Share Your TNBC Story
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Thanks Lily for your sharing. It's the best inspiration for me especially when 2018 is coming to the end. I should look forward to a better tomorrow. We all should!
Happy New year
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After finding my own lump (due to noticing a pink spot on my breast), I was diagnosed in July 2018 with a 3.8 cm TNBC IDC tumor, and a 3 cm lymph node that lit up on MRI, plus 3 other swollen nodes. I was given 6 rounds of Taxotere and Carboplatin, every 21 days. I just had a lumpectomy (surgeon took former tumor site, cancer-affected node, and 3 sentinels) a week ago 12/28, and I just received word of a pCR!!
In addition to my chemo treatment, I was also very interested in doing any safe, well-tolerated, scientifically-valid things I could do to improve my response to chemo and weaken my cancer. I had a consultation with Dr Keith Block in Chicago, an integrative MD and cancer specialist, who made a lot of recommendations about exercise. supplements, and diet-- things I could do to fortify my system and better withstand chemo, or things that could assist in killing cancer. I got off sugar, simple carbs, and alcohol entirely. I maintained a ketogenic but yet low-animal-product diet. (Mostly veggies, nuts and seeds, deep sea fish, berries, coconut yogurt, avocados). Low eggs, low dairy, all organic where possible. And I began taking 15-20 supplements daily... (deep sea wild caught Omega 3 fish oil, curcumin, ubquinol, quercetin, selenium, D3, B6, Alpha Lipoic Acid, Hawthorn, melatonin, reishi mushroom, matcha green tea, super greens powder, whey protein isolate, and a few others.)
The complimentary medical practices I used were IV vitamin C & IV glutathione, Hyperbaric Oxygen sessions, and Infrared saunas. I asked my MO to prescribe metformin for me, as I had read that people who are on it have fewer recurrences/metasteses. The other practices were a vegan heavy keto diet, intermittent fasting/ "fasting mimicking" prior to each chemo, and interval training. I also kept a lot of heat on my tumor as it was very near the surface of the skin and heat causes stress to cancer cells at a temperature that normal cells recover from (109). Fasting mimicking was a huge help to lower SEs during chemo. And ketones also weaken cancer cells, while fasting fortifies healthy cells (see Dr Valter Longo USC).
The interval training was recommended by Dr Block whose idea is to give the heart a message that it is supposed to be building itself up not slacking off. he has an easy routine as a minimum: Do 30 sec @ moderate pace, 30 sec @ intense pace, & do this 3 times, then take @ 3 minute rest. Now repeat total cycle 2 more times (3 total). 18 mins including 9 mins of resting. He wanted this as a minimum 3-4 x week, plus stretching yoga or pilates the other days.
He had other recommendations like no lights in bedroom during sleep, a cold bedroom, etc.
One of the things he does uniquely at his center is to change the chemo delivery. He will do "chronomodulated" chemo which means timed for greatest bioavailability in the 24 hour clock (both re the drug's action and your cancer's 'awake' period) and also it is dripped in very slowly over more time from a fanny pack. He is innovative with the delivery and this allows people who 'can't take' further chemo to be able to take it. I was tempted to go to Chicago for treatment but found a naturopathic physician in my area who was able to help me get those things right here. I did not get chronomodulated chemo, but after finding out Taxotere is optimal at 6 am and carbo at 4 pm, I did persuade my center to give me the Taxotere first thing in the am and let me come back in late afternoon for the Carbo.
I think every little bit helped... it definitely helped me be stronger during treatment... and I am happy to share what I did in the hope it can help others! I know there is a giant element of luck in getting a strong response to the chemo, and I was very lucky there.
Santa Barbarian
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santabarbarian, thank you very much for sharing your story and what has helped you!
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Hi Hariry, I wish you the best of luck! Stay strong and positive! There is life after TNBC. I am new to the site so if there is a way for you to message me privately, I would gladly speak with you. Take care of yourself.
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Hi Santabarbarian,
I just read your post and wanted to commend you. I should have shared more on my experience as I also changed my diet and exercised throughout chemo treatment and continue to do so today. After chemo, I was completely clear from all scans. After surgery all pathology results came back clear as well and I truly believe chemo with the help of diet and exercise contributed to that.
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Thanks Lily. I want others to know about all the naturopathic assists! To me they made a huge difference. Before I got deep into my chemos, I felt BETTER than I had felt pre-diagnosis... no little aches or pains (thank you curcumin, fish oil). Lots of energy. Great sleep.
