Calling all TNs
Comments
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DMP - Welccome.
First, yes TC is one of the standard protocols for TNBC. In fact, I am on it right now. There are several different "standard" protocols - and they have to do with the size of your tumor, whether lymph node were involved, etc. Doctors are guided by these standards for Stage I and II breast cancer: http://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#33
I also had a <1 cm size tumor and no nodes involved. 4 rounds of TC seems to be the way many doc choose to go in that situation.
2nd, the side effects aren't too bad, but you will lose your hair. Day 14 seems to be the start of the big time fall out with most losing all of it by the 2nd infusion. Some try Cold Caps with some success. Because my doc worries about long term testing with TNBC, Mets, and Cold Caps, he advised against it, but left the decision up to me. I decided it was just hair, and I went for a crew cut on day 12. This is Day 20 for me and I am pretty much Kojak now. (You get used to it, and it makes for speedy showers).
3rd - hands (and sometimes feet). Yep, neuropathy is a potential. As is nail lifting. I had no problems with either of these so far, but I do have a mild case of "hand and foot syndrome" but only on the back of my hands (which is weird, but happens sometimes). It creates an itchy eczema like response that stops right at the wrists. I will be using the icing mitts on round 2 to try to prevent this from happening again as it was the most annoying side effect of them all.
4th - and most important. You can do this. Read through the Feb 2016 chemo starters. You'll see the fear and then the "we got this". So much of it is the build up, rather than the reality.
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Sylvia and jlsStacy, how much do you take of glutamine? the 1000 mg tablets?
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Hello Valstim52,
I think you have misunderstood my post. I was just saying that I had read a post where someone was saying they were taking glutamine for neuropathy, as well as doing the icing and it seemed to work.
I do have peripheral neuropathy, caused by Taxotere in 2006, but I have not taken anything for it, as my oncologist, two podiatrists and my GP, told me there is no cure for it. I may try glutamine when I have researched it a bit.
If I were you I would ask your oncologist's advice about how to prevent peripheral neuropathy when on Taxol. I actually had Taxotere, but both drugs are taxanes.
Wishing you all the very best as you go through treatment. You can do this.
Fond thoughts.
Sylvia xxxx
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Thanks Chambo! This information is very helpful and reassuring. I think you're probably right - the buildup in my mind is probably worse than what I will experience. So much fear! It's reassuring to know that TC is somewhat of a standard for TNBC - neg node. Thank you for taking the time to explain all this to me. I will definitely go on the chemo starters forum. I hope that the rest of your time on chemo is easy on you and that you enjoy a full recovery! Many hugs....
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It's official, my boss approved me working from a remote location! We are putting the house on the market this Friday. We have decided to move the family from Charlotte, NC to Charleston, SC. I have this feeling it's now or never and honestly it's the first time in 3 years I've been excited. Can anyone give me recommendations for an Oncologist in Charleston? My negatvity and paranoia are creaping in that C will reuin this plan but am trying to push them out of my mind and be positive and have faith.
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Hi Jen,
I will ask my friend there who they recommend and get back to you. I lived there for 3 years. Love!!!! Good for you.
Xoxo
G
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Dmp, if I have not said hello and welcome yet, I am sorry and am doing so now!
Jen, whoop! Yes! So excited for you and the hubby! I love it that you are doing this!
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jenjen go for it. It's meant to be or it wouldn't happen. Enjoy the excitement of a new place, a new beginning. Cancer won't follow you I'm sure.
Hi to all of our ladies today and I hope all is going well, whether in treatment or out of it.
Where's Mike lately??.
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Val- I followed the instructions on the bottle. It was a powder and I mixed it with lemonade. I had it three times a day. this is what I used:
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He is Absent Without Leave....did we give him the ok to be absent...no...
COCKER, I was just thinking a bit ago that I wish we could watch The Voice together. ...my Spouse and I enjoy that show and it has been good so far this new season. Do you have this show? Have you ever watched?
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Hi everyone,
I just met with my medical oncologist and she told me that Alpha-lipoid-acid (ALA) reduce the symptoms of peripheral neuropathy he. Has anyone tried ALA?
I like the idea of m&m ice cream sandwiches!
Nalagirl
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M&M Ice cream sandwiches sound yummy... Mint chocolate chip ice cream got me thru chemo and rads... yummy!
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Here's what my MO handed out. I did not take nearly that much but only had neuropathy in the tip of my right pinkie. Maybe I wouldn't even have had that if I'd taken the full amount.0 -
BRCA mutation better outcomes for TNBC? I just finished readinga study that indicates that women who test positive for BRCA 1 or 2 will have a much better survival rate than women who test negative. Has anyone heard this before? I tested negative which I thought was good. Now I'm worrying again about a poor prognosis. Don't want to go there. Trying to keep a positive outlook.
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Oy vay, it's always so doom and gloom for us TNBC gals!
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Well, Cathytoo, doesn't that just suck
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Cathy, I tested negative for brca, too. I will ask my onc when I see her next month.
