Calling all TNs
Comments
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LIsa, - The fishing trip looks like a lot of fun!!
(Did you catch dinner 
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oh yay, and no I didn't catch any fish. :-( Everyone is asking but I kind of forgot that it's actually about trying to catch a fish. Lol. We were very close to a king salmon and worked hard on catching it but it didn't want to be caught. actually it's a catch and release program so couldn't have kept it anyway.
Met one of the leaders who was tnbc. 7 yrs out. So nice to hear and know that we can do this
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Countryfrenchrose, welcome! I know you will find tons of info and support here. To answer a couple of questions you asked, my hair started to grow at the end of my taxol, I did buzz off the first few wispies to get it all back on an even level and it helped it to look fuller faster. And my neuropathy finally improved some about a year and a half after finishing chemo. I have read that running....yes! running! helps improve neuropathy...good grief! Any runners out there to confirm this?
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Also I have scans tomorrow, routine yearly scans. Send a prayer up for me!
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Prayers for you Meadow!
Lisa, I Love your pictures and your fly fishing retreat! Fly fishing has been so good for me during treatment- my dear friend took me out a few times. Something about nature and the water...so healing!
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Meadow prayers for you!!! Xoxo
Lisa love the beautiful scenery you were surrounded by. What a blessing for you. Awesome!!!
About the hair. For me. I let it all fall out. I was just too tired after giving birth to go get it shaved. I finished last chemo in November and I saw my first sprouts end of December (they were white & you really had to look. Lol)
Here is my hair 7 months post chemo. Hope that helps.
Hugs
G
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Meadow prayers for you!!! Xoxo
Lisa love the beautiful scenery you were surrounded by. What a blessing for you. Awesome!!!
About the hair. For me. I let it all fall out. I was just too tired after giving birth to go get it shaved. I finished last chemo in November and I saw my first sprouts end of December (they were white & you really had to look. Lol).
Hugs
G
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littleblue, yes that's the whole concept. Me too with the nature and water. In fact CFR started in Montana. The leader came this weekend as it was a new location in my.Please look it up. You'd probably love it! Peg miskin from Hamilton mt. Contact her peg.miskin@castingforrecovery.org
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I know I've missed a bunch and I don't have time to read everything right now but I wanted to welcome the newbies, wish everyone luck with treatment and praying for everyone here! Love ya'll so much
Meadow, sending up prayers for you dear! Keep us posted!
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Meadow...you will be in my thoughts and I hope everything goes well with the scans.
Lisa...looks like you had a lot of fun. Like you, I am hoping that I can get to the 3 year mark too.
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Meadow, you will have clean scans, I can feel it.
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Meadow, - I am sure all will be fine!
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Meadow - thinking of you and sending lots of prayers!! xo
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Meadow. Sincere prayers for uneventful scans!
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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Deb-Thank you for the reassurance! I cannot imagine being pregnant when diagnosed, my husband and I were actually trying to conceive baby #2 for 6 months when I found my lump. I thank God everyday. Everything happens for a reason is something my mother has been telling me since I was little and she couldn't more right even as screwed up as a cancer diagnosis is at this age (or any age really)! We are unsure now about trying again assuming my ovaries do wake up. I found out that I am BRCA1 positive so I am going straight for the double mastectomy after chemo to mitigate the risk of recurrence. I do have to schedule and appointment with a gyno-oncologist to discuss fertility and prophylactic oophorectomy options.
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A lot of posts to catch up on so will do that later but Meadow I'll be with you tomorrow, right there in your pocket with lovely warm hugs. I feel sure everything will be ok so try not to worry. Love you heaps.
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sending lots of positivity your way Meadow. I look forward to hearing about your clear scans X
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Hi All
Just wanted to say hello. I hope everyone is doing well or as well as can be.
Today is my wife's one year out from cancer! So far so good. Its been a hell of a year, one second we were celebrating the pregnancy then complete shock at the breast cancer diagnosis. But we got through. Baby is doing well, he's all happy and healthy, bit too healthy(!!) he's a very vocal little man.
I had no idea this website existed a year ago. The only online chat forum I had ever used was the discuss the movements of the stock market. You are a wonderful group of ladies and men.
For those going through treatment right now stay strong, there is light at the end of tunnel.
Lots of prayers, hugs and love to you all.
Tom
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Tom
What a great day for your family. Please share our congratulations with your sweet wife. I'm so happy to hear your little guy is doing great too. 😊
Thank you for being on here to help us & encouraging us to keep pressing on.
God bless you & your precious family.
