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African American Women & Triple Negative Status

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Comments

  • indomitable1
    indomitable1 Member Posts: 136
    edited December 2009

    Amidoneyet- Congrats on moving to the next phase. I've had the "red devil' but as part of the TAC regimen. So I had taxotere in addition to your AC. It varies for everyone but the first 4-5 days left me feeling fatigued, sort of woozy and make sure you drink plenty of water. Your urine will be 'pink for the first day or two and possibly burn if you're not well hydrated. Make sure you keep your anti-nausea meds. Emend worked the best for me.

    Good luck and God's continued blessings. Hope you had a great holiday. BTW-are you using the chemo cocktail (liquid benadryl/liquid maalox) for your mucositis. My onc had one formulated with nystatin and lidocaine added (and cherry flavor). Make sure you get some.  

  • patoo
    patoo Member Posts: 5,243
    edited December 2009

    Hi Daffie, so sorry to have you come here but I agree with Indi on all points.  Check out the other threads she recommends and, very importantly, have your sister get a second opinion.  From the bit you shared it doesn't seem she should be in hospice yet - if she is not presenting with end-of-life issues why go there instead of spending the time, quality time, with her family and children.  I'm confused why the doc sent her there immediately but there may be other issues we don't know about.

    My prayer is for the family to receive the strength you will need to walk through this journey.

    Blessings.

  • Alaina
    Alaina Member Posts: 153
    edited January 2010
    Embracing a New Dream!

    Well beloveds. The verdict is in. I am in ovarian hypofunction (premature ovarian failure). My gynecologist could barely even FEEL my ovaries when palpating for them by hand. This is good news and it's bad news. Ultimately, it's good news.

    The downside is that I will never be able to have children biologically. Not even through a surrogate at this point. My eggs are fried, over-not-so-easy. LOL!!!

    The upside is that this is the state my body needs to remain in so as to limit the amount of estrogen flowing around. I need SOME estrogen to protect my heart and bones, but beyond that, it's poison. Managing limited amounts of estrogen in my body will give me the BEST chance of not having a recurrence of breast cancer in the future.

    I always knew this would be the likely outcome of the life-saving treatments I underwent this year. But hearing that it's actually a done-deal, no turning back...well, that's a bit sobering. I could spend lots of time, energy, and money trying to revive my fertility, and it's quite possible through the many miracles of science, I could personally enjoy the miracle of birthing my own child. It's been done for women with far more severe cases of breast cancer. Some of them had recurrences, some of them did not. I still can't wrap my brain around the ethical dilemma of bringing a new life into the world by taking your OWN life into your hands, but I suppose each woman has to work that out for herself.

    So, as I grappled with this news this week, I kept going back to my testimony at my T6 Party. I talked about "Necessary Losses" and embracing the NEW DREAM God gives you when one dream is destroyed.

    I don't know the new dream God has in store for me. But I know I've had to give a few up just in order to survive. And I'm ok with that. I'll choose LIFE each and every time, if given a choice.

    So later on tonight, as the clock strikes 12, join me in choosing LIFE and embracing NEW DREAMS for 2010! I'm excited for the future! God bounced me around a bit this year, but HE NEVER EVER LET ME GO!!! And for that, while tired and with much on my plate, I will make my way to a house of worship, and praise His Name and THANK HIM for allowing me to see another year!

    My anthem for 2010 is Sade's new single, "Soldier of Love" She sings it better than I can say it:

    I've been torn up inside...I've been left behind...So I ride...I have the will to survive...In the wild wild west...Trying my hardest...Doing my best...To stay alive...I'm a soldier of love...

    You can hear this on YouTube ---> http://www.youtube.com/watch?v=IvDaJaU5My4

    Goodbye 2009!!! Hello 2010!!!

    I'm Living Proof, Alaina

  • patoo
    patoo Member Posts: 5,243
    edited January 2010

    HUGS Alaina.  I'm with you and looking forward to 2010. 

    From today's 'Daily Bread' - "God's faithful care will extend to every day of the new year.  We can couont on that promise.  God holds the future in His hands with grace sufficient day by day; Through good or ill He gently leads if we but let Him have His way.

    Here's looking forward to new dreams in 2010.

    God bless you.

  • Alaina
    Alaina Member Posts: 153
    edited January 2010

    Thank you for sharing that Patoo!  God's Richest Blessings upon You & Yours this year and in the many years to come!