I hear so many people say "eat anything... have a milkshake" and that is the VERY OPPOSITE of what this expert cancer doctor has to say. I feel like if you want to live, you need to be radical-- willing to fight, and do all the uncomfortable stuff involved in changing the lifestyle habits that may have helped your cancer grow initially. My whole goal was to make my system very unfriendly to cancer. I knew there was not a guarantee but I wanted nothing to reproach myself for if I had a bad outcome. I figured if I did it all, then I would have no regrets, and I'd be able to look my kids in the eye and know I tried my best.
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My story has so many twist and turns I don't know where to begin. I have been going for mamagrams each year in my mid40's for lumps found in my breast. Each time I would make an appointment with the gynocologist to schedule a mammogram and then ultrasound. The results were the same each year. It's a cyst no concerns. If it starts to bother you we could aspirated. In 2016, I did not have a knot but scheduled the yearly mammogram in January and it was clean. May I found another lump. After receiving the clean mamogram months before, I ignored the lump with my busy life, demanding job and active kids thinking yet again another cyst. July called gynecologist who later performed an ultra sound and scheduled me to see a surgeon 2 months later. After persistent calls with the surgeon, I was given another mammogram in late August instead of the scheduled September appointment. I was diagnosed in September 2016 with erpr+her2- with stage 3a 8+cm and 5 lymph node. Treatment started in October 2016 with AC and taxol, radical mastectomy March 2017. The large mass after surgery found to be triple negative and further testing sites of her2+. Went for a second opinion to a breast cancer specialist with support of my oncologist due to the unusual change in hormone positive to tnbc. After radiation treatment July 2017. Started physical therapy specialized breast cancer after surgery for treatment due to veins, nerves sticking to facia on the left arm. I felt fortunate to have a plan and receive additional treatments of exolda to address the newly diagnosed tnbc and Herseptin/perjeta to address the her 2 which was completed in July 2018. I wanted the most aggressive treatment I could recieve. I was positive throughout treatment with the attitude I would fight and beat this cancer. I had a wonder supportive medical team, support through work and family. I changed my diet throughout treatment began yoga, exercise, vitamins, extremely hot Epsinsalt baths even coffee enigmas. I put in the work to fight this. Lots of scares along the way with blood clots, radiation scar on the lungs, small spot on my femar and so on. I scheduled and began latis flap reconstruction surgery in November 2018 after two long years of treatment thinking this was the prize at the end of treatments. In late November completed scans to follow up on a spot on my femur that did not look like typical metastatic cancer and identified uptake in the mediastinal lymph nodes. Several biopsies on femur and lung and I am now waiting on final report/results for metastasis to the mediastinal lymph nodes and completely terrified. I am discussing treatment options such as clinical trials which are over two hours drivefor triple negative breast cancer. I have been researching to educate myself and look forward to learning from others from this website
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I am so glad to see your story. I just received the news that my cancer has spread to the medistisnal lymph nodes and will recieve final report this Thursday to confirm TNBC. Thank you. I don't often see positive stories with mets tnbc. You give me hope when I need it most. Best wishes for you and your family
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diagnosed with stage 1A DCIS tnc. Tumor 1.1 cm, lumpectomy clear nodes (3) and margins. Still did oncotyping as they thought it might be slightly ER+ ... confirmed it's really TNC. On second round of TC of four. Feeling lousy but ok considering. Debating DIEP flap ... don't want to go through this again!
Grade 3 so thinking through more surgery rather then radiation
53, mother of 4, BRCA- but an unknown CHK2+. Insurance great, live near NYC so treatment options abound. Saw three docs before we made a decision.
Not enjoying chemo or Neulasta
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Marg, I am currently receiving proton rads at ProCure in New Jersey (Near New Brunswick). I am very happy with them. My left sided TNBC (lumpectomy +rads) had me worried about heart/lung issues down the line.
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Hello, I was diagnosed 3 weeks ago. I have read the pathology report. I have my first appointment with the surgeon in 2 days. I’m overwhelmed and scared. Where do I begin? What questions should I be asking? How did you decide which course was best for you
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Katiekins, I am sorry to welcome you here, but welcome. This is a good place to learn and receive support. Do you have TNBC? It's a lot to take in at first. You might want to begin by going some reading about TNBC. Do you know what stage you are? TNBCs are sometimes treated with chemo first, before surgery, to shrink tumors. You will have time to let questions arise and develop as you learn more about your team's planned treatment. You can also get second opinions on the things that you feel uncertain of. The surgeon was my first doctor visit after diagnosis but she sent me to an oncologist to do chemo first.