G
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Tom you gotta come around more! Need some male bonding in this forum! Congrats to your wife and your family!
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Tom I agree with the others. You have to come around more so Mike has a play mate.
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You all are the absolute best people ever...what a blessing to me. Thank you all for the positive thoughts and pocket jumping.
I did the scans, waiting for results, maybe tomorrow.
BCH and Al, what would we do without you both? You keep us in line! And you don't mind our "nothing is off limits" conversations. BCH, I am so happy for your family. What a wild year. So very thankful the lil' man is thriving, and your sweet Mrs.
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Hope you get results quickly, Meadow! I'll be praying and checking back often!
Breastcancerhusband, I agree! AL needs some company around here.
Hope everyone's having a peaceful and well week. xo
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Sending positive thoughts meadow!
So my surgery is finallllly scheduled for next Wednesday. Lumpectomy to remove more tissue as well as the biopsy clip that the first surgeon left in. Also going to remove a few more lymph nodes which scares the bejeezus out of me. My arm feels great now and I'm back at the gym regularly. I'm petrified that I'll now get lymphedema after they take more out. Not to mention the surgeon said he needs to put in a drain for the nodes, which will stay in for a week. I didn't have one the first time and I know many of you have had them in the past but it seriously grosses me out to no end. I'm not good with any of this blood/stitches/gory stuff. I get queasy just thinking about it now.
Call me crazy but I still am going to attempt the half marathon 10 days after surgery. I already told my surgeon that I plan on walking it and he laughed and said that if the drain is still in (it won't be, thank god. this was before we knew when the actual surgery date was) that I can just tuck the drain bag into my sports bra. Pretty sure he's just as crazy as I am. I have two awesome friends that have offered to walk the entire thing with me. It's a half marathon through the Disney theme parks so we're going to just go out and enjoy every second of it, take photos with characters on the course, etc.
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Meadow, I am anxious for your scans on your behalf, I know they will be good though. I am right behind you, looking forward to the day when I can say I've been NED for a year or two or five or ten. I will be a long term survivor against the odds (odds are for other people).
On Tuesday I had a mid-chemo MRI and yesterday my MO called me to tell me that he is happy with it, I am definitely having a response (to the first chemo regimen, carbo/taxol) and it looks at least 50% better than when we started 14 weeks ago.
Now, to address the other 50%, I will start FEC on Monday. I know a lot of TNs and IBCers in the states get AC but my doctor, in consultation with the famous Dr C, is going with FEC because it takes longer (my Dr was concerned that I wouldn't be OK with that and originally planned AC because it is shorter and there was a DEC 2014 study that showed that there is no difference in outcome between the two). There may be no difference but Dr C feels strongly that FEC is the better treatment for ME so that's what I am going with, even though it will take an additional 10 weeks over AC. So, another 18 weeks of chemo before we talk surgery. I can do this.
I have been feeling somewhat discouraged because of my low ANCs during carbo/taxol (we decided to not even do the last taxol, Dr said I've already had 11, 12 won't make that much of a difference) so I asked about Neulasta. He said that they don't usually use it with FEC since it is every three weeks and that usually gives the body time to regenerate but based on my counts so far he'd be happy to use it so that's the plan, I am quite relieved and looking forward to no more chemo delays (they stress me out more than anything because I feel like the beast is having a chance to get stronger, which may not even be true, but it's a fear I don't need).
Peace all, I am going to read a bit more here then take a few days of a "screen break" to get off the devices and back to some real life things like groceries and laundry (sarcastically fun stuff!) and hanging out with my family (actually fun stuff). -Julie
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An Oncologist at the local cancer center wrote this. I thought it was worth sharing with all of you amazing ladies.
SHE PLANTED HER FLAG
She cries like a lamb but will fight like a lioness the day she's told she has breast cancer. Part of what defines her physical beauty will be surgically "excised" because the enemy is growing in her. She tells her family she will be fine, but in her heart she is gripped with fear. The battle scar is soon carved across her chest even before she has a chance to really fight back. To face her enemy, she will endure months of "chemotherapy" that will make her sick and bald. To fight her giant, she will let "radiation" excoriate her body and scar her more than skin deep. Then whatever is left that makes her soft and feminine will be removed by "hormonal therapy". She now feels less than a woman and intimacy is more of an act than a desire. If she's lucky, her partner will be by her side no matter what. If she's unlucky, this is about when her "partner" will bail out on her. Suffering all that, but day in and day out, she will get up every morning, adorning her headdress as her helmet, and her prosthesis as her breastplate, she will plant her flag and raise her sword to face her enemy.
