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denise07 
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Joined: Jun 26 2010 Location: pa Status: Offline Points: 997 |
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 Posted: Apr 06 2013 at 2:38am |
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Hello Girls,
So very sorry you have to be here this is one club no one wants to be in, tests are crueling and the unknowing is the worst, but once you find a game plan you will get through this!!! Donna gives wonderful advice and is so on top of things she is so very supportive and intelligent, I always did follow her advice and I still do you will all get through this you will almost six years later for me and this is the best support I have found I feel like I have a whole new family.
My Prayers are with all of you...
Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Rocklady
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Joined: Apr 04 2013 Location: NYC Status: Offline Points: 15 |
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Posted: Apr 06 2013 at 2:38pm |
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Thank you all. I live in Staten Island, NY and will be treated here. Sloan does not take my insurance. Just anxious to get the ball rolling with this thing. So glad I found this site. I am sure I will have many questions in the future. Have a wonderful weeknd.
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Mattie
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Joined: Apr 17 2013 Location: California Status: Offline Points: 12 |
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Posted: Apr 17 2013 at 7:14pm |
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Hi, I'm new to this forum. I just found you all Googling myself into a frenzy.
I was actually diagnosed in February 2012. I opted for a right mastecomy I had 4 positive nodes. I began immediate reconstruction. I was staged as IIIA. I had 6 rounds of Taxol and Cytoxane. My DIEP Flap began to fail right before I started chemo, so it was removed so as not to hold up my treatment. After chemo was complete, my PS went in to clean the area up for radiation, as we planned to deal with reconstruction after rads. She removed some skin during that procedure and it tested positive for cancer cells. Everyone was concerned as I had clean margins at the time of my mastecomy. It was agreed that I was proceed with radiation and receive additional chemo in case my cancer was reaistant to the T/C. I had 40 treatments of rads all with the bolus to give extra to my skin. In January of this year I began 4 rounds of Doxil. After my second round, my tumor markers doubled. My doctor said wait a month and try again and one, the 27-29 is up even higher-78. This the first time my marker numbers have gone up during my treatment and I'm scared. Of course, found this out the day after I'd made surgery arrangements with my PS. I'm scheduled to have a catscan on Friday. I've already had a brain MRI and bonesan due to pain issues I was having while doing rads. Help! Any info, words of advice would be appreciated I just turned 50, I'm single, no kids and feeling very alone. |
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Rocklady
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Joined: Apr 04 2013 Location: NYC Status: Offline Points: 15 |
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Posted: Apr 17 2013 at 8:04pm |
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I felt so bad reading your post. There are so many breast cancer support groups out there (although I haven't hooked up with any yet). Know you are not alone. You need a friend you can email me anytime at Rocklady580@aol.com. I am just starting my journey. Waiting for the results of the BRCA test to decide if I will have a bilateral mastectomy or just a lumpectomy. Meeting with the oncologist this monday. Good luck, try amd stay positive and hang in there.
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Apr 17 2013 at 8:06pm |
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Dear Mattie,
I am so sorry you are having all these problems. I am glad you found the TNBC site and decided to post. Hopefully we can help you feel less alone. One question? Did you have the DIEP Flap surgery before chemo? I could be reading your post incorrectly.
One thing I would suggest is to get the cancer under control before attempting reconstruction again. I pray that all of your scans and the MRI show nothing of concern. Also, have you gotten a second opinion before or during your treatment process. I am not a whiz on how to accomplish that, but others will be along to guide you in that process, if needed.
Keep posting and let us know how you are. WE ALL UNDERSTAND!!
Love and God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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Mattie
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Joined: Apr 17 2013 Location: California Status: Offline Points: 12 |
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Posted: Apr 17 2013 at 8:13pm |
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Thanks Rocklady and Lillie. Love and peace to you both.
