Triple Negative-How are you doing?

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Rena
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Re:Triple Negative-How are you doing? - Thursday, June 24, 2010 2:05 PM
Jojo! Your news, both about your health and about all the happy family events, is wonderful to hear! Woohoo! I'm doing well, thanks. No major news--just working and hanging out and wearing sweatshirts and trying to ignore the fog. My daughter lamented the other day that "all her friends" are getting married. Um, two of them, to be exact. But I guess when you're between boyfriends, it feels as though you're the only one not getting married. Her time will come. I hope the rest of your summer is filled with fun, happiness and continued good health. Love, Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Sadie Rose
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Re:Triple Negative-How are you doing? - Saturday, June 26, 2010 11:41 PM
  Hi Everybody,

Hope your week went well.  We had a beautiful day in the NW.  I started working with a trainer last week.  I am focusing on getting strong, firm (lol) and take some weight off.   I hope I stick with it.  It is a good time of year to get going. 

How are you all doing?

Warmly,
Sadie




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Gail Srebnik
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Re:Triple Negative-How are you doing? - Wednesday, June 30, 2010 12:47 PM
Hi there fabulous triples! Sadie I'll answer your question below but just wanted to say to everyone that June was a very busy month and once I got home to Colorado I found that I had no internet connection at my house so I only can get online when I go to town at the library and I have a lot of school stuff to deal with online, etc. etc. Anyways, I am doing fine and we leave here on July 13 for SF first and then to eugene for a few weeks. I'd love to see some of you so email me with some contact info, etc. Now for the low down:
I was diagnosed almost 4 years ago (8/11) and had a lumpectomy on August 22. I was in a clinical trial and had AC with Avastin abnd then taxol with Avastin; followed by 33 rads. I had no node involvement and have been cancer free (from BC) since. I did get diagnosed with CLL 2 years ago and I am working to beat it!
Regards and blessings to all, Gail
dx 8/11/06- 58 yrs young
62! yrs young now
lumpectomy 8/22/06
triple negative!
Clinical trial -AC and taxol with Avastin
Chemo done 1/25/07
33 rads done 3/30/07
Now - leukemia! 4/7/2008 carepage-GailSrebnikMeade

Nuzzys Nana
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Re:Triple Negative-How are you doing? - Wednesday, June 30, 2010 7:00 PM
Gail,
 
I'm glad you will be on the road again this year and in the NW. I'm still where I have been and hope we can meet up. Just give me a "heads up".
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

Sadie Rose
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Re:Triple Negative-How are you doing? - Wednesday, June 30, 2010 9:50 PM
   Hi Gail, Nuzzy's Nana, Rena and All,

Wouldn't it great if everyone checked in!!!  I'd love to know who is reading and how you all are.                     

Warmly,               
Sadie





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Lisa11388
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Re:Triple Negative-How are you doing? - Saturday, July 03, 2010 7:54 PM
Hello all!
As Sadie requested, i'm checking in!
 I am approaching 5 years since diagnosis.
 I did pay a visit to my onc last week for some swelling in my armpit area. He poked around but didnt feel anything unusual.  He said if it is still bothering me in a couple weeks, we will do a scan.  I had a lat flap, so my armpit has always had a fullness to it.  I have never had lymphedema, but wonder if it could be that.
Hope everyone is doing well, and enjoying the holiday weekend.
Lisa Long
Central Illinois
dx 8-29-05 age 43
mast & lat flap 9-30-05
triple neg brca neg
4.5 cm node neg
6 a/c followed by 5 taxol 10/05-3/06
28 rads 5/06-6/06
Currently NED

LRM216
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Re:Triple Negative-How are you doing? - Monday, July 05, 2010 11:55 AM
Linda checking in here. 
 
Haven't been on in a while, but as far as I know, am doing well.  Occasional pain here and there, lower back if I stand to long or sit at the computer too long at work and home, but it goes away in a couple of hours, but still scares the living heck out of me.  Was one year out from diagnose February 23, 2010 and still living with some side effects (mainly neuropathy in toes and a lot of tooth damage from the chemo), but working on all of it.  Not yet far enough out to have longer periods of confidence regarding this beast, but it has gotten a little easier.  Don't know that I will ever achieve a day without worrying about it, but I am going on the best I can.  Guess that's basically true for all of us - comes with the diagnose and the fear it instills.
 
Glad to hear everyone appears to be doing well.  I pray for us all.
 
Linda
...and miles to go before I sleep. 

Linda - diagnosed 2/23/09, age 62, IDC 1.2 cm, stage 1, grade III, 0/1 nodes, ER-PR- 2her-, Lumpectomy 3/25/09, reexcision 4/8/09 for clean margins.
4 DD A/C and 1 DD Taxol, switched to 3 DD Taxotere, rads x 33.