  • indomitable1
    indomitable1 Member Posts: 136
    edited January 2010

    Happy New Year everyone!

    Alaina-so well said. I'm with you...choosing life...and as for me and my house, we will serve the Lord. God bless all of us in this journey and into the new dreams and paths that will manifest in 2010.

    Patoo-I actually printed that ODB out and cut that poem out to paste on my computer at work so I can be reminded daily!

    God Bless Each and everyone. While in the house of the Lord on New Year's Eve, I prayed for all of us whose names/usernames I've learned and for all the BC and other cancer warriors and survivors as a group.

    'For I know the plans I have for you," declares the Lord. " Plans to prosper you and not to harm you, to give you hope and a future." Jeremiah 29:11

    Let's walk in His promises into this new decade, ladies.  

  • patoo
    patoo Member Posts: 5,243
    edited January 2010

    Amen Indomitable1, Amen.

  • Zipmum
    Zipmum Member Posts: 6
    edited January 2010

    Thanks to all of you for your encouragement.  Just reading your posts motivate me to fight the good fight.  For all of us "we will live and not die and declare the works of the Lord".

  • patoo
    patoo Member Posts: 5,243
    edited January 2010

    God's presence brings great comfort.  "Behold, I am with you and will keep you wherever you go."  - Gen. 28:15

  • indomitable1
    indomitable1 Member Posts: 136
    edited January 2010

    Amen, Pattoo & Zipmum. Tell it!

    Prayers are being lifted for Linda right now.

    Linda, if you're around-holla!

  • indomitable1
    indomitable1 Member Posts: 136
    edited January 2010

    OK make  it official.  I would be worried about Linda if I were the worrying type.  She's not logged on since Christmas Eve. I am again lifting her up in prayer and ask that you do the same.  She and Patoo have been the unofficial hostesses of this thread for the past year or so.  Please pray for her health and peace with me.

    Thanks.

  • patoo
    patoo Member Posts: 5,243
    edited January 2010

    You got it! 

    Blessings to all.

  • JourneyNC
    JourneyNC Member Posts: 39
    edited January 2010

    Hello All,

    Just passing through checking up on everyone. Hope all is fine. With me, I keep on Keepin' On. Not working at home as much and going into the office. Started a Strides for Strenth program at the Hospital's rehab center. Trying to get back in the swing of things, but my Onc. Nurse thinks the Chemo is out and I should be fine. Well, my body still feels beat up and getting out of a chair, I feel 90yrs old till I get the bones oiled then I'm 60. I'm actually way younger LOL. I completed all my treatment 11/4/09, but I still don't feel energized. Sometimes it's hard walking and tire very easily. Take care all!

  • patoo
    patoo Member Posts: 5,243
    edited January 2010

    Hi JourneyNC, nice to hear from you.  I don't know about your Onc nurse's idea but I've heard and read that it can be 6 mos to a year to get back to a reasonable "normal" after tx.  So take it easy and not push too much - tomorrow's another day and if it doesn't come it means our Lord did!

    Hey everyone - pipe in and let us know you're okay!

  • indomitable1
    indomitable1 Member Posts: 136
    edited January 2010

    Whoo-Hoo!!!! Completed radiation therapy of Tuesday!! Skin started sloughing on Monday.

    Just glad to be here! Got a certificate from Rad Techs/Staff/MD. Sipped sparkling grape juice that I brought in with my Radiation Buddies (my new BC friends and 1 prostateC friend). One of them brought me a plant and a card. Got gifts from family and friends. Thank you Jesus.

    My Buddies asked what I'd be on now-tamoxifen? arimidex? evista??? I'm on nothing but diet and exercise. (Had to explain the triple negative thing to them.) There's a 5K to raise money for triple negative research next month. A few of my Rad Buddies are going to participate with me and my family.

    Saw my surgeon yesterday. She said things look great (where there's skin) and that I would be seeing her every 3 months for the rest of my life. That's gonna be a long time........

    JourneyNC-keep up the walking/exercise. Do it instead of chores if necessary. Hang in there. One day at a time.

    Linda-I miss you and pray that your treatments are going well.

    OK, Next.

  • patoo
    patoo Member Posts: 5,243
    edited January 2010

    Hi all.  Just want to check in and give everyone a holler and let you know that prayers are going up for those in treatment, just out, long time out, whatever.  Prayer never hurts. 

    Blessings.

