Calling all TNs

jrominger

cc4npg and Ksteve. Thank you for posting and giving us all the positive vibes!! We are grateful. My wife is sitting in the chair as we speak getting Taxol #5 of 12. We WILL be where you are in 9 yrs by God’s Grace!!!

santabarbarian

Hockey Chick what helps me mentally: doing those things I can do, to help my own health, enjoying today as much as possible every day, and connecting with my loved ones.

I take a ton of supplements eat a mostly vegan whole food unprocessed organic nutrient-dense diet, <20% fat. Fish, and infrequently meat or dairy. I exercise intensely. I take melatonin and metformin and many McClelland protocol OTCs. I'll do anything that gives me another ~2%+ survival benefit, as long as it won't hurt me!

I feel great doing this program (bonus!) and it makes me feel satisfied I am doing my utmost which I owe to myself, and which I feel I also owe to my sisters less lucky-- not to squander my luck to be here but try to enhance it by good practices. I also have a few complimentary therapies I do. I am hugely grateful to have the means to do things not covered by insurance, like high dose C, which I feel have helped me a lot.

I am also lucky to not be an over-worrier. I believe my body to be healthy and cancer free and I try my best to help it stay that way. While knowing I might recur, so also not putting off fun and living, in case.

Try to do the things that make you feel well-tended, healthy, happy, and well -- which my be other things than mine-- and the hours spent in this mode fill up more of your day, and displace the worry.

rockymountaingirl

HockeyChick, I think all of us have trouble at times staying out of the dark places. As others have said, time will help. But while you are waiting for time to work its magic, you might find it helpful to talk to a social worker or therapist who is experienced in working with people who are facing the same kind of fears that you have. During my treatment, I was able to work with people who taught me how to think and act in ways that help me to keep fear from taking over my life. That doesn't mean I am never afraid. But when I am, I know what to do to get past the fear. In my case, one thing that helps a lot is giving my brain a stern talking-to. Like this: "Brain, that is just crazy talk! We are NOT going to go there!" That works for me because I tend to think irrational thoughts when I am afraid, such as "you were unlucky enough to get TNBC, so you will also be unlucky enough to not survive it." Which is, of course, crazy. Lots of people do survive TNBC. I also feel better if I do something that I find relaxing and pleasurable when fear is trying to take over.

What works for me may or may not work for you, so I can't tell you how to deal with your fear. But there are many ways of dealing with fear and anxiety, and if you can figure out which ones work best for you, you may be able to stay out of the dark places altogether, or at least scramble out quickly if you find yourself in one. Good luck! And ask for help if you need it -- don't let this make you miserable.

VLH

I don't recall hearing of any other men with TNBC. Although no one wants to join this "club," it's nice that you unexpectedly found a kindred spirit, Mia.

Lyn

angelfaith456

Forgot to post! August 18th 5 YEARS in remission!!! Yea!!!

MountainMia

Hooray angelfaith! Congratulations! I wish you many more years of good health.

santabarbarian

Me too angelfaith. Hoping to be in your shoes in 2023!

VLH

Wonderful, Angelfaith!

Lyn

ScotBird

.3 years today since my final rads appointment. NED ever since and appreciating life every day. And starting to really believe that it won’t come back. Good luck, love and positive healing thoughts to every one of you going through this. It is hard work

Lookingforward66

It has been quite a while since I have posted. Haven’t even visited for a while. I will be 7 years in December. I was 66 at diagnosis & will soon be 73. Life is good. I exercise some but not as much as I was doing. Arthur & his ritus is part of my problem. But do what I can. This is doable. Keep a positive outlook as much as you can.

Best wishes to All,

Marsha

jrominger

Bless you Scotbird for coming back and providing this wonderful news!! Your just what the doctor ordered today!!!! Blessings to you and it will NOT return!!

jrominger

You too lookingfowsrd66. Thank you!

Your photo is fabulous!!

notdefined

Thank you to all the postings here about the good prognosis. It really is great to hear these stories!

notdefined

I just talked to the surgeon, and he said I had 3 lymph nodes tested which all came back negative for cancer. He also said I had a pCR, so chemo did its job properly! I'm so happy!!! I can breath a little bit more each time I reach a milestone, but being triple negative I know I will need to change some things about my lifestyle and habits. I am committed to getting back into shape and doing whatever I can to reduce risk of recurrence.

jrominger

notdefined. We are so pleased for you!!! pCR and clean nodes sounds like a fantastic future!!! Life style changes will be easy after all you’ve been through!!! God bless and congratulations.

santabarbarian

wonderful, notdefined!!!

HappyAnyway

High five, notdefined!

kber

awesome Notdefined! Such wonderful news

Snaffle53

Just starting my journey with TNBC after official diagnosis today. No tumor found in my breast. So, it was just chance I discovered this. Chemo education this Tuesday. Port placed Wednesday morning with first chemo that afternoon. 4 rounds of AC every other week. Then 12 rounds of Taxol once every week.

Four weeks rest before surgery (yet to be determined how aggressive). Then 4 to 6 weeks of radiation.

I have breast cancer on both sides of my family. As well as my father and his brother with prostate cancer. I will have genetic testing next week.

I want to have a BMX to reduce chance of recurrence to as low as possible. Time will tell. This all doesn’t feel real yet. I’m sure that will change soon.

