Blessed to be 10 years out.

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Meggy
Meggy Member Posts: 530
edited December 2018 in Triple-Negative Breast Cancer

Triple negative 10 year survivor. I almost can't believe it is 10 years. Makes we want to cry. I did extreme things to get rid of the Tripple Negative cancer. I was a single mother of 2 young kids with no one else to raise them. I did more chemo than recommended and then an extreme version of the low fat diet (20-22 grams of fat a day for 2 or 3 years) plus 3 hours of exercise per week. I did everything I could to starve that cancer once the chemo was over. I created an inhospitable host. I thought of the low fat diet and exercise as treatment...like our Triple Negative version of targeted therapy.

I did neoadjuvent chemo (before surgery) so that we could tell if the chemo was working. That was such a good decision. It allowed us to gather so much information about whether the initial chemo that I was given had actually worked. I started with Adriamycin/Cytoxin (dose dense) first and it collapsed my palpable grape shaped tumor by the second dose. By the 4th dose, I could hardly feel it. Then I followed up with Taxol. (For some people the Taxol will do more than the AC.)

Then I did surgery and there was still some small amount of cancer in my nodes. (I did bilateral mastectomies and full disection of my affected arm pit). Because some cancer remained, I was able to argue for more chemo. If I had not done the chemo before the surgery, we would not have known that some cancer remained.

The next thing I did was I forced them to give me two more doses of Adriamycin/Cytoxin. It wasn't recommended with a break in between doses like that. The cancer could have mutated to resist it. I literally had to tell my poor sweet oncologist that I would go to Mexico and get it if she didn't give it to me. She then ordered it. After those 2 doses of A/C, I did 4 doses of Taxotere combined with Carboplatin. I did Taxotere because it is a cousin drug to Taxol (Taxol seemed to work well for me) but Taxotere attacks the cancers cells in a different way. I did Carboplatin because some small studies had that found that platinum-based chemo (Carboplatin, Cisplatin) worked well on Triple Negatives giving some women complete pathological responses. Those two follow up drugs (Taxotere and Carboplatin) are really hard hitting. My oncologist told me that I was really pulling out the big guns.

Then I did radiation.

After chemo and radiation was done, I was extreme with the low fat diet. I really believe that any remaining cancer cells were robbed of their needed fat. I was really impressed with the study that found that a low fat diet didn't matter for regular BC but made a HUGE difference in triple negative breast cancer. It was noted in a foot note. We really are different. I forget how much it helped but it was something like 30 percent less recurrences if the person ate low fat. Also, this was not an issue of good fat verses bad fat. The study cut down all fat. I ate only 20 to 22 grams of fat a day, It truly wasn't hard. Years ago, I started a thread on here about how eating low fat could save a triple negative's life. Great food ideas on there.

I also added exercise and not even that much. I think it was 3 hours a week. I walked my kids to school briskly, didn't stop walking...walked back home and once inside the house, I continued to walk briskly through the house until I hit a full 30 minutes of brisk walking. That's all I did. This was also based on a study that showed that exercise led to a significantly lower percentage of recurrences. I think it was 25 or 30 percent less.

My path in terms of the extra chemo isn't right for everyone but I had to try for a cure. (The extra A/C was a little crazy.) I had no one to raise my kids. They were ages 8 and 11. Now my eldest is a senior in college and my youngest is a senior in high school.

Hugs to all my sisters.

Meg

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2018

    Meg, this is so inspiring! There are many members and readers of our Community who needed to hear this. Thank you so much for sharing, and congratulations!

    The Mods

  • BadgerGirl2
    BadgerGirl2 Member Posts: 1
    edited April 2018

    Congratulations Meg! Wishes for 80 more! I had my first chemo on the day of your celebration! Thanks for your inspiration!

  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    congratulations


  • Moderators
    Moderators Member Posts: 25,912
    edited April 2018

    Welcome, Badgergirl! Best of luck to you as you begin chemo!

    The Mods

  • NinjaMeow
    NinjaMeow Member Posts: 41
    edited April 2018

    Congratulations!!

