4 years with mets and counting!
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Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=11179
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Topic: 4 years with mets and counting!
Posted By: lotusblossom
Subject: 4 years with mets and counting!
Date Posted: May 16 2013 at 5:06pm
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Hello, I just got my scan results today and I continue to have regression on Navelbine. I have been on this chemo for 21 months now. I was expecting to gets results of stable or even slight progression, but I am thrilled with this wonderful news!!!! Lotusblossom
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Replies:
Posted By: Suds
Date Posted: May 16 2013 at 5:34pm
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This is such wonderful news! Gives hope to all of us! I hope and pray for this regression to last a long, long time. -Suds ------------- 1/2012: 2cm mass, 1/16 nodes 4 AC, 4 T, mastectomy, 6.5 wks radiation Negative CT scan after chemo 3/2013: mets to nodes, brain, lung, early bone 4/2013: Neurosurgery + SRS 4/2013: Gem/Carbo started |
Posted By: Gabj
Date Posted: May 17 2013 at 1:17am
| This is wonderful news. May Navelbine work for many more. |
Posted By: btstark2003
Date Posted: May 17 2013 at 4:24am
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Lotusblossom, Wow! So inspiring. How do you feel? What else do you do to defeat the cancer, like with your diet, exercise and supplements. It sure seems to be working! Beth ------------- 2008 Stg1 TNBC, LX, FEC+T, rads 2010 2.5cm tumor BRCA-, BMX,CMF 2011 LN mets, Gem/Carbo, surgery, rads 2012 lung mets, PI3Ki/taxo 2013 anti-PD-1 2014/15 Xeloda, IMMU-132, eribulin Aug 2015 Keytruda |
Posted By: 123Donna
Date Posted: May 17 2013 at 8:16am
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Lotusblossum, Congrats on the good news! Donna ------------- 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 |
Posted By: snickers
Date Posted: May 17 2013 at 9:48am
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Lotus Congratulations!! What kind of mets do you have? I had mets to liver and lungs and have been NED for about 7 months now. Still on Gemzar ------------- DX 10/31/11 6/13 lung/liver mets 9/13 NED lungs,liver met part.rem 5/4/13 NED lungs&liver 11/5/13 NED lungs..liver mets back LOTS LVR METS had y90 liver trtmt mets contrld 1/3/14 num brain mets |
Posted By: lotusblossom
Date Posted: Dec 05 2013 at 7:19pm
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Hi all, Just thought I would update you all. I have now been on Navelbine for 27 months and continue to have good results. I have had mets for 4 1/2 years now and continue to have a very good quality of life. I wish you all the vey best for the holiday season! |
Posted By: 123Donna
Date Posted: Dec 05 2013 at 7:27pm
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lotusblossum, That is great, no excellent, news! Thanks for sharing it with us!! Hugs, Donna ------------- 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 |
Posted By: Adnerb
Date Posted: Dec 05 2013 at 10:38pm
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Snickers and Lotusblossom, Good news for both of you! Hugs, Brenda ------------- '05 Stg1 TNBC Lump, SNB, A/C, 33 rads '09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex. '13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole. '14 Abraxane in July '15 Abraxane in March |
Posted By: simplelife4real
Date Posted: Dec 06 2013 at 6:08am
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LotusBlossom, thank you for sharing how well you have been doing. That is awesome and gives hope to me and others. ------------- DX Aug 2013 @ age 60, Stage 2b, grade 3, 2.3 Cm, node positive, BRCA-; neoadjuvant taxolx12 and ACx4: 2/13/14 LX and ALND-2mm residual in 2 nodes |
Posted By: hopeful57
Date Posted: Dec 06 2013 at 9:35am
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That news gives all of us hope. Thank you for sharing. May you and yours have a blessed holiday. |
Posted By: MothersDaughterTNBC
Date Posted: Dec 06 2013 at 10:10pm
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Woo hoo Lotusblossom! So glad to hear the good news!! ------------- Mom's Diagnosis: 07/2013 - TNBC with lymph nodes and liver involvement 07/2013 - Adriamycin & Cytoxan 09/2013 - Doxil https://www.facebook.com/PrayForJanice |
Posted By: Lillie
Date Posted: Dec 06 2013 at 10:32pm
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Dear Lotusblossom,
How wonderful to hear your excellent news. I am sure you have given many ladies hope, courage, and peace that no amount of money could buy.