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Hi, I was diagnosed on Abril 7 and are scheduled to have a double mastectomy on May 14 ( I chose to have a flap surgery). My diagnosis was Invasive Carcinoma, HNG, DCIS, Stage 1A, Grade 3, Triple Negative...I was told this type of BC is very aggressive as it doesn't respond to treatment...also, since I have a mutation to the gene T145 my onco recommended a double mastectomy. I had dealt with kidney cancer (lost 1 of my kidneys) 4 years ago and cannot do chemo do the damage it would cause to my kidney. I suppose the only treatment for me would be to have both breast removed as a preventive measure) and hope that it doesn't some back!
This is my 3rd time dealing with cancer and I tell you, it does not get any easier! I actually feel like it's getting harder to deal with now a days!
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for those newly diagnosed here is a pamphlet with a TNBC overview
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Thanks for your quick response. From my reading of the pathology report yes it is TNBC. Were you able to work while you had chemo? I’m wondering how long I’m likely to be out of work if I have surgery. I don’t know the stage but it is grade 3
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Katiekins and Triplerosie, we want to welcome you to our community! We know this is a difficult time, but we're all here for you as you begin this journey. You're in the right place for support and encouragement, as well as advice and guidance from this knowledgeable community.
The Mods
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Response to chemo differs person to person and some people work but others don't. I am self employed so I took it easy but worked part time. Sometimes it's more important to rest and heal... you'll have to see for yourself how you feel.
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thank yo
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Hi Katiekins,
I was dx TNBC Nov 17 St 1
Lumpectomy was done, followed by chemo and radiotherapy. It was not easy but bearable my dear. I continued to work but cut down the load. My family and I continued to go out shopping, short distance travelling... Trust me, you can do this. There'll light at the end of the tunnel.
Hariry
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Hello everyone. I hope this finds you all having a good day. I just want to update how life is going. It is almost 2 years since I had my needle biopsy and was told there was no indication of cancer. But an excisional biopsy done in July 2017 turned into a lumpectomy and in
i saw my oncologist on Thursday last week and, to my surprise, she has terminated me from Cancer Care MB and I will see only my GP in future. She is sending his office a care plan about what she feels should be done over the next 3 to 5 years, but apparently he is under no obligation to follow her plan. So, after a year and a half under her care, with three series of scans and other tests, I am done. I am pleased to be considered cancer free, but still a little concerned about recurrence. If anything comes up, my doctor is send me directly to the surgeon. But now I feel that I can move forward and, not forgetting the last two years, be thankful for how things have gone.
Spring is slow to come this year, and it has been very dry, so the farmers are out seeding and keeping their fingers crossed for rain. We have crocuses blooming in our flowerbeds, with tulips and lilies now between three to seven inches high. Hubby is planning to mow for the first time this year.
Now must go but wishing you all the best and will be back soon. Hugs,
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Sounds great. Am happy to hear that kind of stories. Wishing you well all the time. As for me, I am in remission for 8 months now. Looking forward for many many more years to come.
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Librada, I am wishing that for you as well
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Lily, I am so happy to read your story! Wow! What a miracle! Hope your pregnancy is going well! It sure sounds like your life is!
Although this website is a great place to share frustrations and fears, it is likewise nice to read about occasional "good stuff" .
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Mas1129, It is terribly hard to go through this without the one you loved by your side. I totally understand as I lost my husband of 25 years on Oct. 22 2017 to Multiple Myeloma. My adopted son committed suicide shortly after. It seemed I was finally getting my life pulled together when I got the diagnosis of tnbc. I have to admit I was more than a little angry that John is not here for me when I so desperately need him. Something happened when I had my mastectomy that that changed this for me, and I am much more at peace now. I also have family members who live close by who are my very needed support system. I am sure your family will be there for you to lean on when needed! I hope that you breeze through your treatments. I am getting my port for chemo put in tomorrow...will admit I am apprehensive about that! If you ever need someone to talk to...just drop me a line.