  • angelsabove
    angelsabove Member Posts: 39
    edited January 2010

    Hope it is ok to stop in here....I am not an African American but what I am is.......

    36 year old wife, and mom of 3 who has TRIPLE NEGATIVE.......

    Just wanted to say I feel we are all sisters and I pray daily for all of us.....

    MAY GOD BLESS US!!!!!!!

    Love u ladies

    Dropped in to see if anyone may have any latest stuff on this NON HORMONAL cancer...... 

  • amIdoneyet
    amIdoneyet Member Posts: 17
    edited January 2010
    Thanks!  My onc did prescribe Emend and I hope that it will work for me.  I will make sure that I increase my fluid intake.  I have had some burning with urination, only the week of treatment, and no one mentioned that it could be due to hydration!  I even had them check me during my last infusion treatment for a UTI.  No wonder it as negativeSmile.  I go Monday (2/1/10) for my first AC+Avastin treatment.  I am praying all goes well.  Did anyone have the SE of hands and nails turning dark due to AC.  I have had some nail discoloration with the Taxotere/Gemzar/Avastin, but wasn't sure if it may be worse with the AC.  I continue to keep everyone in my prayers and until the next time....relax, relate, release Wink
  • patoo
    patoo Member Posts: 5,243
    edited January 2010

    Amidoneyet - good luck with your treatments.  If no one comes along here to answer your questions on the nails (I can't) then check also the other threads as I'm certain you can get an answer.

    Indomitable1 - how is your skin healing since finishing rads?

    Welcome angelsabove - anyone can come and say HI.  The thread is not constantly active so prayerfully you are also checking the other threads for answers.

    JourneyNC - hope all is well.

    Blessings.

  • indomitable1
    indomitable1 Member Posts: 136
    edited February 2010

    Hi everyone!

    Amidoneyet- I had the TAC all together and got the nail darkening but don't know which caused it.

    Patoo- well, I now only have 2 small pink spots. It's true that it heals fairly quickly. Silvadene is great stuff-too bad I had to need it. I'm left with what looks like skin graft donor sites on my neck/supraclavicular region and breast area. The neck is quite visible with normal shirts/collars. I only own 2 turtle necks so oh well!

    Prayers are a wonderful thing. Angelsabove, I will be looking up the Vaccine trial for TNBC to see if anything new is going on but I always check in here first.

    God bless all! Continued good wishes of health, peace, and hope for all.

  • Lcharmie
    Lcharmie Member Posts: 156
    edited February 2010

    Hello All,

    Happy New Year to you all and hope the Holidays were good.  Mine was great.

    I did catch an "ugly bug" but am up and off running again.

    I am sorry to have not posted in a time or so!!  My computer has been on the blink and is still "ify". So this may be short.

    I am doing good as can be expected--still taking Chemo every week, but am stable.

    You all are always in my prayers!!  Stay Blessed.

    Need to get this to you all quick before this shuts down.

    Love to you all.

    Linda

  • patoo
    patoo Member Posts: 5,243
    edited February 2010

    ILinda - so good to hear from you.  Continue to take care of yourself and visit whenever you can.

    HUGS to you and all my friends on this board.

  • Lcharmie
    Lcharmie Member Posts: 156
    edited February 2010

    Patoo,

    It is good to post again.  You ladies are my family and I miss you when I can't keep intouch.  We have a Library that has computers, but we have not had a nice winter, like 10 inches of snow for Christmas Eve and we did not see ground til last week, plus I was sick with, only Lord knows what, it was an ugly cold, I was tested for pneumonia(neg) and for flu(neg)---I really think it was pneumonia and it did not show up on the x-ray, as I have had it before--the "violent cold" I had was just that!!  Missed 3 weeks of  chemo trying to get well.  Anyways, it does not feel good, to not be intouch with the group.

    Hello to Indomitable1, Alaina, JourneyNC, Amidoneyet, and to all the "new Sisters".  Welcome--I am sorry we have to meet like this, but glad we can be of support to each other.

    Take care and stay Blessed.

    Linda C.

  • indomitable1
    indomitable1 Member Posts: 136
    edited February 2010

    Yea!!! Linda's back.  Glad to hear that you are well.  Sorry about the "cold" just glad you're feeling better and back to kicking cancer butt. Yes, we've missed you, too.

    Hopefully not much action on this board means that others are too busy LIVING their lives to check in. But know that you all are being prayed for.

