Calling all TNs
Comments
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Hello Linda,
Thank you so much for replying. I do wish you and Teka all the very best. I think it is important for all of us survivors to pop in from time to time to help all the new patients appearing on these threads. It shows there is life after cancer treatment.
Like you, I also wonder what is going on with Annie.
Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Thank you for sharing the encouraging messages, ladies!
Lyn
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Lovely to see the posts from those of you who are doing so well, years out. Hope everybody else is coming along too!
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I am coming up to 8 years out and doing great. For all newbies remember -breath, hope and hang in there!
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I'm so scared. Have been experiencing a stiff and painful neck and did an MRI this sunday. I know this side of my neck have been an issue before, but I can't really shake the fear. And its not better when I read around the stage IV threads and only see ER+ and HER+ that seem to be alive and kicking with spread. There aren't many triple negative around there...
I'm supposed to be cured now and live a normal happy life and instead I'm using google to determine if I'm going to die or not. I' know how stupid this is, but I can't stop myself. It's ok when I'm at work, but on my spare time...
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SwedishGirl - I'm sending you as many gentle, calming, supportive vibes as I can. When are you supposed to get the results of the MRI? This waiting part is soooo awful. We are all with you and hope that the results are good ones.
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Swedish Girl, I imagine that I will be sweating issues when i put treatment & surgery behind me☹️. I hope you get good news from the MRI. Please keep us posted!
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JJ62 - congrats and thank you for sharing!
Swedish Girl - remember when a stiff neck was just that? Now every pain is a cause of panic. I’m glad you had the MRI and most likely it is just the issue you’ve had before. Please keep us updated and know we’re thinking of you. Also remember there are a lot fewer of us TN girls(lucky us). Also, the truth is people who are doing wel tend to not be here.
Hugs
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Swedish girl,
There are lots of great triple negative survivor stories. I have a lot of views on triple negative I'll share privately but one fact to keep in mind is 10-20% of cancers are TNBC so by their smaller sample set, there should be fewer stories
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My dog has a possible sarcoma on her leg. But it could be benign, they can’t tell. So we are going to side with caution and have the lump removed. Stupid cancer. She will be 12 on Friday.
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LovemyVizsla - I hope everything works out with your pup. They are so giving, especially when we need them most
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LoveMyVizsla - I hope your red beauty recovers quickly!
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Hi every one! popping on to make sure you all saw the news about dr tuoy at the cleveland clinic that finally got the all clear for clinical trials for the triple negative breast cancer vaccine...10 years down the road...but it's a start....maybe help our daughters anyway! finally!!! google it! it's good news.
sorry for all the !!!! but I'm dang excited!!!
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Titan-
The question is then, how can we get in on the clinical trial?
Rebekah
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https://www.facebook.com/TNBCFoundation/posts/1798102153554396
Northwestern Medicine scientists have discovered a new function for a protein called SET1B in the cytoplasm of cells, and demonstrated that targeting its role in regulating cellular metabolism may be able to treat triple-negative breast cancer.
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I was 64 when I was diagnosed with TNBC on 3/4/16. We had flown in from Denver to Tampa, I found it right after we landed. I commented to my husband on our drive home that I had pain in my right breast. In fact, it was sort of hot & it hurt! I was concerned but not alarmed. I had a fibrosis tumor removed from my left breast when I was 23, thought maybe that could be the problem. My PCP immediately got me in for a biopsy. Two days later, the dreaded call came. I got 3 different opinions (Florida Cancer Specialists, The Mayo Clinic in Jacksonville & UCH-Denver). I had a lumpectomy on 4/1/16. In May, I started A/C followed by 12 weekly rounds of Taxol. My treatment was completed after 30 rounds of radiation 1/3/17. I did get gene tested & had to pay for it myself since BC did not run in my family. They ran the full cancer gene panel since I was a self-pay. Negative for all the genes they can test for cancer.
