Testing, treatment, side effects, and more.
Posted on: Nov 13, 2011 08:48PM - edited Nov 14, 2011 05:02AM by PlantLover
There's a very inspirational thread on the Stage III forum for Stage III'ers that are five years out from diagnosis to share their stories to encourage others.
I thought it might be nice to have a similar thread for those of us that are HER2 positive & Stage III. At first I was going to say Stage III & triple positive but thought it better to include those that were hormonal negative.
I think 2 years is just a starting point. I'm really hoping to see many with much longer stories to tell. I think Herceptin has changed so much for us. Thank you Doctor Dennis Slamon & all the courageous women in the trial!
Personally, I can't even post my own story yet because I don't officially hit my two year mark until November 23rd. Close ... very close! :-)
So, please share your story.
Posts 1 - 30 (40 total)
Nov 13, 2011 09:15PM redbud wrote:
This is my first post and feel compelled to reach out to you. I was diagnosed in May 2004, stage IIIB, 5/10 nodes,14 cm . I had chemo, surgery and radiation. Be strong , listen to your body and rest when you need to. Finished Zoledex and Arimidex last year. My life definately changed, but I am still here and enjoy every minute. Back to skiing and walking 2 years out from treatment. I hope to continue to see posts from you. Hugs to you.
Nov 13, 2011 10:09PM PlantLover wrote:
NeedtobeStrong - I think the beginning of a battle is often the most intense & difficult. Hang in there!
I'm sure there will be some HER2 sisters along soon to share their stories of hope.
Nov 14, 2011 03:30PM lkc wrote:
Great Idea Plant Lover1
I was dxed May 2005 with Stage IIIC BC, 12 positive nodes, ( out of 14 ) lymph and vascular Invasion. right mastectomy with abit of " dirty margins left ( ugh!) HER 2 positive, er /pr negative ,IDC , lobular and nipple involvement. Extranodal extension; blah, blah , blah. As a nurse I was stunned at this.
Anyway, that was then, this is NOW. I am healthy well and living large.
This is not an easy road for any of us when we're starting out. It will get easier. Once tx starts you will feel more in control. You will learn alot and become stronger with knowledge. Stay AWAY from googling; there is so much old incorrect data out there esp. with HER2 disease. Come to these boards for support and reassurance often. Ask for help, support from friends , meds for anxiety or sleep issues, have faith, be kind to yourself . I truly wish no one would have to go down this road, but remember you are not alone.
Nov 14, 2011 03:37PM - edited Nov 14, 2011 03:37PM by fightinhrd123
I think i was stage three, had chemo first, and complete response but i had at least 4 nodes pos b4. I am three years out, it gets easier as time goes on. I did the Neratnib trial also, but pretty positive I was on the placebo.
Nov 14, 2011 04:14PM roseamy wrote:
I was stage 3 her2 + but have been ned for 2 1/2 years.
I had neo adj tch x6, mastectomy, rads, herceptin x18, tamoxifen 12 months then bilat ooph now on arimedex, ld flap recon, fat grafts x2, lift and reduction on goodside and next week nipple recon.
I had been misdiagnosed at 36 and eventually dx at 40, I did not expect to be here now but I am and all is looking good.
As IKC says that was then this is now, today I am well and the future is looking promising.
Nov 15, 2011 03:33AM - edited Nov 15, 2011 03:33AM by JadeGirl
Thanks for starting this thread PlantLover and please keep the stories coming!!
I am a recent stage 3C-er (second time round with this beast, now 34 years) and am getting so much from reading about others like me.
I am getting my first shot of chemo right now, so am fueling up on the "little chemo soliders" to fight cancer physically, as well as fueling up on stories like yours to fight it emotionally at the same time :)
Thanks all for sharing, I hope to come back and share my experiences on this thread in 2 years time too!!
Nov 16, 2011 08:52AM PlantLover wrote:
Ikc - 6 1/2 years! Awesome!!! Healthy, well, and living large - now that's what I love to hear
Laura - Congrats on 3 years!
Roseamy - Wow you've been through a lot of recon! I hope things are turning out well. Also congrats on your 2 1/2 years.
I'm looking forward to hearing more stories and to you folks just starting down this scary road, it really does get better!