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Curly mint choco chip is my fav too!
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I'm BRCA negative too! Isn't that just F-ing perfect?!! Jeez, cancer sucks!!!!
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I am also BRCA NEGATIVE, and have read too many articles. I am trying Really hard to stop reading. The study I think you may be talking about was in 2010, and cited better survival for TNBC, BRCA +. It consisted of only 77 women.
A 2013 study of 3000 had a different conclusion. I think I will stick with this study. I am working really hard to stay off the internet, and be positive. I think of all of us every day, read BCO every day, and try to LIVE everyday.
Hugs to all of you!
Arlene
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I am also BRCA negative. That study that showed a slightly less favorable outcome for BRCA negative was too small to really be able to make a general conclusion. There are so many other things that could have been factors, they can't know from that small a cohort what a real population-wide statistic would be. I am not going to fret about that. What IS positive about being BCRA negative is the not passing that particular mutation on to your children part. Also, remember, you are not a statistic. In 10 years you will not be 80.9% alive, you'll either be alive or you won't.
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Jen - Yes! Now or never and I think you're making the right choice!!! You got this and I think it will be so good for you and all will be well! Sending you good thoughts and prayers that your house sells quickly and it's a smooth transition for you!
Meadow - we love The Voice too! Team Blake!!
Jan - so sorry you're dealing with so much at once right now. Hope you start to feel better soon!
Cocker - hugs to you. I also have our cats' ashes and it was an extremely hard moment bringing them home.
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I'm here Cocker. Just doing more stalking than talking lately. We are getting ready to head to Florida on vacation for 10 days. Can't wait. I have an Aunt down there who is 92 (and a 10 year BC survivor!) so I'm anxious to visit her while we're there. We also intend to hit Disney World since Kath has never been there. We're staying in a condo right on the beach so it should be nice.
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This is my first post on any of these forums...
Diagnosed in January 2016 with right IDC, Stage IIA, 2.9cm,triple negative. I'm 25 years old and BRCA1+ it was found out just a couple weeks ago. I started neoadjuvant chemotherapy three weeks ago.
I'm on a trial that has me doing weekly Taxol for 12 weeks with Carboplatin (or placebo) every three weeks and daily Veliparib (or placebo) twice daily by pill. This will be followed by 4 treatments of AC administered every 2 weeks. A double mastectomy will follow with tissue expanders that will be exchanged for implants 3-4 months after.
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Im with Mamiya 100%. You'll drive yourself nuts with statistics.
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TampaWhit, welcome! But actually I would rather that you never had to join...I am so sorry for your diagnosis. And you are so young too, just not right. But, I know you will find tons of support and information here. Have you had time to explore the website? There will be a group and thread of people starting chemo the same month, did you start in March? I recommend finding and joining the chemo group for the month you started...there is a lot of comfort going thru that at the same time with others. I am assuming you are from Tampa, Florida? What a beautiful part of the USA! Kinda jealous of those who can see the ocean without an 11 hour roadtrip! Please let us know how we can help you get through this...and you will get through it. You can regain your good health, you have to fight but you can do it! Hugs to you
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TampaWhit - ditto what Meadow said.
Feel free to ask questions here, rant, cry, do whatever you need to do. We have all been there! Welcome to the club you never wished to join.0 -
TampaWhit, you are insanely young to be going through this. That just SUCKS! Your trial sounds great -- so glad you're in it. Don't believe any of the doom and gloom you hear about TNBC. There are lots of women on this thread who were diagnosed TNBC 5, 10 years ago, and they're still going strong. Stick with us, kid -- we're here for you.
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cathytoo ..
brca positive seems to have better outcomes because they have more customised treatments targetting that particular condition of the genetic profile. while the non brca patients get the usual treatment like everyone else.
cocker..
i have been around but havenot had the chance to type much. Thanks for thinking about me!!
I had my follow up a few days ago. Asked about metformin once again since we recently had another set of discussion happening here on that. My onco again clarified...for a person who is non diabetic and generally taking metformin..the risk is more that benefit. The fact that it certainly prevents recurrence is not yet established. Infact unnecessarily taking this medication has a chance of kidney failure in the future.
spring is setting in..enjoying my outdoor walks. The sun and the birds chirping around have always been my biggest attraction. winter was mild this year and as the snow melted we found the grass still green underneath!!
happy to hear from sylvie and titan both completeled 10 and a half and 7 yrs respectively!
good health and happiness everyone!!
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In the chair about to get my first AC infusion. Bring on the Red Devil! I tolerated Taxol/Carboplatin fine but am a wee nervous about this one.
BanR-I just asked my MO about Metformin and she said essentially the same thing as yours. I will not be getting that from her it seems.
TampaWhit-I'm so sorry about your diagnosis... And sheesh so young! You will find comfort and good information here. Welcome.
Hugs and high fives to you all. I hope you are all able to do something fun this weekend.
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