Calling all TNs
Comments
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HockeyChick, best wishes for a smooth run of treatment. Definitely post any questions and let us know how you’re doing.
Rebekah, too bad about that study. It sounds promising but apparently not for us. I don’t really get why they are referring to low HER2 as TNBC.
Over the weekend, i felt a (new) bump under my arm pit. Called in and had an u/s today. It’s just a cyst. Phew. Feeling very thankful tonight.
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HockeyChick, I was on Neulasta & still ended up hospitalized with febrile neutropenia. Just as a back up plan, I'd consider lining up potential cleaning staff for your home and figure out grocery or meal delivery etc. You might not need it but if you do, it's nice if you have it all researched already.
AC made me super tired. I could reheat food but cooking was beyond me. Taxol has been way easier (I pretty much feel almost normal in terms of energy levels) & many people report the same experience. So just in case, if AC feels harsh for you, just know that odds are it's not going to be like that the whole time.
Do join the monthly chemo thread for your start time. It really helps to hash it out with people going through the same thing.
I totally agree with Valstim about sticking to happy threads. I actually blocked certain forums so I never ever seen them. Stay in happy places!
Flynn, yah for b9 cysts!0 -
Hello everyone,
I am just pooping in to say that it is exactly 13 years today since I was diagnosed with breast cancer. I still remember that day vividly.
To those going through treatment, I hope this will give you encouragement that you can do it.
Best wishes to all.
Sylvia
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New article on a computer program that might be able to predict which TNBC patients need which cocktail of drugs.
https://www.sciencedaily.com/releases/2018/06/180619141342.htm
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"We hope to have this new combination in clinical trials in two to five years," Dr Nguyen said." Ahhhh, nooo way I say!
Also, I have to disagree with this comment: "the survival rate remains only 12 months."
MikeW.
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Waving hello to you Sylvia and congratulations on such a big milestone.
Sending good thoughts to everyone. Special hugs to those in treatment.
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Sylvia - thank you for dropping by with words of encouragement and congratulations on your milestone!
I am at the point where I don't want to tell people I am TN (outside of this forum). The way people react, it's starting to stress me out. They pretty much have me written off in 3 years.
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Hi, LoveMyVizsla,
Sorry, I've spent minimal time on the forum the past couple of werks & missed your inquiry. My oncologist referred me to a Physical / Occupational Therapy clinic that has an ongoing relationship with the Flexi-Touch company.
I thought I would have to go to a local store that has wigs, compression sleeves, gloves, etc., so was pleased to learn that a Flexitouch representative could take my measurements right at the PT / OT clinic. Once the pump arrived, an employee came to my house to help fit the garments and show me how to use the machine. The financial impact of cancer has been devastating, but I feel lucky that I was able to retain good health insurance coverage through my former employer. They quickly approved the pump pre-authorization request.
Lyn
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I was originally diagnosed E+ P- in March and was whisked into surgery for a right sided mastectomy 2 weeks later. I had only met with the surgeon at that point. Surgery went as well as I could have hoped. No lymph node or vascular involvement as well as clear margins. After that I wound up changing treatments cwnters as there was one much closer to my house where I could get my Chemotherapy. When I first met with my oncologist she's informed me that where I was only 1% E+ my diagnosis was actually TN. She also stated i should have done chemotherapy first butsince I already had my surgery we would move forward from there. I partially blame myself for not taking a minute to breath or look into anything. She sounded encouraged by my surgery results but seriously how could that have been missed? I've had 3/4 of my AC tx and will do 4 taxol. Most days I Am positive but it still botherS Me that my onc doesnt feel i need a body scan due to my surgery results. Should I be OK with this? I got my pcp to do a chest ct scan. ANd that was clear. It's been a whirlwind of emotions!! Thanks for reading....
