I was just wondering who all out there is TN and stage IV. What was your original diagnoses and your progression. What date you were diagnosed. I'm curious to see how we are doing now. I know we lost a lot of our sister in the past few months and we have some not doing so well right now. But there are a lot of us out there still trying to kick butt.. I'll start...
11/5 dx Right breast Only
Seven local recurrence beside spreading to skin (IBC)
Current Status: Mets to skin, neck, back and down my right arm., all of my chest wall
I wanted to revise since you ladies gave so much great info.
I have level II neuropathy from a Phase I drug trial two yr ago. I have a very large right arm that has cancer and lymphedema in it. I will have chemo #10 and treatment #52 next week. I doing another Phase I trial with Doxil and hyperthermia just to treat my skin mets. I'm very rare that I have all this disease and no organ/bone mets after almost four years. Just shows how different we TN ladies can be.
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wayover20 Joined: Nov 2004 Posts: 597 |
Jul 7, 2009 09:17 am
wayover20 wrote:
Well this week the se's of the abraxane are kicking my a** with really bad aches to knees and hips. For some reason I don't remember this being so bad when I had this same regime back in November. I'm trying not to take so much tylenol and motrin (they do work for a while) but it's hard. I"m walking like a 90yr old. The other thing is the skin mets--which is the reason for the increase abraxane schedule--while they have gotten smaller, they are still there. Next week I see my onc and I'll ask is that good enough or does she plan to switch me to Gemzar and Carbo to see if we can get them gone. Not sure if I want to "use" those meds that way or should I wait till I really need them. I read somewhere that skin mets could be a sign of disease progression so that's why my onc wants to keep treating. What do you think? Pat
Dx 8/3/2008, ILC, 6cm+, Stage IV, 0/17 nodes, ER-/PR-, HER2- |
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virginiamom… Joined: Feb 2009 Posts: 118 |
Jul 7, 2009 09:32 am, edited Jul 7, 2009 09:35 AM
by virginiamom
virginiamom wrote:
I am triple negative and stage IV with numerous mets to the lungs. Diagnosed in February of this year. I just turned 40. Dx 3/2009, IDC, 3cm, Stage IV, Grade 3, / nodes, mets, ER-/PR-, HER2- |
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wayover20 Joined: Nov 2004 Posts: 597 |
Jul 7, 2009 09:41 am
wayover20 wrote:
Hello virginiamom and so sorry you're going thru all this at your young age. yes 40 is young! I wish you all the best. Are you currently on chemo? what kind? Pat
Dx 8/3/2008, ILC, 6cm+, Stage IV, 0/17 nodes, ER-/PR-, HER2- |
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virginiamom… Joined: Feb 2009 Posts: 118 |
Jul 7, 2009 09:47 am
virginiamom wrote:
Hi, I am on Doxil right now. The Pet Scan I had last week said it's working. My breast tumor is shrinking and my lung mets are getting smaller. Thank you. Dx 3/2009, IDC, 3cm, Stage IV, Grade 3, / nodes, mets, ER-/PR-, HER2- |
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FloridaLady… Joined: Dec 2006 Posts: 2,155 |
Jul 7, 2009 06:49 pm
FloridaLady wrote:
virginiamom - glad your chemo is kicking butt! wayover, Skin does not necessary mean progression to distance mets just because the skin is more aggressive. I have skin mets all over my front and back and right arm and still bone/organ mets?? This disease is so unpredictable! I hope your chemo gets easier. I found Gemzar/Carbo pretty easy. I'm looking for my next chemo right now. trip neg stageIV spread to IBC (2X) & 7 recur's, Treat Alt & Conv
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FloridaLady… Joined: Dec 2006 Posts: 2,155 |
Jul 14, 2009 05:14 pm
FloridaLady wrote:
Good bye too another dear TN sister...VickiG trip neg stageIV spread to IBC (2X) & 7 recur's, Treat Alt & Conv
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wayover20 Joined: Nov 2004 Posts: 597 |
Aug 12, 2009 04:42 pm
wayover20 wrote:
updated myself on new thread "bone mets need encouragement". I hadn't posted much since dear Vicki passed. It was such a shock, so unfair all of this. Pat
Dx 8/3/2008, ILC, 6cm+, Stage IV, 0/17 nodes, ER-/PR-, HER2- |
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Kelolo Joined: Aug 2007 Posts: 25 |
Aug 14, 2009 02:54 am
Kelolo wrote:
Diagnosed 08/07: IDC left breast, TN, grade 3. My oncologist found a lesion on my liver the week before I was scheduled to start chemo. At the time I chose not to biopsy it because I didn't want to postpone starting chemo.
