Calling all TNs
Comments
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Hello, all! I'm just wondering if any of you had Her2 equivocal? I was told I wouldn't benefit from herceptin, just below the threshold. Hoping to hear of other survivors with this aspect. Thank you!
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Beckham, my HER2 originally came back as equivocal. It was then tested using the FISH and it came back negative. Both the BS and MO never even discussed Herceptin or perjeta.
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Thanks for replying. Mine was negative originally, then equivocal. There's a trial for herceptin plus neuvax that looks very promising for her2 equivocal triple negative. I'm hoping I'm a candidate
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Have any of you seen this study? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5589510/pdf/cureus-0009-00000001445.pdf
I recently started a KETO diet. To lose weight and keep blood sugar in control. I am Type 1 and passed the 2yr mark cancer free a few months ago. The diet works for both and I don’t miss the carb foods at all. I was also ER/PR + on the opposite breast and arimidex has been causing weight gain. Despite my previous efforts to reduce/prevent weight gain KETO seems to be working now.
Encouraging to see this study. I will keep up KETO and pray my stage 1 TNBC doesn’t progress.
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Happy Mother’s Day ♥️♥️😀
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Happy Mohter’s Day everyone!
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hello ladies
I’m now 2.5 years from dx. I had both chemo and rads. My rads caused a blockage in my carotid artery. I had a stroke. Thanks to therapy I’ve gotten mostof my mobility back. I no longer wake up thinking of recurrence, just what ache or pain I’ll have for the day.
For those still in treatment, or just finishing it will get better, be it anxiety, side effects etc. a very wise lady on these boards told me, you have cancer, it’s not like a root canal where you get it pulled you heal up and are done. It’s an ongoing process as the treatments are a freight train through your body. You will not suddenly be better. It will take time. And many times “better” is how you feel at present. At first I didn’t understand totally, as I was into dosages, articles stats, but now I understand.
Hello to all my old friends, Div my heart is with you. VL22, Cathytoo, Lovemyvisla and all the Newbies. Sorry you had to join, but this is a great group. We tend to post furiously in the beginning and then drop off. I know I had to take a break from the boards, but we do pop back to comment.
Gentle waves to all
Val
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Libber: Thank you so much for sharing this case study. It's encouraging beyond belief. I started chemo on May 3 and began eating Keto about 3 weeks before that. I have been pre diabetic for probably 10-12 years and have been eating a modified Paleo since my first BC diagnosis 21 years ago. I am a full believer.
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Valstim52...Hi Val...I’m not on the site so much these days, but I did check in just now and saw your post. We are on the same time schedule. I am also 2 1/2 years from diagnosis. Can you believe it? Here we are braver and stronger...and hopefully on our way to many healthy years ahead. I want to tell all the newbies who are frightened, that time does move you along on to moments that aren’t filled with dark thoughts. I am so happy, dear friend, that you are well and doing well. I miss you and all our sister warriors. I hope we all stay on the bright side of our journey. ❤️❤️
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Hi Love MyVizsla....so happy to see your post. Hope you are feeling great
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Hi everyone, I’m also here to say that extreme anxiety is something most of us have at times. It does reduce and it takes time to come to a new equilibrium as we have to absorb the knowledge that we have had cancer, and that it could come back. I think the different coping strategies we all use to allow us to live happily with this knowledge are varied. On a good day I can count my blessings. This site is a huge support and comfort to me. I just log in once a week or less now and read a few threads which appeal to me. I found the thread “thin slices of joy” really helpful as it reminded me that trying to enjoy the small pleasures of life can lift your spirits and give you great contentment. Find a non-treatment related thread that appeals to you and it will help a lot!
Love and light to all my TN sisters. X
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I am a 30 yr old new mom of a 4 month old and unfortunately just diagnosed with TNBC. I am still in complete shock but have started treatment and was told I was "clinically" stage IIA, I rallied and tried to be positive in the face of this diagnosis, I however just looked at my mri results which showed internal mammary adenopathy! No one had ever even mentioned this to me! Of course I frantically looked things up and fell into complete depression. I spoke with my oncologist they said they won't know anything until surgery as I am getting chemo first. I am so scared and desperately looking for survivors with positive mammary lymoh node. Please help!
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Congratulations Teka, that is inspirational news for TNBC sisters.