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I was originally diagnosed E+ P- in March and was whisked into surgery for a right sided mastectomy 2 weeks later. I had only met with the surgeon at that point. Surgery went as well as I could have hoped. No lymph node or vascular involvement as well as clear margins. After that I woundup changing treatments cwnters as there was one much closer to my house where I could get my Chemotherapy. When I first met with my oncologist she's informed me that where I was only 1% E+ my diagnosis was actually TN. She also stated i should have done chemotherapy first butsince I already had my surgery we would move forward from there. I partially blame myself for not taking a minute to breath or look into anything. She sounded encouraged by my surgery results but seriously how could that have been missed? I've had 3/4 of my AC tx and will do 4 taxol. Most days I Am positive but it still botherS Me that my onc doesnt feel i need a body scan due to my surgery results. Should I be OK with this? I got my pcp to do a chest ct scan. ANd that was clear. It's been a whirlwind of emotions!! Thanks for reading....
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cccmc2 - fwiw, I had surgery first as well, and I also didn't have any scans. Scans aren't done here unless there are clear clinical signs to suspect spread.
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I had surgery first too, but only because of my immune system. MOmwasnt sure she could get me through chemo. I did have a CT scan first though.
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cccmc2 - my BS also failed to tell me that the “aggressive “ tumor he found hiding behind my “better” tumor during surgery was TN . I guess he didn’t want to be the bearer of bad news.
I am at a highly ranked cancer center and they still do surgery first for small TN tumors, so my treatment would have been the same regardless. Also no scans for early stage cancers like mine. The truth is that even with TN, our prognosis is very good. Obviously, some people fall on the bad side of the stats, but these are the rules by which the medical profession adheres.
It is a very tough breast cancer to cope with, especially when you google, which we all do! However, you seem to be getting the most aggressive treatment. Remember, so many women on here have received chemo after surgery and are living long happy lives.
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thank you for your replies. They really help!
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Hi all,
Just found this site. I'm now 68 and was diagnosed with TNBC a little over a year ago. I was T1b 0 node. Although my tumor was small and my chances were good, I was still encouraged to have 4 rounds of TC chemo and standard 15 rounds of radiation. After researching TNBC I found out that in one study years ago, T1 patients that did NOT have chemo did worse than T2 patients that did have chemo. No brainer for me! Chemo started June 13 2017 . For those who may be afraid of it, I have to say that it was not fun but not nearly as bad as my imagination. I continued to work through treatment and always kept active. I like to power walk every morning. Well, the first week after a treatment, I wouldn't call it a "power" walk, but I did keep my feet moving. Thing is, i felt SO much better by forcing myself out and about. Drink tons of water - really a lot. Flavor out that "chemo mouth" with lemon juice but keep drinking fluids. Don't worry about your hair too much. I bought a wig but wore it only once. I bought lot's of cute hats and big dangling earrings. That worked for me.
I'm now a year out . My hair is back, my energy level is back, I'm feeling great. I'm not 100% worry free 'cause I'm a worrier - just my nature. But, I threw everything they would let me throw at this thing and I have nothing to regret. I gave myself a very good chance of being around to meet any grand-kids I might have. Now, if only my daughter and her husband would just get to it!
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Hello NavyMom
Many thanks for your kind words. I do hope all is well with you and yours.
Fond thoughts.
Sylvia xxxx
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Hi icecolady - nice to meet you & hear how well you're doing!
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cccm2, bc really messes with your head. It sounds like you are getting appropriate chemo. I did get a scan in the beginning but certainly many patients don’t and are fine. Try to keep positive and not think too much about things you can’t change! All you can do now is focus on the here and now. Easier said than done perhaps but it’s a good goal.
Congrats Silvia!!
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Icecolady, welcome! I’m so happy that your journey is going well!
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I asked the Johns Hopkins "ask an expert" about TNBC recurrence and this part of the answer that was posted:
One study found that 78.7% of TNBC patients were disease-free at 5 years. It stated that the median time to any recurrence was 1.7 years, with even 75% of all events within 3 years after diagnosis.