Nov 16, 2011 04:15PM roseamy wrote:
things are turning out well the recon looks great. looking forward to new nipple and then onto tattooing.
It is great to hear how others in the same boat are doing, just had mammogram on other breast and the results look good so forward i go again.
Nov 16, 2011 04:23PM lexi4 wrote:
Six years in August for me. Diagnosed in August 2005 with stage IIIB, er, pr- and her2+++. Had 4 A/C, 4 Taxol and herceptin. Had a tougher time with the taxol than the a/c. Herceptin, for me, was a breeze compared. Oh ya, forgot about the pesky rads snuck in there as well. Because I had skin involvement a bolus was used every other radiation appt. My skin, although fair, did pretty well. I was prescribed silvadene ointment and it worked well.
Very happy that herceptin has been made available for us and truly believe that it's the main bullet in our arsenal against the her2+ bc.
Nov 22, 2011 07:59AM MissShapen wrote:
This is so hard at the beginning of the road! My heart goes out to anyone starting down this highway.
I am 5 years out! My chemo damaged my heart and I only received 3 months of Herceptin instead of the 1 year I was prescribed. I was heartbroken and sure this was surely the end for me. While I do have a damaged heart, I am cancer free, pretty healthy, working full time, enjoying my new grandson! Life is wonderful!
I was stage 3a and had 7 positive nodes. My doctor told me, "Someone has to be on the good side of the stats. Why not you?" Well, why not? :)
Hang in there! There is a light at the end of the tunnel.
Prayers and Happy Thanksgiving!
Nov 22, 2011 08:42AM kim40 wrote:
Another Stage 3 gal here that is Her2 positive.
As you can see from my stats below, I'm triple positive, huge tumor, lots and I mean lots of nodes - 14 positive, widespread vasular and lympathic invasion. I finished Herceptin July 2010 and I am NED and planning on staying that way. I had a mastectomy in January 2009, ovaries and tubes removed last week and reconstruction surgery coming up next week. It has been one hell of a ride, but I am here, and I am enjoying life.
For all of the "newbies" - it is a very, very scary time for you. But as MissShapen stated above, there is light at the end of the tunnel. You will get there.
(((Hugs))) to you all
Nov 22, 2011 02:46PM maryannecb wrote:
Over 6 years now for me. Big bad tumor..took all the treatments offered, headed back to work during rads. I have been well since ending treatment.
Had breast recon at year 3 mark...lat dorsi flap, implants and exchange, tattooed nipple. My recon went well and I am pleased.
My first child has graduated university and my last will graduate high school this year. I now think I can look forward to grandchildren some day. I walk 3-5x/ week, paddle a dragon boat in Spring and summer and do all the things I did before...I have my life so back. I have become more spiritual and no when enough is enough...if I get tired i rest. I plan for my future. And if the damn beast comes back...it will catch me by surprise..I REFUSE to sit around and wait.
I was pretty pessimistic at the onset ...but , here I am , going strong. I have survivor guilt for friends that have not done so well and actively raise money to continue to search for the best treatments, preventative measures and cures. I hope that my daughter NEVER has to endure this disease.
Be strong everyone!
Nov 23, 2011 10:05AM PlantLover wrote:Lexi - Wow - 6 years!! I am also extremely thankful for Dr. Slamon and Herceptin!
Miss S - I'm so sorry to hear the Herceptin caused some damage. It's lovely that you are 5 years out and enjoying your grandson and life!
Kim - Congrats my triple positive sister! I hope the reconstruction goes well!!!
Maryannecb - Another one with 6 years! Outstanding!! Yes, "fists up" is a very good mantra!
While it may be more appropriate for me to count my two year mark from the date of my 1st surgery, April 8th, 2010, I personally choose to mark it from the day I began treatment.
Two years ago today I started fighting a war! Two years ago today I was in the hospital getting a port installed in my chest that would be used to inject all sorts of nasty drugs in an effort to kill my enemy. Two years ago I went directly from the hospital to my oncologist's office and spent six hours, the first of many, loading ammunition into my body.
I had 6 rounds of TCH followed by a bi-lat mastectomy with TE, 38 rounds of radiation, 9 rounds of Navelbine, & an oophorecotmy.