Scotbird I will seek out the thins slices of joy thread. I spoke with a wise one just recently who told me thinking positive thoughts is good but doing things that give you joy is much more productive. More endorphins, more happy memories, more being present! Thanks for the lead to another great thread.
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Tworster- sorry you have to be here - especially being so young and a new mom! There are many women here who are years out from diagnosis who had positive nodes. What was seen on your MRI could easily be something else. I had a spot of concern on my breast bone - they said it could be bone mets or cancerous nodes or nothing - turned out to be nothing.TN is so scary, but really try to refrain from googling, because much of the information is outdated or much more pessimistic than it really is.
Please don’t let this take you away from that precious baby - let that be your safe place. It’s a really hard road, I know, but as you go along you’ll start to relax a bit. And come here for support or to vent or whatever you need.
Hugs.
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VL22,
Thank you so much for your reply! I am trying so hard to be positive for my baby and my family in the wake of all this. I have stopped searching as there does not seem to be very much information about it aka any positive information. I hopefully will come across some people who have been through this same diagnosis with the positive IMN and have survived. This is all just so new to me I have no family history and I feel very alone as all my close friends are healthy new moms and I don’t feel like a normal mom anymore (if that makes sense). I just can’t take anymore bad news so signed up here looking for positivity and hope in others stories. Praying the IMN adenopathy is benign and if not hoping it’s treatable!
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I am 40, stage 2 A, TNBC. Undergoing neoadjuvant chemo since 3rd April. I finished with DD AC and start 12 weekly Taxol next monday onwards. This will be followed by lumpectomy or mastectomy (awaiting genetic testing results) and rads based on surgery.
I feel the loss of control as the hardest thing to deal with. I am very lean, was quite active, maybe two drinks in a week, non smoker and I do not like sugar so did not have it and yet, here I am. What I have realized is you can be battling this disease even if you had done everything right in the past. The one thing that I am guilty of is stress. This year till now, has not been very kind to my family and I have worried endlessly about things, sometimes going around in circles. I feel the stress has played a major role in landing me where I am.
This is my day 8 after AC infusion. I feel good physically. Some bone pain due to neulesta. I have noticed for the last 4 cycles now that as soon as I start feeling physically okay I start stressing about what ifs. Mostly it is around mets. I wonder if we will ever get out of this shadow of ‘what if’ with every pain and ache we will have in the future, near and distant.
Thankyou for letting me vent.
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Tworster-1...The advice I’m going to give you will seem impossible today. But, after you are done your treatment I hope you’ll remember my words and smile to yourself. STAY CALM! Don’t let your mind take you into dark places...and stay away from Googling. In the beginning when I was first diagnosed I was on the computer every spare minute...sometimes in the middle of the night. All I accomplished was scaring myself half to death. Have trust in your doctors. Once you have a definite treatment plan in place you’ll begin to relax a bit. And, reach out to the wonderful women on this site. They will be your lifeline at this scary time. ❤️❤️
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Cathytoo,
Thank you so much for your advice, everything has been such a whirlwind since diagnosis it’s so hard to even wrap my head around it. I find myself clinging to hope especially in the stories of others with a similar experience. I just want to watch my little boy grow up! I hope I can get to that point of calm and trust in my medical team. ❤️❤️
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I have a story I need to share. My son went to his 8th grade dance with another boy and 2 girls last weekend. All became very good friends in 7th grade. Last summer I told him to invite them over to swim, but he didn't. If they go out as a group, I never drive. I thought my being bald and sick was the reason and I was ok with it. I did meet one set of parents at a school event where I was wearing a cap, so I assumed they'd figure it out. I know thathe told no one about my diagnosis.
So the night of the dance pictures are being taken at the one of thegirl's homes.I tell him I'm going in - he says ok. Very nice people, kids look great, the dad of the home we are at makes jokes about my kid being an orphan which is funny and I laugh. So this girls mom is missing. An aunt is there helping her get ready for the dance. The vibe just feels weird - I consider myself to be very intuitive.
Next day I ask my son, “where was her mom? Was she working."
He says, “don't you know that she died? Remember I told you?"
Ah, no. I think I'd remember that. He kept up the charade but then said maybe he “forgot" to tell me. He did not know how she died, he insisted. I looked up her obit as we spoke
She died only a few months ago. Anyone want to guess from what?
It took every ounce of my being not to sob right there. I cried later in the shower. This brought up so many emotions.