Thoughts?
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Dear Sylvia
What an inspiration. Congrats.
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Batesburg, I think that sounds about right. 3 years is the highest risk and it drops dramatically after that. 5 years is back to normal population. I saw a chart somewhere once but haven't been able to refind it.
Sylvia, you are an inspiration. Thank you for giving us all hope.
Rebekah
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Another clnical trial for early stage TNBC, this one at UCSF in San Francisco. It is a Phase III trial for this drug: Adagloxad simolenin + OBI-821, but I have not heard anything about it. It requires 100 injections so I don't think it would be feasible for anyone who doesn't live in the Bay Area.
Rebekah
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Batesburg - I believe that that stat is for stages 1-3, correct? It was a huge study.
I asked her my own question months ago - stage 1b, lumpectomy, chemo and rads and my onc said I had an 80+ % chance of no recurrence- do you concur? She replied “yes”. I guess we just have to accept that obsessing and worrying about it won’t change a darn thing. Easier said than done, but I just really try not to let to affect my day to day. I’m doing a much better job. Some mornings cancer isn’t my first thought. This , my friends, is progress! But, of course, some days and I i can think of nausea I thing else !
Sylvia - I love reading your posts
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Batesburg
I interpret that to mean that, out of the 78.7% that were disease-free at 5 years, there were women that had a recurrence within 3 years after diagnosis that were treated successfully.
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Hockey Chick, I read it as 78% had no recurrence. Of the 22%that did, it happened in the first three years after treatment or date of diagnosis, however you want to start the clock.
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I agree with LoveMyVizsla - of the ones that did recur, 75% recurred within 3 yrs of initial dx.
Just want to add this: knowing that there's an approx 20-25% risk of recurrence, what can we do to make that risk smaller?
One general study showed exercise reduced recurrence risk by 40% (the CMAJ study) but it doesn't split out the various types of breast cancers so I looked for studes specific to tnbc & presto : "Women with higher exercise-metabolic equivalent(MET) scores (≥7.6 MET-hours/wk) and longer duration of exercise (≥2.5 h/wk) had lower risk of total and recurrence/disease-specific mortality than did non-exercisers. " This study also identifies tea consumption as a protective factor for tnbc.
So friends, let's run, swim, bike, climb, dance, get super sweaty & then have a cup of tea https://www.ncbi.nlm.nih.gov/pmc/articles/PMC45869...
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Hello, I am 66 years old. I was diagnosed stage 2 b breastk cancer in July 2018. Treated witjh a touch TCHP regimen starting Sept 2017. Becamse toxic so only got five doses. Had lumpectomy February 6 and was NED and Complete Pathologic response at that time. I had 30 radiation to breast. March 12- April 25. On Herceptin every three weeks.
While doing a breast Self Exam, i felt what seemed to be a rather large lamp, almost right where the cancer was. I have notified NYOH (New YOrk Oncology Hematolgy and will call them toomorrow to have a look. It is HER 2 positive and i guess quite aggressive. Truly the breast cancer is unlikely to return with all these mechanicists in play, Surgery, NED Chemo, Radiations, Herceptin? I am a patient of New York Oncology Hematology. A sister has breast cancer and an older sister is 3 b Colon Cancer DX one month ago.
Id so greatly appreciate your thoutghts suggestions and feedback.
Michela RIccio
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Hello.
In addition to my earlier post about recurrence, a friend of mine is good at math (smile) and with the stats shared, he figured out that once we reach 3 years, according to that study and stats shared, our risk of recurrence drops to 5.9%!
5.9% vs. 21%.....no wonder the three year mark is meaningful and quite a gift before the five year mark when we TNBC people can totally relax and become like any other person......back to the "normal" risk pool population....or so I have heard.
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Moth and LoveMyVizsla - that makes much more sense.
Off to the hospital for my first dose of DDAC this morning,
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