The war hasn't been easy. I have battle wounds to remind me of my fight every day. I lost my implant on the breast cancer side due to radiation damage. It's a nasty reminder. As I told my sister once, it looks like a bomb went off on that side of my body - somehow fitting. I have some intense hip and lower back pain and it takes me a few extra steps before I can stand up straight in the mornings. The good news is my recent PET was clean and I can learn to work around the pain. I still have cording issues in my arm but I stretch it and massage it everyday.
For those just starting this journey I want you to know this ...
I am stronger than I've been in two years, both physically and emotionally.
I've been going to a wellness center weekly for the past few months to regain my strength. I couldn't do this back when I was going through treatment because I was working full time. It was seriously all I could do most days to just make it to work & then come home and pour myself into bed.
One of my passions is gardening. This Fall I've been able to plant over 150 bulbs, create several new beds, and plant lots of new plants. I also have the help of a wonderful partner! I helped a friend plant foundation plants last weekend. I worked hard from 9 in the morning until 2:30 in the afternoon planting 5, 10 gal. shrubs, 8, 3 gal. shrubs, and 28, 1 gal. plants.
I don't say all that to brag ... I say that so that those of you just starting this fight will know that the light at the end of the tunnel is not always a train.
Today, after fighting Stage III breast cancer for two years, I am currently cancer free!! Thanksgiving now has much more meaning for me than ever before. I am very thankful and grateful for each and every day!
Happy Thanksgiving everyone!
Nov 23, 2011 11:34AM NeedtobeSTRONG wrote:
Plant Lover: Congrats on your 2 years! Funny thing about the gardening! I Love planting in the spring. This year my husband , myself and my kids Planted a Ton of bulbs this fall (we never do). I wanted to do this because come spring time I will be done with the chemo and radiation and thought what a beautiful thing to see the blooms of spring as I move foward to my new self. Thought this would be a great way to see how things bloom and flourish ( just like I will through this journey of mine).
Yesterday was my 34th birthday and a friend of mine wished my a Re-Birthday! Which got me choked up of course.. But it really helped me get into a new frame of mind. Since yesterday I have looked at this as me being a new person on a new journey in my life. I have always succeeded at everything I put my mind to and This to shall pass.....never going to be forgotten but will pass and get better day by day.
Happy Thanksgiving to all of you Wonderful ladies!
Nov 23, 2011 06:28PM - edited Nov 23, 2011 06:32PM by PlantLover
Thank you NeedtobeStrong!
Happy Re-Birthday to you ... I like that!
I know you've probably heard this before, I call life now my "new normal". I don't believe things will ever be like they were before but I'm going to do all I can to make every day the best it can be, if you know what I mean.
You'll enjoy the bulbs this spring. We'll both have to post pictures!
Nov 23, 2011 06:56PM KeepingFaith69 wrote:
I had a local reccurence after 15 months (and whilst still getting herceptin). Surgery next Tuesday and plan to be made after histology results....... BUT I plan to be swinging from the chandelliers at my two year mark, and every mark after that.
Thank you ladies for your conversations, they give me hope!
Aug 19, 2012 10:26PM evergreen9 wrote:
I will be 2 years in 2 months, hope it's not bad luck to look ahead to an anniversary. I also am a gardening fiend, and derive the greatest peace and perspective while working in my garden. Have ordered my bulbs for this fall, and hope to see them bloom in the spring!
Aug 20, 2012 10:10AM TonLee wrote:
I hit two years from diagnosis next month.
How exactly does the counting work? Do we count from last tx? Do we count from diagnosis? I'm totally ignorant on that.
Aug 23, 2012 10:27AM - edited Aug 23, 2012 10:27AM by blondie45
I like MissShapen had heart damage from herceptin. I only received 6 months of the herceptin. I was diagnosed in May of 2009 with positive lymph nodes and HER2 triple positive. It has just been 3 years for me and since I had my DIEP reconstruction last year I really feel like I am starting to get over the negativity and anger that I have had for the last 3 years. Read all you can on this site and reach out when you need to. Hugs, Dawn
Aug 23, 2012 10:29AM blondie45 wrote:
TonLee - I think I have read it both ways, starting to count from date of diagnosis or starting to count from finish of treatments. I think I have read more for starting to count from date of diagnosis.
Aug 24, 2012 01:12AM Trisha-Anne wrote:
It's two years from dx for me next month too.
Feeling great, and moving on with the rest of my life!