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Stage IV Triple Negative

sparky33
Posts: 4
Joined: Oct 2010

I'm new here, and it's my mom that has Stage IV TN. She was originally diagnosed in October 08 with stage 2a TN, had a lumpectomy with sentinel node disection (all nodes were clear), went through 4 rounds of chemo (Cytoxin and Taxotere) and 33 rounds of radiation - after which she was good for almost a year and a half. This past June, she had a seizure, and come to find out, the cancer is back and had spread to her brain, lower spine at L4, soft tissue in the shoulder and lymph nodes in the chest. Talk about a shock! We knew that TN was more aggressive, but no one ever thinks that its going to come back, much less all over.

She's undergoing chemo now - Abraxene - and has had two treatments of Zometa for bone support. She had Avastin at first, but due to a surgery that she had to have, she's not able to take the Avastin any more. We're now at 8 chemos, with really no end in sight, however, the tumors are shrinking, which is fabulous news!

I definately need some success stories, or something that gives me hope that she can beat this. All you read on TN is the horror - I want to hear positive stories so I can share them with mom. You certainly don't hear of a lot about TN - no one I have encountered has ever heard of it.

My mom is 61 and I just turned 40. Neither one of us have been tested for the gene mutation - but of course I'm terrified that I'll be next. I've been able to read some of the posts here, and this sounds like a wonderful group of people who offer great support - I would be honored to partake of your knowledge and wisdom to help get me and my mom through this tough time.

Thanks so much!

MAJW
Posts: 2515
Joined: May 2009

I had triple negative.....clean nodes...had the same chemo "cocktail" and the same radiation treatments.....I am 18 months from initial diagnosis..cancer free, as far as I know..another mammo the end of this month and blood work next month....Yes, sadly, triple negative is an agressive form of BC but it's not a death sentence.

I am so very sorry to learn of your mother's recurrence....don't give up! There are many on this board with triple negative and I am sure they will will also jump in to give you some words of wisdom.....

I wish you and your mom Peace and good wishes

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I do not have TN, but just wanted to say that I am so sorry and you and your mom are in my thoughts and prayers.

Also, about gene testing--from what I was told--the individual fighting the cancer needs to be the one tested. My younger sister and I were both tested as we both had invasive ER+ cancer. We both tested negative. My older sister had DCIS and has not gotten tested.

I am happy your mom is respoding and pray that she beats this beast. There are many TN women out here doing well and I know you will hear from them!

survivorbc09
Posts: 4378
Joined: Jun 2009

I am not Stage 1V or triple negative, but, want to offer my prayers and support. Many on here have survived bc returning 2,3 and even more times. They are living healthy and happy lives. So, don't give up or be discouraged. Your Mom can too!

Hugs, Jan

webbwife50
Posts: 395
Joined: Jun 2010

I was dx'ed with TNBC IDC in May 09, my treatment included bilat. mast., 8 rounds chemo, I had tram-plap recon. last Dec. as of right now I am in remission, and crossing my fingurs, I stay in remission. It's a scary dx, but there are many survivors and no reason to lose hope. Hugs....alison

sparky33
Posts: 4
Joined: Oct 2010

Thank you all for your kind words and encouragement. I want to have hope, but mom is having a really hard time now with depression and it's starting to drag me down. I'm hoping to find some solace here - just to know we are not alone helps so much. Today is one of those days where I can't seem to stop the tears.

JustRenay's picture
JustRenay
Posts: 54
Joined: Oct 2010

I know everyone here is praying for you...hope you can find some peace in that knowledge. Renay

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I'm triple neg with inflammatory BC, stage III though. Yes, it is a scary dx and it is very easy to get depressed. Are you and your mom doing any support groups? Have you talked with someone about your own feelings? What about prescriptions for depression? There are many here who are successfully using prescriptions to help with the emotional/mental part of battling this beast.

It is easy to say and hard to do...but celebrate every little victory. Each treatment completed is a victory, it makes the beast weaker and weaker until your Mom can win the big battle at the end!!!

You and your mom are in my thoughts and prayers, and you have my cyber support!

Hugs to both of you,

Linda

Haljo95
Posts: 5
Joined: Dec 2010

sparky33

My wife has been diagnosed with stage IV TN. She was originally diagnosed in May of 2006 with ductal carsonoma in her left breast. She had a bilateral with reconstructive surgery. At the time her Onc didn't recomend chemo or radiation. Her cancer came back in Feb of this year in the super cavicular, medial steinym and bone just under the sternum. (Forgive my spelling) She has gone through 8 months of chemo and radiation. The tumors have shrank significantly and show no metabolic activity. She just started a new round of chemo last week as a precaution. She will have three more treatments then it will be about monitoring. Her pet scans have come back clear with no other involvement. My wife has been an RN for the past 12 years and specializes in women's health. She is very aware of her condition. She is my hero because of how well she approaches each and every day even when she feels miserable through her treatments. She spends no time on the internet doing research. She leaves that totally up to me and I have learned a lot both good and bad about her desease. I guess because she works in the medical field she understands it's about her quality of life that counts. She doesn't want to sit around worrying about things she can't control. She would rather live each day recognizing the beauty around her. I do the best I can to let that happen and remove as many barriers as I can. It's very difficult to watch a loved one go through all of this but it really is up to us as care givers to be there for encouragement and support regardless of the prognosis. Prayer, love and hope is pretty good medicine for the one's with cancer and the ones giving the care. Hang in there and give your mom lots of hugs and encouragement.

linpsu's picture
linpsu
Posts: 736
Joined: Mar 2010

I was originally DX with DCIS Triple Neg on 2/08. Had lumpectomy, then mastectomy due to non-clear margins. No chemo or radiation at that time, but reconstruction. Then DX with IDC on 2/10; what we thought was scar tissue under mastectomy scar was actually a reoccurence of cancer. Had neo-adjuvent chemo - 8 rounds (A/C - 4; Taxol - 4; dose-dense every 2 weeks); then another mastectomy to remove implant and more tissue and 14 nodes, 1 positive; 28 radiations. I was Stage 3C and am terrified that I will progress to Stage 4.
Linda

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009

Linda, please do not let my or anyone else's situation make you more fearful. Every one of us is a unique individual, and some of us have to be in the survivor category! Claudia, a couple of years ago, wrote a beautiful and powerful message on how we can all live well and with joy, despite cancer. I will try to find it for you. Please give me awhile, but I will find it. Her message helped me to let go and live fully.

Thank you for sharing your fears, though. The responses you received have helped me, too. Thanks to all.

Sometimes, at youngsurvival.org, there are threads of TN survivors. You might look there: you will see a roll call of women of all stages who are flourishing. Breastcancer.org also has a TN thread. Celebrate being cancer-free, and try not to fear what may happen. Take joy in your loved ones, in your favorite things, in just being alive. It's hard, I know. But we can try. For the sake of the people who love and care for us.

My best to you.

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

I am so sorry that your Mom is going through all this. The tumors shrinking is good news indeed, and I will pray that she continues to receive good news. I have never heard of TN breast cancer. If you are terribly worried maybe you should look in to having the BRCA test. I will be praying. Eil

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

I am so sorry that your Mom is going through all this. The tumors shrinking is good news indeed, and I will pray that she continues to receive good news. I have never heard of TN breast cancer. If you are terribly worried maybe you should look in to having the BRCA test. I will be praying. Eil

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