Rena
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Re:Triple Negative-How are you doing? - Monday, July 05, 2010 1:15 PM
Hi everyone. It's good to hear that you're all getting along and doing well. Linda, you'll get to the point of having days that are free of cancer thoughts. It just takes a little more time. Lisa, I had a swollen area under my arm, too. I had an ultrasound last week, and it turned out to be fatty tissue--ugh, but much better than something else, right? I hope that's all it is for you, too. Sadie, Gail, Patti, Nuzzy, and everyone else, I hope that you're well and happy. Love, Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Sadie Rose
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Re:Triple Negative-How are you doing? - Monday, July 05, 2010 10:31 PM
Hi Everybody,

JoJomom'scat, Anna, Rena, Linda, Lisa, Nuzzy's Nana, Gail and anyone I missed.  It is good to hear how you all are doing.  I couldn't get on the site for a couple of days and I was waiting to see if it was just a glitch. 

Linda~ I agree with Rena.  It takes a little more time.  I think after I hit the two year mark it got a little easier.

Lisa~ How is the swelling in your armpit area?  I hope it is improving.

Gail~Are you on the road?

Hope you all had a nice weekend.

Warmly,
Sadie


Lisa11388
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Re:Triple Negative-How are you doing? - Wednesday, July 07, 2010 6:55 PM
Sadie,
The swelling seems to have gone down.  I had a lat flap, so there has always been a fullness under my arm.  I dont know if i'm suddenly more aware of it or what.  I think it seems to swell and then go down again.  I'm starting to think its my imagination!  I dont know enough about lymphedema to know if it could be that.  I'm trying to keep track of when it feels swollen and what I have been doing when it does.  My onc said if I dont think its getting better to come back and do a scan.  Maybe i'll do a little research on lymphedema to see if I can figure it out.  Thanks for asking.
Lisa Long
Central Illinois
dx 8-29-05 age 43
mast & lat flap 9-30-05
triple neg brca neg
4.5 cm node neg
6 a/c followed by 5 taxol 10/05-3/06
28 rads 5/06-6/06
Currently NED

Sadie Rose
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Re:Triple Negative-How are you doing? - Thursday, July 08, 2010 7:54 PM
Hi Lisa,
I bet it could be lymphedema.  I didn't have any trouble with it until about a year ago so that was my five year mark.  My oncologist suggested a bra that didn't cut in.  Early on before I even had a concern with lymphedema she sent me to a lymphedema specialist who taught me exercises and massage techniques to lessen fluid build up.  I use them early on when I feel any pressure to prevent discomfort.  Salt really impacts the build up too.  I hope that is all it is because there are things to do to help.  They also suggest wearing an arm sleeve especially if you fly anywhere. 

Warmly,
Sadie

<message edited by Sadie Rose on Thursday, July 08, 2010 7:56 PM>

sazbro
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Re:Triple Negative-How are you doing? - Thursday, July 08, 2010 8:09 PM
Hi everyone

Just checking in.   I have my last day of radiation Monday, then it's my three month checkup in August.
Diagnosed 7/16/09 Triple negative, stage 3,
A/C 4 rounds 10/16/09
Taxotere 4 rounds 1/8/10 last round 3/12/10, partial mastectomy, 4/19/10,6 out of 11 nodes positive, 33 rads ending 7/12/10.

Sadie Rose
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Re:Triple Negative-How are you doing? - Thursday, July 08, 2010 10:13 PM
Sazbro,
    
Thanks for checking in.  Monday is your last radiation treatment!!  I hope you get to plan something fun to do with your new spare time.  How are you feeling energy wise?  I took off to the beach after my last treatment.  I mostly stayed inside reading a book, but it felt so healing to be by the water and fresh air.  I think we have to have the cheerleaders come to cheer you to the finish line.



Warmly,
Sadie





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Scooter123
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Re:Triple Negative-How are you doing? - Friday, July 09, 2010 9:05 AM
Checking in...All's well here.  I see the onc on 21 July for my regular 4 month check and don't expect any problems.  (God willing.)  I've been visiting my mom in Iowa, so it's been a nice break from the heat we'd been having at home.  Glad to hear everyone is doing well. 

Anna
<message edited by Scooter123 on Friday, July 09, 2010 9:07 AM>
Dx 8/2008,  IDC,  3.6 cm,  Grade 3,
0/8 nodes,  Stage II,  ER-PR-HER2-, 
Epirubicin/Cytoxan X  4,  Taxotere X 3










Diamond2Wheels
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Re:Triple Negative-How are you doing? - Friday, July 09, 2010 4:01 PM
Hi...Tia here...and  dx with TNBC 2/2006. 
 