I just needed to share.
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Frog,
I have no family history of breast cancer and I've always been very active and fit. I eat mostly good, but allow myself a glass of wine and dessert on occasion. I'm now done with treatment because I was fortunate and I got a PCR from chemo. No evidence of disease was confirmed by post surgery pathology on May 7th. I sometimes think about another mutation happening since it's already occurred before in spite of my lifestyle choices. All those articles about preventing breast cancer by keeping a healthy diet, moderating alcohol, not smoking and regularly exercising are misleading and frustrating because breast cancer can't be prevented. I'm hopeful in the coming years scientists will better understand the various genetic mutations that contribute to cancer. I tested negative for the currently known genes linked to breast cancer, but there are more unknowns than known genes at this time. I wish you the best possible outcome from your treatments. I hope everyone is getting the support they need during their treatment.
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Frog,
I have no family history of breast cancer and I've always been very active and fit. I eat mostly good, but allow myself a glass of wine and dessert on occasion. I'm now done with treatment because I was fortunate to get a PCR from chemo. No evidence of disease was confirmed by post surgery pathology on May 7th. I sometimes think about another mutation happening since it's already occurred before in spite of lifestyle choices. All those articles about preventing breast cancer by keeping a healthy diet, moderating alcohol, not smoking and regularly exercising are misleading and frustrating because breast cancer can't be prevented. At best, risk may be reduced by lifestyle choices, but not prevented. I'm hoping with each day that passes scientists are getting closer to the true reasons 1 out of 8 women are getting breast cancer. My genetic testing came back negative, but I believe there are many other genes that contribute to cancer that aren't currently being tested because the science isn't there yet. I have rebounded quickly from my mastectomy and reconstruction so being active and eating healthy has helped my recovery. I wish you the best outcome possible and I hope everyone on this thread gets the support they need.
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VL22 - Thank you for sharing that story. I can see why you got so emotional. Those early teen years are such difficult ones. I hope maybe your son and that girl care close enough that they can share their experiences of being scared and insecure with their moms being sick. This damn disease is so indiscriminate and vicious. Too many kids have to face these hard realities far too young.
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VL22, I am sorry that you and your son (and of course, his friend) are having to cope with all of this. Children are very resilient though, and I hope that your son understands that every case is different, and that his friend's mom may not have been caught early, etc etc.
Hugs to all of you
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Teka! YAYYY!! Wonderful update!
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VL22, That is so very sad. I really feel for that girl and for you and for your son. It's so hard not to go down an emotional rabbit hole. I swear to god, we all probably have PTSD.
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So today my body was marked up for radiation. I've known since I was diagnosed (10/2017) that my likely path would be two sets of chemo, surgery, radiation, Xeloda, and then a possible clinical trial for Keytruda. I've had CT and PET scans before. The technician today was kind. Now I have three places marked on my body, and I'll begin my 28 radiation visits in early June.
Surely we are all entitled to those days when we just break down and cry, and this is one for me. It's been such a long journey, and I'm feeling somewhat like an object with my DMX scars and radiation marks. I'm struggling for the gratitude for my excellent medical care and the support of those who love me. I'm just - today - wiped out. The tears flow and I wonder, "Why now?" But I accept them, and know I will move on when I'm ready.
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Paula,
You are not alone. I wish we could all get together and have a group hug. Tears are part of the breast cancer package apparently. Radiation should hopefully not be too bad for you. I got burned for sure, but all in all it was the easiest part of the process so far. I will hope the same for you.
R
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aww Paula - hugs to you. It is a struggle for sure and the road is long. But you’re right - when you’re ready you’ll move on - day by day. The strength we all have really does amaze and humble me.
You’re in my thoughts. You got this!
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Paula - I had a very similar meltdown the day I was first marked up for radiation. It is completely understandable. It was the most exposed I'd felt in any of the treatment so far. Although the radiation therapists were very kind and gentle I felt like I was no more than a heavy object that was being pushed and pulled. I was face down so really couldn't see what was going on in the room. It felt very strange in an impersonal way. However, those feelings didn't return and I just finished up rads last week. Good luck with it!
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Does anyone know about the Olympia trial and/or Parp inhibitors for TNBC? Someone mentioned I should check it out, but I couldn't find it on clinicaltrials.gov. I'm not sure where to look.
Thx,
R
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