Calling all TNs
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Hi All, I have stage 11 triple negative breast cancer. I am scheduled for surgery on 1230/2020. I am investigating treatment with carboplatin. Does anyone have experience with this
treatment? How do you go about asking your Doctor for a certain drug therapy.
Trying to get a grip. This is the first time I have ever done this too.
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I would like to know about the treatment with carboplatin. My Doctor has not talked about this treatment.
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I was prescribed carboplatin & taxotere. It is considered a good chemo for a basal or basal-like TNBC. I found it pretty tolerable. My treatment was every 3 weeks, x 6. Mostly had fatigue and brain fog not terrible. I did not ask for it by name but my MO suggested it.
It is not the most typical chemo for TNBC, I think more typical is AC/T, but it's used routinely on Her 2 + people with Her2 drugs added.
The standard of care in TNBC includes new stuff now... like They may test your PDL1 and other targets from the removed tumor to know what specific chemo to offer you. You are in the right forum with a lot of tNBC women who have been treated and who are active here.
Welcome to you as sorry as I am that you are here!
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hey nisjoan. I am sorry you have to join this club, but I know I found this community amazingly helpful during my diagnosis and treatment. I had surgery after chemo but I did ask my oncologist about carboplatin and had it added to my regimen. For me, I just let them know I had seen a few studies that showed carboplatin to increase the chances of complete response of the tumor before surgery and asked her how she would feel about adding it to treatment. We talked about differing studies but she said it was up to me. After a week of thinking about it I got back to her and said yes as long as she was still willing I wanted to do it. Don’t worry about being new to this kind of stuff. You’ll get used to it pretty fast which is nice but also kind of weird. Hang in there man.
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NISJOAN,
I was treated with taxol, carboplatin, trial drug atezolizumab, second phase was adramyicn and cytoxan. 4 weeks off, partial mastectomy with reconstruction, 4 weeks later 6 weeks whole breast radiation. continued atezolizumab for 1 full year every 3 weeks. I'm now considere no evidence of disease. 1 year out. It was a very rough year, but feel great now. Hair coming back, finger nails and toe nails look much better. Nails fell off.
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Nisjoan, I just want to join the others and say I’m sorry that you are here but we are all here behind you. Please let us know how we can help and keep us updated.
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Hello Nisjoan,
Welcome to the group, sorry you find yourself here. I lreceived the exact treatment that Martaj received. It was a study offered through the Breast Health Center. It was a rough year and I'm about 1 year past my surgery. I did get pCR. I have to say I feel I've turned a corner 😀 feeling so much better, like my old self. Be kind to yourself.
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Hi Nisjoan,
I'm so sorry that you find yourself here. I just recently finished Carboplatin/ Gemzar for a recurrent TNBC. I found it to be very tolerable with minimal side effects. My treatment was 2 weeks on 1 week off. With my initial diagnosis I was treated with adriamycin and cytoxan, was supposed to have taxotere also but i am allergic. As stated above A/C T is pretty typical therapy for TNBC.
Talking with your oncologist will get easier as things go along. It's important for them to know how you feel about the treatment they are prescribing for you. It is absolutely fine to inquire about drugs you research on your own if they haven't mentioned anything. Also it is important that you feel confident in your treatment plan without any regrets. I know for me the day before my appointment I always write down my thoughts on what I want to discuss with them.
I know this can be so overwhelming at times but you will make it through! This site is a great place to pop in for great information and support. Hang in there and best wishes to you.
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Congrats for 5 years lovesmyvizla. We were on surgery and chemo boards together. Sometimes it does not feel like 5 years... Happy Dance for sure.
Val
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Congrats to you, too Valstim. I'll hit my five year mark on 8/29/2021. Can't wait.
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Thanks so much Trishyla. Im marking my calendar for your date. Best wishes to all
Val
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Merry Christmas and wishes for a Happy Healthy New Year
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Happy 2021 to my TNBC sisters and (and a few brothers)!!