    Pattoo--Hugs backatcha!

    Peace, health and BIG blessings to all.

  • Lcharmie
    Lcharmie Member Posts: 156
    edited February 2010

    Hey Ladies,

    Back and then dropped outa sight again!!

    It is my computer and then the kid that was working on it--ya know how we do?!!

    I am good and was Blessed to Celebrate my 63rd Birthday 2-14-10..  My wish was not to be sick on my Birthday(with a cold, well with nothing, as the last 2 years I had  horrible colds on my Birthdays) Well I was not sick, but was Snowed in--but I had a very Blessed day!!  This week I got a cold again, but was on top of it, I think I picked up germs at the Cancer Center, I did not have a cold 'fore I went there.  Yep still doing chemo every week, it is going good, I see Dr. on Tues.  Will see what he has to say.  My jaws look and feel OK, with this cold lil aches here and there, but I don't want to think anything else and keep it in Prayer!!

    I hope everyone is doing as well as can be expected--- I see a lot of new names on "Post" here, I decided to drop in and post, and I will read "posts" later" and try to connect.  I have certainly missed you all.

    Indomitable1--Always thanks for the prayers!!

    Everyone stay Blessed!!

    Linda C.

  • JourneyNC
    JourneyNC Member Posts: 39
    edited February 2010

    Hi Everyone,

    Had my 1st Onc appointment after my treatment ended and now ready for my yearly mammogram.  I hear I need a comprehensive mammogram (don't know what that is) and look forward to a good report.  Tired as heck, very low blood pressure and need a nap during the day at work LOL. Anyon go through this?  I guess it's food for par and can't expect me running a marathon too soon. BTW, my toe nail is coming off and they say it's not from chemo. I say it's from the toxanes from chemo left in the body.  What do you think?  Thanks All and my God Bless All of You!!

  • patoo
    patoo Member Posts: 5,243
    edited February 2010

    Hi ILinda, welcome back.  My DS shares your birthday (he turned 26).  Happy belated...

    JourneyNC, strange about the toenail because I'm losing the one on my big toe - left foot.  But, I didn't do chemo and rads ended in May.  Don't know if it's related to the Arimidex; why would it only affect one toe and not all, at least on the same foot.  It actually started turning black and then I've been doing water aerobics so I guess that bleached it and 2 days ago I discovered it lifting and almost totally detached.  I have a bandaid on just so I don't rip it off accidentally.

    Hi to all my sisters.

  • JourneyNC
    JourneyNC Member Posts: 39
    edited March 2010

    Hello All!

    Patoo, I am going to the podiatrist to get this looked at. My toes have been turning the black that was during chemo. Onc nurses tell me the seen this way after chemo and possibly neuropathy. If I turn my foot a certain way, I feel an "eel" like electric feelings along the side base of my right foot. Not going to think new issues, but I Keep on Keeping on!! LOL.

    Good News...I went to a cardiologist for high blood pressure and to look at how low it has been and also low potassium levels....so she took me off the HBP pills. Prayerfully Forever!!!Smile

    Also, I have my yearly mammogram to be done this coming Monday and Pray all IS well in these boodiful boobs...Laughing Ciao Ladies

  • patoo
    patoo Member Posts: 5,243
    edited March 2010

    Hi JourneyNC - will keep you in prayer that the mammo will be clear.  Nice that you are off the HBP meds.  Did you change diet or exercise as I know both can help to lower blood pressure.

    Let me know how it goes with the podiatrist.  I'm still keeping a bandaid on the big toe because it hasn't yet totally detached.  I can, however, get my finger under it to just about feel the nailbed.  Not sure what's going to be there when the nail falls off entirely.

    A BIG HUG and hello to the rest of my sisters out there.  Chime in and let us know how you are doing.

  • indomitable1
    indomitable1 Member Posts: 136
    edited March 2010

    Hi everyone,

    Congrats JourneyNC on your BP. Hope your feet get better soon & here's to an unimpressive mammogram on Monday!

    Hey ILinda & Patoo! Hope you all are well.

    Completed my first 5K ever this past Saturday. It was to raise money for research for Triple Neg.  We had so much fun in the cold & rain (in Florida at that). The whole family ran and of course I walked.  They rewarded my training efforts with my very own in-home elliptical! (I've only been hinting  since I completed tx).  

    God Bless everyone. Hope you are well. Peace & Health!

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