Calling all TNs

rdeesides - I meet with my MO tomorrow and will learn whether I'm doing radiation AND Xeloda or, hopefully, radiation before Xeloda. I'm bigger than you - 5' 10" and 180; I'm curious about my dose. I lost 25 lbs two years ago and need to lose that much again to be in the healthy zone for my age (64). I'm watching the Xeloda board as well.

Thanks to all for the good TNBC info here!

Paula

Rebekah - I think I’m doing a great job with anxiety about mets, but then I think I have a “symptom “ and it is all I can think about. And I tend to keep it to myself, because I dont feel friends/family can “get” it or I’m being tiresome. This past week I’ve had pain in my jaw and tingling in my face and scalp. I do have seasonal allergies and I am on Tamoxifen (I had that ER+ tumor) but of course my first thought is brain mets. It is a struggle. I also find myself being less concerned with my appearance. I don’t look like a hobo or don’t shower 😝but I’m not really putting much thought into my clothes when I go out and haven’t bought anything new. My new hair is a true mess, but I just let it be.

I loved Ativan, but I stopped taking it because I was “needing” it.

I’m a big runner and as I get back in the groove I do find it relaxes me and helps me sleep better. The busier I am the better.

There is a Gilda Radner house near me and I hear they have great programs. I’m not much of a joiner, but if I could get out of my comfort zone and get involved it would probably help.

Cocooncat - yes, I hate cancer.

A4ggy - I was recently on the John Hopkins Cancer Center forum where people can ask questions and they are answered by a breast cancer expert. Someone asked about sugar feeding cancer and she responded that this is a myth with no scientific support. I understand playing it safe and sugar is not good for us, but I don’t think you should stress about those jelly beans

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!

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

Happy Mother’s Day ♥️♥️😀

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

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. ❤️❤️

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

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!

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.

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.

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. ❤️❤️

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.

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.