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Hello Everyone. After loosing my husband in 2017 to Multiple Myeloma, and then having a very dear friend who was like a son to me commit suicide shortly after, I was just starting to get my life pulled together when I went in to have a mammogram for a lump that had been checked 6 years ago and found benign. It turned out to be tnbc. I had a right side Mastectomy on May 14 with three lymph nodes removed. They came back negative but I was positive for it in the channels. My chemo port gets put in tomorrow. I have 4 sessions of AC followed by Taxol or Taxotere...I cannot remember which one he said or how many sessions. I am a little apprehensive about dealing with the side effects but have decided that I am NOT going to let it sideline my life! This site has been a godsend and I look forward to sharing with people who are fighting the same battle.
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grateful2balive and Fetherhd, we are very sorry you find yourselves here. Fetherhd, it sounds like you have really had a more-than-sad and stressful few years. We are so sorry for all you have been through, and now needing to process a diagnosis and treatment. We are all here for you.
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Fetherhd, you have the perfect attitude! Go get treated, but live your life at the same time. Best wishes
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Hello everybody,
I was 54 (april 2015) when I first was diagnosed with breast cancer. However my TNBC story only started in march 2018.
End 2014 I had some pain in my left breast. As the majority of my family are heart-patients, I first went to the cardiologist. When finally discovered, my tumor was already about 6cm.
After a year of treatments (neo-adjuvant chemotherapy, lumpectomy and radiotherapy) I thought I got rid of cancer and rushed into "normal" life.
Unfortunately, it reappeared in the skin after a few months only. Considered as lightly ER/PR dependent I was treated with several hormonal therapies (Femara, Nolvadex, Affinitor) but each of them either didn't help at all, or only helped for 1 or 2 months. In my country, before being allowed to switch to a different type of therapy, we need to prove failure of 3 hormonal treatments, which meant in my case a loss of 10 months before starting Ibrance + Faslodex. I had full faith in targeted therapy and my markers soon started to decrease. However, after 2 months it stopped working. A new biopsy and sequencing showed the cancer was now triple negative, with an issue on AKT1.
This opened a new range of possible treatments. I started with Xeloda, followed by Halaven. None of them helped. So we moved to platinium chemotherapies : at first cisplatin + radiotherapy which helped a lot locally (on breasts skin mets where I received radiotherapy) however other skin mets still grew. A pneumonia followed by pleurisy prevent me from getting new chemo begin 2019. I started Carboplatin April but it didn't help at all. However, as we say in French : tout vient à point à qui sait attendre (good things come to those who can wait), I'm now selected for a immunotherapy trial starting on 19/6/2019. (NCT03707808). Bones mets seem under control with XGEVA. I feel blessed vital organs are still free of cancer and that I'm allowed the trial.
Although I'm not writing a lot (English is only my 3d language), I get a lot of energy from this site and from all of you. I couldn't find yet TNBC stage 4 (grade 3) long term survivors, but I'm sure they exist. I take up the challenge to become one them ! :-)
I hope we'll all be able to live lots of beautiful years and send you all lots of courage. We're warriors ! and we'll win this battle !
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Dear Yaelle,
I have no word after reading your post. I have had a battle lasted 7-8 months and I thought it was painful... Until I read yours.
You are truly brave and a true warrior.
I visited a dear relative today, at her 70s, terminal stage of kidney ca. I was kinda overwhelmed after that trip. I cannot foresee what lies beyond. I am scared, at times.
C'est la vie...
I wish you all the best and I'm quite sure you'll be one of the long term survivors!
Hugs,
Hariry
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Hi, My name is Kathe. I’m now 60 but was diagnosed on my birthday in 2017 with triple negative stage 3 metastatic breast cancer. If that’s not enough my tumor was not in my breast but was in my armpit attached to what they call the tail of the breast. In September of 2017 I had an axillary resection and lymph node removal. My tumor was approximately 7.4 cm x 6.8 cm. I then started my chemo therapy in October of carbo and taxol for 12 cycles. It was supposed to be followed by 4 cycles of AC but after 1 cycle my neutrophil count dropped to 100 and both myself and oncologist agreed not to continue with that avenue of treatment. I then started on 6 weeks of dose dense radiation and then I had 6 cycles of capecetabine orally. My survival rate was in the upper 90 percentiles. I had surgery first and had what my surgeon calls clean margins. Nothing left behind. I had a circulating tumor cell count that was zero. And now cont to have all negative scans. This September will be 2 years since surgery. I am forever grateful to all my doctors at Duke Cancer Center in Durham NC and ultimately the good Lord who gave them the wisdom to be able to treat this nasty disease.
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