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5 Years Today

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robinbird View Drop Down
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    Posted: Jul 18 2020 at 11:02am
Good morning everyone.  I'm celebrating quietly today.  Today I'm 5 years out from my diagnosis.  I can tell you I was so frightened, but reading these message boards really helped me through.  I was TNBC 2B. I took 4 doses of the adriamycin and cytoxan followed by 12 weekly treatments of taxol.  I had a lumpectomy and I didn't receive a pathological complete response so I asked to be put in a clinical trial and my oncologist said no.  He did say he would put me on Xeloda and did for about 4 months.  I had a lot of trouble with foot pain so was dialed back from the full amount. I took the medicine for 2 weeks and was off a week. I also completed 25 rounds of radiation.

I have tried to eat right, take lots of vitamins, fish oil, tumeric and others.  I did not take supplements during treatment, only after.  Always check with your doctors.  I cut out grilled or smoked food, processed foods and added a lot of veggies.  I work out when I can, walk in nature, and became much closer to God.

I just wanted to post to give others hope.  I know reading about the ladies that made it 5 and/or more years really gave me hope.  Each of you are amazing, don't let fear control you.  Walk, enjoy nature, sit and listen to the birds.  Get a hobby, get out of your head.  Read up on keeping yourself and your immune system healthy.  

God bless you!







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Plume View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2020 at 5:39am
Thank you for your lovely and very encouraging post.  Also full of good common sense.

I have 2 more years to go to catch up with you!
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Marymom View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2020 at 6:41am
I have two more years too!  Congratulations...your victory is ours as well!  Godspeed to all!
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robinbird View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote robinbird Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2020 at 11:14pm
Stay strong!  You will both be there before you know it!Smile
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2020 at 9:25am
Congratulations on 5 years and enjoying life. 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarahtt99 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2020 at 7:33am
congratulation! My current situation is the same as you.

Do you mind if I ask more details like age and your daily routine? If not here, are you able to pm me?

I’ll finish my chemo in the next 2 months, then radiation and that’s it. Xeloda is new to me as my oncologist never mentioned this and he just told me to watch and see, no further options for me after the treatment. I am so worried as I am young and still taking care of my 2 kids (1 and 4). Any helps much appreciated.

Thanks a lot
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robinbird View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote robinbird Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2020 at 7:43pm
I had chemo, ATC and Taxol.  After that I had a lumpectomy and I still had cancer left.  I had read about Xeloda and asked my oncologist and he said it would be okay, so I took it.  It made my feet hurt and my hands swell, but my hair grew and I got through it.  I had to have the dosage dialed down several times because my feet hurt, but I continued to go to my full time job as usual.  It was very doable.

 I didn't take supplements during treatment, but started after I finished treatments.

After that, I started on D3, K2, Fish oil, vitamin C, vitamin E (which he surgeon suggested because it helps with pain where I had surgery where they checked the lymph nodes and the lumpectomy). I also take vitamin A too, but watch the doses most are too high so I take it only twice a week.  B-12 is the same way, some are far too high.  Get a normal amount and take it every day.

I don't eat meat that has been grilled and I try to eat fish, chicken, salads but have to throw in the occasional pizza! I stay away from sugar as well.

Clean eating and drinking, lots of supplements and exercise too.  Just walking a couple of miles a day helps.  I lift weights too....but not so much during COVID.

When I was 2 years out, I read on another board about long time survivors and most of them said they took lots of supplements.  I did research and found the ones that I thought were most important. 
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1maJ View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 1maJ Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 3:00pm
Hi robinbird, congrats on the 5years!  Such an important milestone.  Sounds like you were diagnosed around the same time I was.  I was 5 years out from diagnosis this past summer on July 14, and kept it pretty quiet.  I of course celebrated with my family, but decided to wait until my surgery date to fully celebrate.  I had residual cancer at the time of my lumpectomy in January 2016, and I could never get my doctor to be clear on whether the 5 year celebration mark was from time of diagnosis, or from end of treatment, so I guess I decided to wait until January :) 

I was a stage 2A, 3cm tumor, no lymph nodes involved, and had the exact same treatment you did, with Xeloda at the end when it was a brand new drug to try for TNBC.  I came on here often to chat with others going through the same, many of us trying to make a decision on Xeloda, and now I am happy that I did.

My health has been pretty good since.  I have some neuropathy in one foot, but nothing that stops me from doing everything I want to.  I have had some back and knee issues, which is nothing new for me, but currently those are in check.  I participated in the Livestrong program right from the start of radiation, and it was the best decision I could have made.  From there I joined a dragon boat team for cancer survivors, and I am not kidding when I say that I am grateful to cancer for bringing me to this awesome sport.  We actually qualified to go the Club Crew World Championships that were supposed to be held in the French Alps this past August ... but you know ... Covid 😭😭🥺🥺. But prior to that we were training hard during the winter season, and it really helped me feel healthy.  I can't say I have been good about exercising since the pandemic started, but I am buying a rowing machine now so that I can train at home, along with lifting weights.