I see my oncologist every 4 months and I will continue that regimen over the next couple years. I am extremely encouraged about the research into TNBC that is looking very promising. Lots of new things on the horizon (the Mayo Clinic is in a Phase II clinical trial for a vaccine that may cure). I pray that I am one of the last people to have to endure chemo & radiation in this day of state-of-the-art technology!
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I'm pleased to read your comments about possible TNBC treatments and, dare I use the word "cure."
My wife's an estrogen BC convert to TNBC.
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Hi, Lynnard51. I'm right there with you praying for advancements in treating TNBC.
I wanted to share good news I got today at my surgeon and oncologist visits. My original tumor was about 8 cm x 6 cm x 3 cm. After 4 rounds of AC it has shrunk down to 2 cm x 1 cm x 1.5 cm. They are both really happy how my cancer responded to AC. I just has my first of 4 DD Taxols today, Please keep a good thought for me that it shrinks even more.
Hope everyone has a great weekend!
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Fantastic news AgathaNYC! I'm so happy for you.
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Mike 3121 there is a FB page called Triple Negative Foundation. I receive the latest updates from that site. I am very encouraged with all the new treatments on the horizon. I also google, at least once a week, latest treatments in TNBC. They are getting close, very close!
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Hello! Today is my 4 years and 4 months cancerversary from TNBC. I just wanted to post to give hope to those who didn't get a pCR. I was originally stage 2b and didn't get a pCR after neoadjuvant chemo. The original tumor in my breast was completely killed off, but there was still residual in two nodes. So far, there has been no recurrence. This site was a huge support for me going through treatment and I hope it is for everyone here. Wishing the best to everyone going through treatment now. It's a rough road, but there is a light at the end of the tunnel.
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Hello! Today is my 4 years and 4 months cancerversary from TNBC. I just wanted to post to give hope to those who didn't get a pCR. I was originally stage 2b and didn't get a pCR after neoadjuvant chemo. The original tumor in my breast was completely killed off, but there was still residual in two nodes. So far, there has been no recurrence. This site was a huge support for me going through treatment and I hope it is for everyone here. Wishing the best to everyone going through treatment now. It's a rough road, but there is a light at the end of the tunnel.
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Wahoo, Agatha!
What encouraging news, simplelife4real!
My Foundation test disclosed several alterations associated with resistance to chemotherapy / radiation treatments and or secondary tumors. As I deal with the side effects of chemotherapy, I sometimes regret pursuing that option, but am very grateful that this week's mammogram showed nothing suspicious and last month's tumor marker test showed no adverse change.
Lyn
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YEAH, AgathaNYC!!!
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So exciting, Simple Life! I did not get a pCR, either. Amazing, really, because I had 4 chemotherapy drugs. But, I have to believe the cancer will not come back. Johns Hopkins believes my risk has already fallen....they say, "12-18 months after chemo completion is the most likely time it will return." I am 13 days shy of 2 years of completion of chemo. Also, I keep seeing 77% of all TNBC patients survive past the 5 year mark. I believe that number is probably higher these days and going to get even higher soon!
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simplelife4real...So happy to read your post. Can’t wait until you reach the 5 year mark!
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Batesburg...Thanks for posting the Hopkins info. First time I’ve heard those stats. Today, which is my birthday, I just hit the 18 month mark since I completed chemo.
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Happy Birthday, Cathytoo!!! Celebrate!
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Hello Titan,
I was so pleased to see you back on the thread you started. I am pleased to know all is well with you.
Fond thoughts.
Sylvia xxxx
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Agatha, SuprSurvivr, and VLH.
I ended up staying in the CCU from Fri-Mon. My heart would not go back into rhythm by itself so they ended up shocking it back into rhythm Mon morning. It's been a couple weeks and so far so good. They did give me meds to keep it on track just in case it decided to go out again. Cardiologist said it was from the stress on my body from the chemo Oncologist said he didn't think it was the Taxol that done it so who knows. Had a few EKGs and 2 Echos done while there and everything looked great...no damage of any kind. Sorry it took me a while to respond. Hope you all have a great weekend.
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