African American Women & Triple Negative Status
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Hi journey nobody on this thread too much. I check everyday , Where my People At????0 -
Always brings a smile to my face when I see a post on this thread.
Praying for you all.
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Hi everybody. Nice to catch up. Wondering how many of you will be getting or looking into the blood test for circulating tumor cell DNA (CTC) to monitor for metastatic disease?
My insurance doesn't pay for it- but the more I think I about it, the more I think I am going to get it-even at self pay.
Just had my (almost) 4 year check up with my Oncologist yesterday. All is well, just a little (glory to be to GOD. it was really bad at first) cardiomyopathy after the Adriamycin of my TAC. Didn't happen until this past December-3 years out from chemo!
Prayers going up. Please lift your special prayer requests up in the air tonight and this week as I head on out to church to present our now Annual BC Awareness presentation-info, prizes, prayer and fun. Trying to make sure that anybody else in our church body who may get BC, gets diagnosed at Stage 0 and covering all survivors-in and post-treatment while remembering those who have gone on and those they have left behind. Big ups to Stephanie/Triple Negative and blessings upon her family.
God bless us all! Don't forget to let me know if you'll be getting that blood test looking for mets.0 -
Hi Indomitable1:
Hope all is well with you and glad to see you still on this site. Where do you find these tests and particularly the one you mentioned of the DNA (CTC)?
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Hi all. Have been off for a couple of weeks. Indomitable1 - will look up that CTC as I also have not heard about it. Prayers going up for all our sisters. Blessings.0 -
Hi ladies-
Found this link re: the blood test for metastatic disease.
http://www.cynvenio.com/patients.php
It's called ClearID and checks for circulating tumor cells.
God bless!0 -
Thanks. Will check it out.
Praying all of you are doing okay.
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is their anyone out there0 -
Yep a few of us check in now and then.
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Here and checking in. All is well. Take care ladies!
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Checking in also, still here. Happy New Year to All!!!
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Hi
everyone.First
all of let me say that you all are so so so brave. I've watched my mother
battle this thing for months and I'm so amazed by her strength and the strength
of all of you. Stronger than any man I've ever known.My mom
was diagnosed with triple negative breast cancer in May. She started chemo
treatment in June. They had her on cytoxan and another chemo drug that starts
with an "A"...andro...something...Anyway,she
had about 18 rounds of chemo. She lost her all her hair and her nails
turned black. She developed naropathy in her hands and feet but suffered from
no nausea and was able to go to work everyday. We were all so optimistic
when it was time for the PEP scan results. To our devastation, the results showed
that the tumor only shrank from a 6.3 to 5.7 and the core of the tumor which
was suppose to get softer and translucent, according to the dr's, got harder
and denser. How does chemo make it worse?! They diagnosed her at stage IV and
said she had a 20% chance to live another 5 years. And the tumor had attached
to the chest wall so they can't operate. Also, they found 2 very very small
specs on her lungs, hence the stage IV diagnosis, but they are so small
that they couldn't get a needle through it to do the biopsy.However,
when she saw the radiologist, he was convinced that he could shrink the tumor
by 80% and get it away from her chest. He was very optimistic while the other
doctor was all doom and gloom. I don't know what to think! He started her on 40
rounds of radiation over the next 8 weeks (5x per week) and once a week she is
getting chemo treatment. The chemo drug she is getting now is carboplatin. I
researched this drug and it says that triple negative responds very well to
this specific chemo therapy which is great.My
mother was an RN for over 30 years and is a top nursing administrator so she
knows her way around dr's and hospitals. She's keeping a positive attitude,
started yoga and stopped eating chicken, beef, and pork adopting a plant based
diet keeping dairy to a minimum. She doesn't drink soda (she use to down two
bottles of Pepsi a day) and only drinks water, herbal tea, almond milk and some
juices. I became a vegetarian with her just so she doesn't have to go through
that journey alone.While
visiting last week, she lifted her breast and I could see the tumor coming out.