Anyways, this group completely held me up after my diagnosis and during my treatment.  It was really important to hear the success stories, because I was scared, and Googling info on TNBC was NEVER a good idea.  I am cautiously optimistic that everything is going to be just fine.  I found that letting go of stress was really really important for me, as was letting go of things I couldn't control.  I also take vitamin D every day, took turmeric for a while, but now just drink lots of turmeric tea, but will probably start taking turmeric again since I know it is good.  I limit my sugar intake, which seems to be easier as I get older, but by no means do I deny myself of it completely.  I just have it in small amounts.  I generally eat well, and I did before diagnosis too, so the focus since cancer has been more on stress relief, being outdoors for dragon boating, and enjoying life.        
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2020 at 10:51am
Hi ladies,

I also recently passed 5 years since diagnosis.  Woohoo!!  I was diagnosed in May 2015, but had my very last treatment in September 2016, so decided that’s the date that I count from because my doctors have also been unclear (one says count from surgery date, one from final treatment, another said diagnosis—so I decided that we can pick the most meaningful date for ourselves). 

I was stage 2, and had ACT neoadjuvant chemo plus was in a trial with carboplatin and veliparib, and then had residual cancer at my lumpectomy.  At the time, nothing was recommended for people with residual, but literally a month after my surgery at the San Antonio Breast Cancer Conference, a paper was presented with early results on Xeloda being helpful.  I had to lobby HARD to convince my oncologist to prescribe it to me, with a long PowerPoint presentation!!!  It worked, and I took that for 6 months.  I’ll never know if Xeloda saved my life or not, but it did save my sanity—it felt crazy to me to have RCB2 and nothing to combat it; I really needed to know I could do more.  And here I am, happy and healthy and often forgetting about this very intense experience.  Approximately 6 months after I started Xeloda it became a widely accepted option for residual TNBC.  So glad I advocated for it.

I feel guilty I haven’t been on this site in a couple of years, as I know how great it is to read survivor stories.  When I was going through treatment and probably for about a year afterwards, I was obsessed with this site and reading/learning as much as possible.  This site was SO helpful.  But the good news about me not posting recently is that I really did start to forget about cancer and can sometimes go weeks and weeks without even a thought.

I actually don’t do anything in particular for regimen (I do keep up with my doctors but for scans, I am down to an annual mammogram at this point), and I do eat a lot of vegetables.  But I don’t have a perfect diet and I do drink some wine.  I exercise a fair amount but am not about to win any triathlons ;-).  But now I’m being reminded From these posts that I mean to take vitamin D and turmeric—I used to and do believe that’s a good idea.

I do feel like I have experienced the silver lining of enjoying and appreciating life EVEN more after cancer (I do think I already was a happy, appreciative person before though).  I adopted the mantra “say yes to everything!” So when opportunities came up to spend a month in India, to repel down waterfalls in the Azores, to swim in the freezing New England ocean on New Years Day each year, etc, anything that sounds fun—I’m all in!

I am grateful for the people posting on this site, and ImaJ—that includes you!!  I remember emailing back and forth with you when we were taking Xeloda.  All of those connections really helped me a lot.

Good luck to everyone and congrats RobinBird.

Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2020 at 12:25pm
Dear TNBC family,

This is really an amazing site filled with remarkable women. I found it reinvigorating
to read all the marvelous stories. Yes, five years seems to be an important milestone and it is an important accomplishment!!!

Tulips, consensus seems to be day of diagnosis. But, who knows how long the cancer has been in your body undiscovered. In my daughter's case it was estimated her cancer started five years before diagnosis. So, a very imprecise exercise.

with my love to all here,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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1maJ View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 1maJ Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2020 at 2:04pm
Hi Tulips!!  So great to hear from you!  I can thank you for being instrumental in helping me make the Xeloda decision, lol.  You were such a scientist about it!  So thank you!  I do not regret it one bit :) Glad to hear you are enjoying life!
Diagnosed with stage 2A TNBC, no lymph nodes, in July 2015. AC, Taxol, lumpectomy(Jan 2016), radiation, Xeloda, in that order. Finished Xeloda in Oct. 2016.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2020 at 10:28pm
Wow - so many heartfelt messages.  I celebrated 5 years (time of diagnosis) at the end of May.  This forum was a lifeline for me during treatment and afterwards.  I remember receiving the news that even though the tumor was caught early, I was lymph node positive.  I remember hanging my head in despair when my chemotherapy was delayed due to a second surgery.  I remember wondering if I would watch my son graduate high school.  I give thanks at the end of each day now that I am still here.  Even though life has gotten back to a sense of normality, I try my best not to take anything for granted. Everyone on this forum is so precious in my eyes.  We have all gone through a terrible time (and some who read this are actively going through it).  I want to offer everyone who reads this HOPE.  There was a time when 5 years seemed an awfully long time away.  There was a time when I thought about TNBC every single day.  Eventually, life began again, and I don't think about it every day anymore.  I laugh, I sing, I enjoy!  I recently lost 18 pounds and am still trying to lose more for a healthy BMI.  I first learned about turmeric from this forum, and I take it daily, along with vitamin D3. I had to smile when I saw the posts above from Donna, Tulips, and Steve.  I remember you!  I am blessed and grateful.  I am so thankful this forum is still here.  I send my love to everyone.  
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