Lots of surgery Loads of Chemo ...Mastectomy 5/2010
Just went into the lottery for the PARP inhibitor Clinical Trial TODAY!  I'm excited, yes...but really NO...it only means MORE chemo GEMZAR and CARBO...along with this PARP inhibitor which is going to destroy the gene that mutates and makes the cancer!  This PARP was designed for TNBC patients!  Crossing fingers!!! The drug itself is called INIPARIB.
 
Meahwhile since I got a RADICAL mastectomy in May...I thought it would be best to get to  radiation therapy...however, 3rd treatment I was hospitalized - couldn't breathe and my neck was feeling like it wasn't screwed on right!  Huge head and neck problems...DO said I could use some Xanex...Not a drug/pain killer kind of person...I'd rather feel the pain so I know I'm still here!  AND to feel what my body is telling me! 
 
Anyway, Left MSKCC where I originally was getting the rads...and went to a local radiologist...I do not give up!  Sim is this Tuesday. 
 
Do not know when I'll be picked for the lottery but the lab where I applied is one of the first in the country and there are only two OTHER candidates...so, it looks good...time will tell.
 
With other prior complications before surgery...The TNBC spread to my other side (lymph node) and to my lungs 6mm & 7mm and 3 other nodules measuring under 2mm.
 
Hey Lance got over his cancer.  I can too!  Lance not only had the manly cancer down there but also spread to his brain and his lungs...he is a walking miracle! 
 
Great inspiration isn't he?
 
Hope all is well with everyone here who has TNBC...I am also on the TNBC Foundation site where there are MANY of us TNBC and surviving just wonderfully!
 
Have a nice weekend...headded to Jones Beach for a concert!
 
 
 
 
Peace & Hugs of Love,
Tia

LRM216
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Re:Triple Negative-How are you doing? - Friday, July 09, 2010 7:44 PM
Rena and Sadie - ah - thank you - the two of you always lighten my load!  I look forward to the day I can just live it without pushing cancer out of my mind many times a day!

To all others - so glad to hear you are all doing well.  May we all enjoy the rest of the summer uneventfully!

Tia - Sending you nothing but the best of wishes.  I want it all to go away - forever - for you. 
 
Linda
...and miles to go before I sleep. 

Linda - diagnosed 2/23/09, age 62, IDC 1.2 cm, stage 1, grade III, 0/1 nodes, ER-PR- 2her-, Lumpectomy 3/25/09, reexcision 4/8/09 for clean margins.
4 DD A/C and 1 DD Taxol, switched to 3 DD Taxotere, rads x 33.

Gail Srebnik
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Re:Triple Negative-How are you doing? - Tuesday, July 13, 2010 5:52 PM
Hi fabulous triples! I have not had internet from our home here in Colorado until today!!!!! Of course we leave tomorrow. First to Berkeley and Sf and then driving up the coast to Eugene,OR. From there up to Seattle and Vancouver,BC and back to Colorado by August 5. We will be in Eugene from July 20 through August 1. I plan to see Sadie and Nuzzys Grandma and anyone else who lets me know where they are on my path. I am doing well and have a oncology visit back here on August 12. That will be 4 years since diagnosis of bc. I am having blood work done a few days before and pray for it to show that the CLL is leaving my body; or totally gone. I will be happy with just a slight elevation in my wbc count but since I am working on miracles I do believe it is gone! I always think of you all and hope today has been a good one for all.
Blessings, Gail
dx 8/11/06- 58 yrs young
62! yrs young now
lumpectomy 8/22/06
triple negative!
Clinical trial -AC and taxol with Avastin
Chemo done 1/25/07
33 rads done 3/30/07
Now - leukemia! 4/7/2008 carepage-GailSrebnikMeade

Nuzzys Nana
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Re:Triple Negative-How are you doing? - Tuesday, July 13, 2010 7:50 PM
Gail,
 
I am busy until noon on July 24 and on the 31st I am supposed to pick someone up at the airport. Just let me know ahead of time what your itinerary is between here and Seattle. I hope Sadie can join us too.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

Diamond2Wheels
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Re:Triple Negative-How are you doing? - Tuesday, July 13, 2010 7:57 PM

Thank you Linda!  That is very sweet of you to include me in your mail.

I am also hoping this all goes away.  I've been fighting this since 2006 and now that I had a mastectomy on the left side everything seemed to go haywire and it went to my lungs....I don't know if radiation is the answer...do you or anyone you know had radiation for TNBC? 
Peace and Hugs of Love,
Tia

Peace & Hugs of Love,
Tia

DeLois
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Re:Triple Negative-How are you doing? - Tuesday, July 20, 2010 7:15 PM
Tia,
I had chemo., area where lump use to be removed and radiation. 1 yr. later all is ok.
DX Nov. 2008 RB
Triple Neg. stage 2
Chemo 2008-2009
Lump remains removed March 2009
Radiation 2009
6 month check up all clear


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