Many people were so thrilled to say goodbye to 2020, but my heart felt full of gratitude that I had a 2020 to experience, and we needed a 2020, to get to 2021 anyways!
On January 4th, I will reach my 9 years healthy thrivorship (the formal date of my surgery.) It's a blessing to be here, and I hope everyone finds comfort and support during times of diagnosis, transition, survivorship, and thrivorship!
All of us collectively enable others to feel empowered, with the mention of resources and links, nutritional care, current regimes/therapies, and the sisterhood/brotherhood that comes from this. I still remember many names of those who went through this the same point in time as I did. Many that I know from that period are reaching milestones as well, and continue to build their future.
I wish everyone a beautiful 2021!
Love,
Debra
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PS - Many of us look to those who have started this before us, to see how they are doing, and what advice they have, what treatment they have, etc.
When I was in treatment, I did a search, and made a list of individuals with similar chemotherapy and treatment. I have always kept that list, and usually I can still see those people posting every few years, even now. These individuals were already at the 5 year mark when I made the list (and they included individuals of various stages.) I started with the 5 year mark for the list, so I could have some confidence going in - because that's what I heard about the most at diagnosis, the milestones we achieve to get to the first 5 year benchmark. I found it helped me to affirm I could do it, when I see that they had. I also searched for survivors with very similar pathologies (ex: type of treatment, radiation or no radiation, nodes or margins, lumpectomy or mastectomy, etc.) but that was not part of the list, I might have touched based with those people in private message to get their thoughts on things or ask for any certain recommendations. I found that seeing someone online with something similar, who was doing well, helped give me hope. But from the original list many of those individuals are 14+ years to 28+ years. I feel hopefully science will do better at catching up and tracking all long-term survivors, so we can start to see really strong numbers for 15, 30, and 40 years. They are out there! Treatment and nutrition and strategy and overall care management and survivorship has improved significantly over the years.
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Hello Debra,
I just wanted to say congratulations on your survivorship of nine years for tomorrow.
I have never forgotten you and all the meaningful posts that you did on the TNs and Calling all triple negative patients in the UK. You gave so much help and support.
I have gone fifteen and a half years since my diagnosis, but never take anything for granted.
Keep up the good work.
Best wishes.
Love.
Sylvia xxxx
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Wishing all here a happy and HEALTHY new year!
Debra and Sylvia, - thank you for keeping us updated and encouraged!. You have been a source of support for so many here!
These boards have been my "go to" place and my most understanding confidents are here!
With all best wishes, and hugs, from NYC!
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Wishing all here a happy and HEALTHY new year!
Debra and Sylvia, - thank you for keeping us updated and encouraged!. You have been a source of support for so many here!
These boards have been my "go to" place and my most understanding confidents are here!
With all best wishes, and hugs, from NYC!
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anotherNYCGirl,
You deserve a hallelujah as well. Congrats on doing well - surviving cancer and the worst covid hotspot. Thank goodness for you. Happy New year
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NorCalS ,
THANK YOU! oxo
Stay well in CA, too!!
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Hi All. I'm a newbie to all of this. DIAGNOSIS: pT1bN0, stage IA grade 1 invasive ductal carcinoma of left breast, triple negative. I found out about a year ago that I have the BRCA2 gene mutation. I had my ovaries and tubes removed as preventive in July. I was going the path of althernating MRIs and mammograms every 6 months. At the first MRI in March there was a spot that we didn't consider too seriously because my mammograms have shown it for years and I was told not to worry about it. Mammogram in October showed nothing suspicious. The doctor ordered another MRI just to have something to compare the first with. Lo and behold, the spot had grown. Biopsy confirmed cancer, so In November I had a double mastectomy since I didn't want to deal with it recurring down the line. Friday I start chemo: Taxotere and Cytoxan every 3 weeks, x 4. I'm a little anxious about it. Did any of you change your diets? We eat a of of meat and potatoes and I'm trying to be healthier about choices now.
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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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