Lillie, I started reconstruction at the time of my mastecomy and it failed some six weeks later, which I hear is uncommon. I've had a second opinion and that doctor said he wouldn't opt for the additional chemo, but instead would wait to see if anything developed. I went with my original oncologist in an attempt to be proactive. Rocklady, best luck to you on Monday. |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Apr 17 2013 at 8:50pm |
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Hi Mattie,
Welcome, but sorry you have a reason to be here (TNBC). I just wanted to say you've found a great for information and support. The ladies and men on this forum are so helpful and will help and support you through this journey. Wishing you the best on your upcoming scan. I know the anxiety they can bring. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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arabella
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Joined: Jan 28 2013 Location: Alabama Status: Offline Points: 288 |
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Posted: Apr 20 2013 at 12:10am |
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Hi Mattie!
Sorry you are having to go thru all this.......hope your CT scan went smoothly today and you'll get favorable results. I too am alone (widowed on July 1, 2012). I've no family here where I live. My single 25 yr. old daughter lives almost 4 hrs. away. The sense of aloneness with this cancer can be so hard. It has been hard for me too.....one thing to have cancer.....another to have to make all these decisions by yourself and to not have anyone in your home just to talk to about it.....just to be there.....to help you overcome the fear that comes with this disease. Please know that we are all here for you and we care. Please post and update us on what's happening with you. Wishing you peace..... Kaye |
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Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy |
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Mattie
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Joined: Apr 17 2013 Location: California Status: Offline Points: 12 |
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Posted: Apr 23 2013 at 11:10am |
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Thank you ladies for the warm welcome and encouragement. I got the results of my scan back and the cancer has progressed to the hilar lymph nodes in my chest. My doctor says we're no longer working for a cure, but to control it. Definitely the last thing I wanted to hear.
I'm seeing another oncologist tomorrow for a second opinion and information on how he'd deal with what's going on, because again my doctor was very vague in his plan of attack. Faith is keeping me going, but I am so thoroughly dissapointed. I haven't been officially restated yet, but I'm guessing I'm stage 4. |
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TriplePositiveGirl
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Joined: Oct 07 2010 Location: Los Angeles, CA Status: Offline Points: 667 |
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Posted: Apr 23 2013 at 1:00pm |
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Hi Mattie -
I so very very sorry to read this news. Getting a second opinion (even a third) is VERY important. I see that you are in California. I am in Southern Cal so if you are in the area and need any recommendations please let me know. Remember to take it one day at a time. I don't believe that a cure or NED is not attainable at any stage (there are women on this site who were stage 4 and are now in remission). Keep the faith and have hope. Best Wishes, Lisa
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Mum of 4
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Joined: Apr 25 2013 Status: Offline Points: 2 |
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Posted: Apr 25 2013 at 6:38am |
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I am new to this horrible disease, just a month in. I have had surgery and one lot of chemo. No lymph involvement and clear margins. 3 more lots of chemo to go. Then ray. I hate every aspect of,it and dread,losing my beautiful thick hair.
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debB
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Joined: Sep 14 2011 Location: Central Illinoi Status: Offline Points: 692 |
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Posted: Apr 25 2013 at 8:20am |
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Hi Mattie,
So sorry to hear about your apparent progression. Definitely seek the second (or third)opinion and do not settle for 'vague'. Dr. Sledge is now at Stanford and would highly recommend him but will warn you that he doesn't do tumor markers. But, he is very knowledgable with TN and compassionate! I hope you find answers that can give you peace of mind and stable or vanished disease! Deb |
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Charlene
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Joined: Aug 14 2010 Location: Atlanta, GA Status: Offline Points: 613 |
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Posted: Apr 25 2013 at 10:04am |
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Mum of 4:
I have been where you are now. I too hated every aspect, including the loss of my hair. But, there is a light at the end of the tunnel. Three more chemo rounds--you'll make it. You'll discover what works for you as far as side effects go. When chemo is over, I believe you will find radiation much easier. About a month after your last chemo, your hair will start to come back. It will take a while, but it will happen. Someday all of this will be in the rearview mirror. Hold on to that. "You've gotta have hope." No lymph involvement and clear margins are good things in the midst of the horrible. Wish you the best. Charlene
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DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED |
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Mattie
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Joined: Apr 17 2013 Location: California Status: Offline Points: 12 |
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Posted: Apr 25 2013 at 3:20pm |
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Hi ladies, I wanted to post an update. The results are in on my catscan and there are new areas in my hilar lymph nodes. I got a second opinion and it looks like I will be changing doctors. The new one seems more passionate and that's what I need right now. I had a PETscan this morning to see if anything has been missed. Hoping all is well, I will start Carbo/Gemzar Monday.