It was black and hard..it looked so evil and painful. It just broke my
heart.I'm a
mama's boy through and through. And proud of it. My mother is my best friend,
hero and confidant. If I go 48 hours without talking to the lady I start
leaving stalker like messages on her voicemail. lol.I feel
like she's doing all the right things. But will the radiation work? Will the
carboplatin work? Or is the doctor blowing smoke up our ass? Will the lifestyle
change work? I'm terrified. Absolutely terrified.0 -
mamasboy, I'm sorry to hear about what your mom is going through. I will say a prayer for her and you. We only hope and pray that the docs are doing the right thing for her. Cancer is a very complicated disease and everyone's experience is different. I don't really know what to say as far as her diagnosis and treatment except do some research and ask questions and if there is something you don't understand ask for clarification. Also, you may want to do a search for topics based on your moms diagnosis to see how others are dealing. As you can see there isn't much activity on this thread. Take care! Please let your mom know that our thoughts and prayers are with her.
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mamasboy, sorry I haven't been on the threads for several months but I must ditto candi07 (HI candi) and say that cancer affects us all differently and the doctors can only try different 'cocktails' of treatment as there is no telling what will work right out the door. That is probably what happened with her first round of chemo, it just was not what her tumor was going to respond to. The doctors she is now hearing from are not blowing off anything but trying something different that may have worked better in clinical trials. Don't give up.
Regarding the diet change, that is also something to be careful with. Research and make sure you and she are getting all the necessary nutrients that a purely vegetarian diet may not provide. Too little of some things may be just as damaging as too much.
I don't know where you and your mom are located but I strongly suggest she and/or you contact your nearest Sisters Network. They have a wealth of information and will walk with your mom down this road. They know about the clinical trials, chemo drugs, radiation treatments, etc. and can answer most, if not all, of your questions.
www.sistersnetworkinc.org is the main website and you can look to see if there is a chapter near her. Even if not they would certainly talk to you/her over the phone and answer questions. If you want to PM me (click on my screen name and send a message) I will give you my local chapter president name and contact info. She is a wonderful sister who is always willing to help.
Hope this helps somewhat and feel free to PM me. I may not be on the boards often but a PM sends an email to my personal account.
Blessings, Phyllis
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Oh, forgot to wish all my friends here a Happy New Year!
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I just had a reoccurrence and I am so upset ladies. Please pray for me.
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fighter34 sorry to hear that. I will keep you in my prayers. We are here for you.
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Praying for you fighter!
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Fighter, I am sorry about your recurrance. I will pray for you. Stay strong and faith-FULL.
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Thank you so much. I'll definitely look into the sister's network. I live in New York city but my mother lives in Buffalo. She has a nutritionist who is helping her create an optimal diet plan so hopefully they have her on the right road to recovery.
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Oh fighter, I am so sorry to hear that. Please know that you are in my prayers and please keep us advised how you are doing.
Blessings, Phyllis
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Hello all,
I too am triple negative, stage 2A, bilateral mastectomy. Tumor was found in right breast and abnormalities in left breast. I had my mastectomy done in January 2013 then chemo followed by radiation. There is no history of BC in my family but I had positive nodes I had BRCA test done in Dec go back for results on Feb 3. I had TEs implanted at the time of my mastectomy. Started getting weekly fill in Dec and I have 450cc in my left and 510 in my right, but I noticed that my right TE was lower and deflated. My DR had accidentally punctured my right TE
. So he asks me what I want to do now??? WTF!!! Are you serious???
(excuse my language, sorry).He gave me three options:
1.) Replace the punctured TE and start all over from scratch.
2.) Take them both out and replace with implants...(I have 600cc TEs in I want my full fill)
3.) Combination LD and Implants
So frustrated right now and can't think straight, btw he wants my answer by Friday.
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hushpuppie, sorry hear about issue with your TE. We have enough to worry about and go through and don't need mistakes like this added to it. Praying all goes well for which ever you choose. Take care this too shall pass.
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hushpuppy, also sorry you have to go through this with an idiot, insensitive doc. Only you can decide what option to take. Hopefully you have browsed some of the boards here on BCo and gotten valuable information to assist.
Prayers going up for your strength and peace even as I type.
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Sorry but HUH???
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yeah, what macyhen111 says.
???????????? - really!
at least it gave me a giggle, even if I don't know what I'm giggling about.
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Oh, maybe it's in code and we really should be angry and depressed?
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Hahahahaha!!!!
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Thinking of all my sisters and praying all is well.
Be blessed.
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