  • Meggy
    Meggy Member Posts: 530
    edited April 2018

    BadgerGirl2...The chemo is like gold... the best thing on Earth. Every little side effect...so worth it. The time flies by and then you're done. Go kick some butt.

  • beauz
    beauz Member Posts: 207
    edited April 2018

    Meg, Thank you so much for sharing, and congratulations!

  • Nifer
    Nifer Member Posts: 31
    edited April 2018

    Congrats!! Thanks for sharing :)

  • AngelNicole81
    AngelNicole81 Member Posts: 11
    edited July 2018

    I am an 11 year survivor. I was diagnosed at age 26 with stage 2 tnbc.

  • oxygen18
    oxygen18 Member Posts: 164
    edited July 2018

    Meggy, what you did sounds great, I am so happy for you, and thanks so much for taking the time to tell us about your heartening experience, I wish you lots more years of good health.

  • Dhanno
    Dhanno Member Posts: 104
    edited July 2018

    Awesome news .

  • Hariry
    Hariry Member Posts: 138
    edited August 2018

    Meggy and angelnicole,

    Thumbs up to both of you! Great spirit, good news...We all need that

  • elisa60
    elisa60 Member Posts: 88
    edited August 2018

    Meggy- I love your post. I was just diagnosed with TNBC. I really did not know what that mean and when I found out it scared the day lights out of me and all I was hearing that TNBC only had a five year survival rate. Congratulations on your 10 years survival. I hope That I will be as blessed. I have not started treatments yet but going to have my port cath put in August 7. Thank you so much for posting this. I need to keep in touch with you and others with TNBC

    Heart

  • Kayrem
    Kayrem Member Posts: 164
    edited August 2018

    Congrats Meggy - you gave and continue to give me so much hope

  • Snickersmom
    Snickersmom Member Posts: 926
    edited August 2018
  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited August 2018

    Hi, fellow TNBCer who is very happy to hear your stories! I am just beginning chemo. My tumor is much smaller after just one chemo so I am very encouraged.

    I too am being radical on diet, exercise and supplements. Like medicine. I want to give myself all the help I can get.


  • Meggy
    Meggy Member Posts: 530
    edited September 2018

    Hello SantaBarbarian! I am so happy to hear that your tumor shrunk with just one dose. This is such a good sign. We triple negatives have one blessing with our fast growing cancer....chemo often really works well on us...even better than on ER/PR positive breast cancer.

    Hugs to you and all our sisters.

  • Meggy
    Meggy Member Posts: 530
    edited September 2018

    Elisa60, when you read about 5 year survival rates it doesn't mean we mainly only live for 5 years. It just means that it was a 5 year study and they are telling us how many people survived at the end of that study. If you hit 5 years, it is a really good sign that the cancer may not ever come back. Every year that passes, your chance of recurrance goes down. Each year is such a blessing and gets your into better and better odds.

  • Winelvr1
    Winelvr1 Member Posts: 12
    edited November 2018

    Thank you for clearing that up because I saw that too when I first got diagnosed 21 days ago and I had a major melt down. Your story has inspired me and I have an appt with a dietitian tomorrow because I don't know anything about eating healthy.

  • Meggy
    Meggy Member Posts: 530
    edited December 2018

    Hello Winelvr, while you are doing chemo, you may not want to start a new diet. You need to be able to be able to take each chemo dose on time. If you aren't able to eat or get dehydrated, you might have to delay chemo. It's really important to take chemo on time to get the full benefit. For me, the only food I could eat after chemo was a particular Mexican restaurant's enchiladas. It had tons of fat but that was all I could eat. If I had denied myself that, I might have gotten too weak to take my next chemo on time. Also, diet will never be a substitute for chemo. Chemo saved my life. The low fat diet kept it saved by keeping any straggling cancer cells from building up.

    Also, and this is a bummer.....there is a link between alcohol and breast cancer. They know one drink a day increases the chance of getting BC by something like 20 percent. The assumption is that it could play a role in recurrence. I really cut it out for a few years and then limited it to when I really wanted to enjoy myself. Now I'm drinking 1-2 glasses of wine a week but none on some weeks.

    Many hugs to you sister. There are so many great people on here. Great place to come when you can't sleep or feel alone. You are never alone.

    Meg

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