I will be checking in as this goes forward. Tha is for all your kind words and encouragement. |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Apr 25 2013 at 3:35pm |
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Mattie,
I had Carbo/Gemzar with my recurrence and it was very effective on my tumor. Good luck and hope you see similar results. Don't feel bad about changing doctor's. We need the best care and if one's not working out, you need to fire them! There are too many good, compassionate oncologists out there to settle for anything but the best. I didn't lose my hair while on this combo and was able to work during treatment. Keep us posted on how you're doing. Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Mum of 4
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Joined: Apr 25 2013 Status: Offline Points: 2 |
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Posted: Apr 25 2013 at 4:51pm |
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Thanks Charlene. I am trying to hang on to the positives but it is hard sometimes in the middle of the night. The good thing is I am coping very well with the chemo. I keep telling myself I am a strong person.
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CJWatson
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Joined: Dec 11 2012 Location: Florida Status: Offline Points: 15 |
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Posted: Apr 26 2013 at 12:39pm |
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Hi ladies,
I have been lurking here since I was first diagnosed back in Oct with TNBC and I have learned so much from those who have arrived before me. I send my best wishes and prayers for all of you to beat this monster. Have any of you had to deal with residual carcinoma? Briefly, I was diagnosed with TNBC with two lumps in my right breast, each over 2.0cm, along with a few nodes, IIIa. After the biopsies, a PET scan was done, and an immediate start of AC x 4 chemo resulted in the lumps pretty much no longer palpable, nor the node or two, by the second infusion. I had a lumpectomy a few weeks ago which verified that the first lump no longer existed and no cancer found near the marker. The second lump had become a 3mm bit of positive residual carcinoma. All margins were clear, the nearest margin to this 3mm bit of residual cancer was 8mm away, and it was of course removed during the LX. The sentinel node and another node were negative. So all that is left is this tiny piece of nightmare. I have been healing from the LX incisions and hoping to start radiation soon. My chemo onc (I don't have a 'team' here) and I are still arguing over more chemo first before rads. I had opted out of Taxotere after the A/C was done in late Dec because of the side effects, which accounts for the long time period until my LX early this month. I am arguing for radiation first and then I may discuss further chemo; he is arguing the reverse. A PET scan and mammo are scheduled for Oct and Aug respectively. I guess I am just asking for some input. Although I have a few friends and acquaintances who have battled breast cancer, none had TNBC. (Where do you go to post up your cancer history? I've hunted everywhere) Thanks so much. CJ |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Apr 26 2013 at 1:21pm |
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CJ,
To get your information in your signature so that it shows up at the bottom of your posts like mine, go to the upper left side of your screen. Click on Member Control Panel, then Edit Profile. Scroll down until you see Signature. Type your information in the box. Then scroll down to the bottom of the page and click on Update Profile. It will save anything you've added. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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CJWatson
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Joined: Dec 11 2012 Location: Florida Status: Offline Points: 15 |
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Posted: Apr 27 2013 at 10:10am |
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Thank you so much, Donna. I'll get the dates together.
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Apr 27 2013 at 10:53am |
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CJ,
Can you get another opinion from another onc or radiation oncologist. Since you didn't have a complete pcr from chemo, there are other options. I'm not a medical professional, but I believe radiation is usually followed after neoadjuvant chemo and lumpectomy. The rads will hopefully kill any remaining cells that might remain. Several members have followed up with more chemo, usually part of a clinical trial. I hope some of them will post and share their story. Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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