Her body is weak; her stomach churning;her joints are stiff and her muscles are sore, but she will make her stand because she wants to live. She wants to live because she would love to share her tears as her daughter walks down the church aisle in a wedding dress, or at least to hear her daughter give the valedictorian address at the high school graduation or at the very least, to see her on stage at the...fifth grade play.
She stages her fight during the day but it's at night that she is most vulnerable. It is in darkness and when alone that her enemy's greatest allies: fear, doubt, shame, depression and despair will likely forge their relentless attack. She is Joan of Arc to her friends and mother Teresa to her family during the day, but when the night falls, alone in her bed, she is a weeping mess.
Then as dawn comes, she will rise up and stand. She will plant her flag and unsheath her sword and stand her ground.
If the battle is won, she will rejoice with both laughter and tears...until the next doctor's visit that is. If the news is good, she will make up for lost time and fill her days by loving and caring for her family and friends. If the news is not good, she will dust off her wig, replant her flag, unsheath her sword to again face her ever growing giant. This is a story of a breast cancer warrior but it's a story that's repeated thousands of times each year across this nation.
October is breast cancer awareness month. It is also the month to commemorate those who valiantly fought this dreaded disease and cheer on those who are courageously fighting it now. This is the month we need to tell these breast cancer warriors that they are indeed our unsung heroes. They need to know that we hope we never have to fight this battle, but if we do, we want to have the same courage they have. They need to know that they looked beautiful the day they were diagnosed with breast cancer. But on the day they fought their last battle, standing with their flags planted by their sides and their swords unsheathed, and though they may have been bloodied, mutilated, and burned, they looked even more beautiful then. They planted their flags and wielded their swords but it is their hearts that won the battle. October is all about them, because they have fought and earned it! God bless them all this October and God bless them all every month thenceforth!~ Dr. Manh Dang, MD. Oncologist at Clearview Cancer Institute, Huntsville, AL
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I'm still waiting for my doctor to call me up and say "just kidding!", but since that hasn't happened...
I'm 36 and was diagnosed with TNBC on October 6th. I'm married and (damn you cancer!) have two little ones at home - 8 months and 4 years. I have little self-control, so naturally I read up on everything before my first appointment with the oncologist. When I learned it was TNBC, I was so mad because I was so hoping that I would be in one of those cancer types with a 95% 5 year rate. Hearing that TNBC has a propensity reoccur and in other areas of the body make me feel so hopeless.
I had my port put in yesterday and I start chemo next Tuesday. I enrolled myself in a clinical trial through Dana Farber, but I may get disqualified because my progesterone receptors may be over 1% (they are now saying 1-4%). Not sure what this means for my prognosis or likelihood of chemo working well. If anyone has info to share on this topic, I would be so grateful.
I actually discovered the lump myself. Thanks to God that my BC hurt! Based on the ultrasound of the nodes, they think that the nodes have not been impacted, but nothing is for sure until after surgery I'm hearing. All other scans were clear thank God! BRAC negative. They think the tumor is between 2.5 and 3 cm.
If I'm not on the trial (which I'm pretty sure will be the case), I'll start with AC, then have surgery (leaning towards mastectomy), then Taxol (I believe), then radiation.
Just praying that I have a good response to chemo!
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My earlier post seems to have gone to neverland. I'll try again.
ALH Thanks so much for forwarding such a beautiful message. That oncologist is super sensitive.
AG So sorry you have to deal with such a scary situation, especially with young children. My heart goes out to you. I'm more than 4 years NED after a Stage III TNBC diagnosis. Treatment is tough, but you will find your strength to plant your flag and wield your sword. Holding you in my heart.
Cocker, yes, most fires are out, or nearly. I'm guessing your NZ fire guys have returned home. I hope they were all safe while here.
Hello and best wishes to all who have a reason to be here. Jan
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hi all,
meadow- good vibes sent on the scans! I'm sure you will be fine!
I'm having a hard time and I'm hoping someone can help... I'm back to work and back to my life which has been amazing! No more wearing a hat or wig... Finally starting to feel normal... Still scared everyday and crying randomly when I see my little girl and think did I really get cancer at 30? It all seems like a blur now...
But my real question is did anyone have lumps after their mastectomy? I can feel a weird lump in my armpit but I'm not sure if it's a node or muscle... Or scar tissue? I had no positive nodes involved... I'm only 3 months out from chemo and 2 from surgery! Could it be back so soon on my armpit? Should I push for an ultrasound? I'm so scared...
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