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bettelou68 Joined: Jul 2008 Posts: 896 |
Aug 14, 2009 07:27 am
bettelou68 wrote:
I was recently diagnosed as Stage IV, and my cancer, which was ER+ is now TN 6/08: IDC, left breast 8/08 SNB(negative) Dx with IBC 8/08 thru 12/08 TAC chemo with poor response 1/09 Mastectomy with multiple complications 3/09 Surgery to fix above 4/09-5/09 rads 6/09 Femara. Dc's due to bad SEs 7/09-8/09 Dx with mets to lung, hilar and mediastinal nodes. Bronchoscopic biopsy shows TN BC 8/09 Enrolled in clinical trial for Gemzar and carboplatin with PARP inhibitor. And thats where I am now. Hoping chemo kicks cancer's butt. Bette www.caringbridge.org/visit/bettedietrick "Yet in all these things, we are more than conquerors through Him who loved us."Romans 8:37
Dx 8/20/2008, IBC, 6cm+, Stage IV, Grade 3, 0/6 nodes, mets, ER-/PR-, HER2- |
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wayover20 Joined: Nov 2004 Posts: 597 |
Aug 16, 2009 04:45 pm
wayover20 wrote:
(((((Kelolo)))))) Best wishes and prayers for good scan results. I know it's hard to try to be positive when you feel so bad or when your mind won't let you. Everything we read says "stay positive!".....yea right, not so easy to do. What about the PARP trial for trip negs, can you get into that?? Bette.....my onc who is the lead researcher at the clinic I go to says very positive things about that PARP trial and says when I need it she's going to get me into it ASAP. Please keep us posted on how you do, very interesting stuff. Good luck to you! Pat
Dx 8/3/2008, ILC, 6cm+, Stage IV, 0/17 nodes, ER-/PR-, HER2- |
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Kelolo Joined: Aug 2007 Posts: 25 |
Aug 17, 2009 01:12 am
Kelolo wrote:
Thanks for the good wishes. I am apprehensive about my appointment this week. I have been reading posts here over the past several days and making a list of possible treatment options that we haven't explored yet. I have added the PARP trial to my list and will ask my oncologist on Tuesday. I hope I qualify. Keeping my fingers crossed. |
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bettelou68 Joined: Jul 2008 Posts: 896 |
Aug 17, 2009 03:01 pm
bettelou68 wrote:
Today I am anxious about starting the trial. Scared of chemo SE's which were super-bad for me on AC&T. Do not know what to expect from Gemzar and Carbo. Bette www.caringbridge.org/visit/bettedietrick "Yet in all these things, we are more than conquerors through Him who loved us."Romans 8:37
Dx 8/20/2008, IBC, 6cm+, Stage IV, Grade 3, 0/6 nodes, mets, ER-/PR-, HER2- |
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lesamarieke… Joined: Aug 2009 Posts: 24 |
Aug 23, 2009 08:38 pm
lesamariekey wrote:
Hi All, I have been reading everything written on Triple Negative, Mets. I would like to know what PARP means. I don't know much about what I have but I want to learn.My Dr. is giving me Taxotere with Cytoxan, 9 treatments or more. I have only had one. And my hair is starting to fall out. I had joint and bone pain, garbage mouth, my mouth is what really bothered me the most. No taste buds. I can live with that I just want to get rid of the Cancer. I would like to know more about what I should do as far as asking questions. Please Help. Sincerely Lesa Marie Key. Lesa Key
Dx 6/10/2009, IDC, 4cm, Stage IV, Grade 3, 1/13 nodes, mets, ER-/PR-, HER2- |
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Duffymom Joined: Jul 2006 Posts: 167 |
Aug 23, 2009 11:28 pm
Duffymom wrote:
Sad to say that I am finding it encouraging to read from so many triple negs. 1st DX July 06, 9cm tumor in right breast and chest wall; 4 treatments of A/C; dbl mast. 9/06 (tumor was gone); 4 treatments of Taxol; 30 rads. NED from 4/07 to 9/08. Spread to lots of bones, back in chest wall and right arm lymph nodes. 15 rads to spine with 4 rounds of Taxol. Just completed 11th round of Zomeda/Gemzar/Carboplatin/Avastin. Felt great after all of them but have now had 3 allergic reactions, each time getting worse so oncologist plans on Ixempra. After posting and reading on these threads I'm really scared. I'm going to talk to her about other options. Last PET scan in March showed progress. Next PET is 9/8 and meet with dr 9/15 to discuss results and have treatment. I feel great and don't want to change that. I love my job teaching pre-school 3 days a week. After reading SE of Ixempra on these threads I feel like I only have 3 weeks left to feel good! How long have ladies been on Ixempra and are there other options after that? I don't think I'll qualify for PARP since usually given with Gemzar/Carbo. I'm glad I'm not alone being a Triple Neg. - Hugs to you all! - Kathy |
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