So grateful that there are many who have traveled this road before me. This site and people here are a blessing

jrominger

snaffle53. We are right here with you. My wife has done the 4 AC and 5 of the 12 Taxols. Surgery 3 to 4 weeks after. Then maybe radiation depending on pathology!! She has the BRCA2 gene mutation so she will do DMX and once all healed will have ovaries and Fallopian tubes removed. She is and was totally healthy so big change of events for us. So many many helpful folks on these pages!!! God bless and you will conquer this!!!

Snaffle53

Thanks so much. It really helps to know so much support is here

Katiekins

Notdefined, congratulations how wonderful! After the past several months of treatment, so happy for you. Hoping and praying the rest of us have such an awesome outcome!

cc4npg

HoneyChick... the only thing that worked for me was prayer... and time... and surrounding myself with other people who kept me busy. Vitamins also help and eating good because at least you're taking control of "something" and these things will help curb the dark places because your brain will be getting the nutrients, vitamins, sleep, etc that it needs in order not to "go to that ledge". I still become paranoid when something hurts, especially if it's a lymph node under my arm! Do your best to LIVE each day... do something fun... take walks. The black cloud continues to follow us, but try to find the rainbow instead of the black cloud. If reading things frightens you, then STOP reading. Each person is different. I also see a counselor every couple weeks and have found that helps. Sometimes we just need to get things off our chest... to cry without someone cringing or wondering how to help us or trying to find the words that will make us stop. Counselors are wonderful for this!

VLH

Snaffle53, I'm sorry to read of your recent diagnosis, but am glad that you have a treatment plan in place. You mentioned no tumor in your breast. If you're comfortable sharing, how did you get diagnosed (lump in the chest wall, mass noted in lymph nodes during physical exam or mammogram, etc.)?

in general, most studies suggest that your survival odds are the same with a lumpectomy and radiation or mastectomy, but with your family history, I can understand why you're leaning toward the latter. With doing chemo first, you have time to do your research and perhaps interview a couple of surgeons to guide you in weighing the risks and benefits. If you haven't already done so, you may want to join the forum for those starting chemo.

Lyn

santabarbarian

snaffle my understanding is survival with MX or with LX+ rads are basically identical. Make sure before you use this as a basis for decision. Its wise too to have a second opinion at this juncture if there is any doubt about the best approach. We are a scrappy bunch of TNBC warriors who will support you!

Snaffle53

VLH, I’m extremely lucky to have found the cancerous lymph node because I have no symptoms.

Long story. My sister had a heart attack last January. She got a stent but needed double bypass surgery as well. The cardiac hospital in Oklahoma where she had surgery was absolutely top notch. They offered a CT heart scan to check your cardiac risk for only $50. So I had the scan.

The scan showed my heart was great but in the lung tissue included in the film they could see tiny nodules in my lungs. They recommended I see a Pulmonologist. So, when I came home to NH, I set up an appointment. Meanwhile, my PCP also got the scan results and said Pulmonary consult unnecessary as nodules this small are usually nothing. I went ahead to see a Pulmonologist anyway.

He ordered a baseline CT of my lungs even though he too thought nodules of this size to be nothing. It was in that CT of my lungs that an enlarged lymph node was seen. Biopsy was recommended.

The rest is history. Without that heart scan I still would not know I have breast cancer. My late August annual mammogram would have been normal. So I suspect I would have eventually been diagnosed when the cancer metastized to some major organ.

So I am very lucky indeed

VLH

Snaffle53, thank you for sharing your story. Yes, you're fortunate indeed that you identified a problem despite a rather atypical presentation. Your GP was correct, but it's good that you persevered. My baseline CT revealed a couple of lung nodules, but they hadn't grown six months later so they were apparently the scenario like your GP described. I hope that all goes smoothly with your treatment.

Lyn

moth

thanks to Angelfaith, Scotbird, cc4npg, Lookingward (& anyone else i accidentally missed) for checking in & congrats on your NED!

HockeyChick - I'm sorry you're feeling the fear gripping you tight. I ditto seeing a counsellor just to get it off your chest. I think part of the problem is that we carry this unspeakable fear, nobody in our families or friends wants to hear it, or we don't want to tell them (because they'll either dismiss it or will affirm it - either one is not helpful). Trained counsellors know how to hear this fear and let us explore it in a safe space. It might make you feel better to get it out there and talk it through and get some ideas about how to control your thoughts when you need to move the fear to the side for a bit while you do other things.

My other technique has been keeping very busy. This is the time to throw yourself into a passion project, volunteer for something, a political campaign, a social issue, a craft, whatever. I entered a full time bachelor of nursing program (3 years continuous) while I was still in rads last September. Just a few weeks ago, a year after finishing chemo, I finished 1st year of nursing school (with straight As! Take that, chemo brain! lol)

I'm not by nature an optimist & my family has long running jokes about my ability to identify to potential ways things will go wrong in any situation, but I actually don't spend much time thinking about the future (& I spend hardly any time thinking about the past). I'm doing this thing now and that's what matters. Just find something to engage you right now and focus on it and let the future and past take care of themselves.

hang in there - it gets better

LoveMyVizsla

Article about abraxane as neo-adjuvant treatment, instead of taxol.

https://www.massey.vcu.edu/about/news-center/2019-archive/massey-oncologists-echo-findings-that-suggest-a-modified-drug-combination-may-reduce-risk-of-recurrence-for-some-breast-cancer-patients/

LoveMyVizsla

Hello, my name is LoveMyVizsla, and I have scanxiety. LOL. Tomorrow is my annual MRI and last 6 month mammogram and check up. After that I’m back to yearly. I’m not seeing my MO, but one of her staff instead. Wish me luck.