. For example, I was totally prepared for nausea and vomiting with Adriamycin and cytoxan (which fortunately for me, I didn’t have), but I was not prepared for the hemorrhoids (TMI?) or shingles. My Onc. Nurses were very helpful, but I wish I had discovered this website during my Ac-T chemo treatment. The ladies here will be helpful to you. Hang in there
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LW422, one of the few advantages of being triple negative is we don't need hormone-based treatments. Of course, that's also one of the worst things about triple negative, because we don't have that in our arsenal. But "the whole hormone thing" you mention doesn't really come into play for us. Since you're past menopause, you're probably fairly estrogen stable, assuming your weight/fat is fairly stable. The chemo probably won't affect that at all.
You've entered a portal to a whole new world, with different language and rules. We'll do what we can to make it easier for you. Ask questions as they come up. I'm sure others have recommended you join up with a chemo group to have ongoing support during that process. You can check in with the November and December 2020 threads to get a feel for them, and then jump in with whatever month you begin chemo, yourself.
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Thanks, NorCalS and Mia. Naturally I'm really scared about chemo and hoping side effects are manageable. I have been spending far too much time on this forum, trying to absorb everything, though I'll admit that some information adds to my anxiety. I have an aggressive cancer (IBC) so things have been happening pretty fast which I suppose is a good thing, but it has me reeling.
I appreciate the good wishes and I am hopeful that we all have a good outcome.
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kathrynn, Congrats to you!!!!! What a great milestone to pass, glad to hear good news! Thanks for posting it truly does give me hope when I hear success stories.
Also love the cake, adorable and looks yummy. Hope you enjoyed it! Be well.
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Hello All,
Just wanted to come on here to say that I am 3 YEARS out from a TNBC diagnosis! I had surgery 1/25/18. I pray that I can come back here to say I reached the 5 year milestone
Hugs and best wishes to everyone!
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Congratulations Krissy. Three years is a big deal in the TNBC world. I’m only 1.5 years out, but hope to reach 3, then aim for 5. It’s always good to hear another TN gal doing well. Thanks for checking in
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LW422,
My understanding is that aggressive TN cancer responds well to chemo. The AC part is tough, but doable. I felt like my tumor responded the fastest to AC. I hope the chemo is effective for you as well. There may be some weird side effects, but there are so many ladies who have gone through this on this board, that there will be someone who wean give you some tips and tricks. In fact, I think there is a thread for tips for handling chemo. We’re here for you.
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Krissy! YAY for three years!!!
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Yes, hooray! Three years, big sigh of relief!! Here's to 3 more!
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congrats!! Wonderful words of encouragement for sure!!!!
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Krissy37 congrats on the three years!!
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Today is my one year anniversary since partial mastectomy with reconstruction and lymph node removal. No evidence of disease!!! stage 3 TNBC
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Well, this is a club I never thought I would be a member of. I was diagnosed on 2/4/21 with Triple Negative IDC. I was prepared for the cancer diagnosis but not the triple negative! Terrifying to say the least. Thursday I saw my breast surgeon, plastic surgeon and geneticist. My tumor is on the left side, 3mm in size and no apparent lymph nodes affected. It was decided to do a double mastectomy on 3/3 followed with chemo. I will meet with my oncologist 2 weeks after surgery. I’m in the DC area and feel I have found a good team. I have my game face on for my family and friends and trying to only think positive thoughts but man this is a monster. Glad I found this forum. Need all the good advice and support.
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1414–I am so sorry you are here, but you have found a great place for support. I’m a fellow TN, diagnosed last May. I am not going to say I know how you feel, because it is different for us all. But I remember feeling so overwhelmed with the TN diagnosis. But, I want you to know, treatment was tough but I got through it and it was hard, but not as hard as I had feared. Make sure you find a doctor you trust—once you have that trust it does help getting through treatment.
I remember early in my diagnosis, I found another TN. She told me we are in a sorority that nobody wants to join, but once you do we are here for each other. That meant a lot to me, so I wanted to say the same to you. You’ll find a lot of very smart and supportive people on this site. Please know that I’m here for you, too. To cheer you on, answer any questions, or just to vent to. We are here for all of you—no game face ever required.
You said you would take any advice. Here is mine. Don’t forget, you don’t need to be brave or be strong or be positive for anyone else. Cancer sucks, what you are going through is tough. And you shouldn’t have to pretend to feel anything other than what you are really feeling. The most important thing you have to do right now is toshow up. The second is to be kind to yourself. The rest are details. Sending you a big hug.
Kristen
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1414 - I too am TN, diagnosed last March, in fact it was the the day my state began its stay at home order due to covid. Because of this my MO needed to get me going ASAP so I did chemo first and then surgery. I went from being diagnosed on Thursday to meeting my MO and BS on Tuesday and starting chemo on Wednesday. Everything was so rushed, to say that I was overwhelmed is an understatement, but it was doable.
Chemo was not as bad as I thought it was going to be. I had my moments, but nothing horrible. Recovery from surgery, for me, was a breeze. I was actually surprised how well I felt. I did not need pain meds and was able to get by on Advil and Tylenol. I had an issue with one drain, but it was more of a nuisance than anything else. I hope you have a similar, if not better, experience.
Poppy_90 has given you some great advice, please do be kind to yourself! If you need anything, please feel free to reach out! Sending you a virtual hug!
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Hello fellow TN's! Today is my 4 year cancerversary. I just wanted to offer some words of encouragement to any of you who could use them. Every day I'm thankful that I'm here and that I've been given the opportunity to see my sons grow from 6 years old to 10. I hope to be here for the long haul! Like many others, I do have side effects from treatment and the pandemic hasn't been easy but I try to give myself grace on the hard days. I hope that you do the same for yourself.
Hugs to all!
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Yay, Flynn! Congratulations on hitting your four year mark. I'm coming up on four years since my surgery in April. It's amazing how these anniversaries mean so much to us triple negatives.
Here's hoping for many, many, many more years with your sons.
Trish
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Flynn, thanks so much for sharing this. Four years is something to celebrate! I echo Trishyla and hope you have many, many years together with your sons.
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Martaj & Flynn - congrats on your anniversary, Trishyla on the upcoming anniversary. I hope and pray to get there as I do for all the others going through bc and any other type of cancer.
I see my MO tomorrow after a 8 week break from Xeloda as we thought my body was not tolerating it very well; SE's did not go away during these 8 weeks and now I'm thinking it was the AC & Taxol I did last summer. I'm apprehensive as I'd like to finish my treatment, but worried my body is now reacting to the assault from chemo and previous medical issue, not to mention I still have my TE's and they are causing some achiness; looking forward to the exchange. This frigid weather does not help, so I'm praying for warmer days to come soon. Maybe it's time to start planning a vacation to somewhere warm, near the ocean!
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