Bless you,
Lillie ------------- 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 |
Posted By: lotusblossom
Date Posted: Feb 14 2014 at 8:51am
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Hi All, Just a quick note to update you. I have been on Navelbine for 30 months. This is my fifth line of chemo since diagnosis at stage IV in June 2009. At that time, I had mets in lungs, biliary tract, spleen, hilar nodes, mediastinal nodes, axilla nodes and bones. I found out this week that all that remains is 1 nodule in the lungs, measuring 1 mm. Apparently, I am considered in remission, although I thought you had to be NED for that. I was diagnosed stage IV at age 45. I am turning 50 next week. Never give up hope. Lotusblossom |
Posted By: sabinecalifornia
Date Posted: Feb 14 2014 at 9:56am
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So very happy for you. Keep on fighting. Never give up! Happy Valentines Day for you Sabine ------------- DX TNBC 7/11 @ age 50, Stage 2A Grade 3, 1/19, LE/AD 8/11, BRCA1/2 neg., 4 A/C, 10 Taxol, 2 Abraxane due to allerg. react. to Taxol, fin 3/12. 33 Rads 6/12. NED CT 8/12, 10/13, 10/14 |
Posted By: Gretchen
Date Posted: Feb 14 2014 at 10:10am
| Lotus, you said that navelbine was the 5th chemo you tried...what were the first 4? |
Posted By: Kellyless
Date Posted: Feb 14 2014 at 10:43am
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Lotusblossom, my grandmother had Mets in the bone for 21 years :) she was a legend at MD Anderson! You, like she, are an inspiration! Happy Valentine's Day! ------------- IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED! |
Posted By: 123Donna
Date Posted: Feb 14 2014 at 10:52am
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Lotusblossom, Wonderful news! Thank you for sharing. I'm so happy for you - you've achieved remission and turning 50! You give us all hope. Donna ------------- 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 |
Posted By: Lillie
Date Posted: Feb 14 2014 at 11:35am
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Dear Lotusblossom,
Continue the fight and keep inspiring others with this wonderful news.
God Bless,
Lillie ------------- 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 |
Posted By: Loveforlife
Date Posted: Feb 14 2014 at 12:47pm
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Lotus, Thanks for the update. It gives me hope! Happy Valentine's day to you. Laura ------------- Dx 1/2011 2b, Gr 3, TNBC, AC/T chemo, L lumpectomy/re-excision/lymph node diss/rads. DX DCIS R Breast 4/2012 - Lumpectomy/Rads. DX Lung Spine mets 5/2013 Carbo/Gemzar 10/2013 Xeloda 1/2014 Ixempra |
Posted By: Adnerb
Date Posted: Feb 14 2014 at 1:13pm
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I think "remission" or "near remission" is what the doctors use in the medical records? Those are the words that I saw on the last page of my records. I've only had NED for a little over 3 months. I'm hoping to follow in your footsteps, lotusblossom! Your positive attitude is contagious and I'm sure it has helped you get to where you are now. May you have many, many more years of remission! Hugs, Brenda P.S. Do you have any symptoms from the lung nodule? ------------- '05 Stg1 TNBC Lump, SNB, A/C, 33 rads '09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex. '13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole. '14 Abraxane in July '15 Abraxane in March |
Posted By: lotusblossom
Date Posted: Feb 14 2014 at 2:16pm
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All, Thanks for the kind words. Gretchen, The 4 other chemos were Xeloda, Gemzar, Caelyx(which I think is called Doxil in the US) and Taxol. Adnerb, I never had any signs from any of my mets, never felt anything...... Lotusblossom |
Posted By: TriplePositiveGirl
Date Posted: Feb 14 2014 at 7:12pm
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Lotusblossom, That is awe-inspiring. Your story gives everyone with metastatic cancer hope and encouragement. I wish you many more years in remission or NED! Have a wonderful 50th birthday - celebrate BIG! Lisa ------------- Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED. |
Posted By: kiwikid
Date Posted: Feb 15 2014 at 3:36am
| wow fantastic news well done to you and thanks for sharing xxx I hope you have BIG plans to celebrate your 50th... |
Posted By: btstark2003
Date Posted: Feb 16 2014 at 8:53am
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LotusBlossom, I can't tell you how inspirational it is for me and my friends and family to be able to share that you are stable and have a good quality of life after nearly 5 years of living with TNBC mets! It was hard for me to have faith that this was possible before I learned of your example and several others on this Forum. I am now have stable lung mets after 16 weeks on MK-3475 (anti PD1 immunotherapy)! I feel exceptionally well! I have been living with TNBC mets for 2.5 years now. We are forging new ground for metastatic TNBC!. Yours in hope, Beth ------------- 2008 Stg1 TNBC, LX, FEC+T, rads 2010 2.5cm tumor BRCA-, BMX,CMF 2011 LN mets, Gem/Carbo, surgery, rads 2012 lung mets, PI3Ki/taxo 2013 anti-PD-1 2014/15 Xeloda, IMMU-132, eribulin Aug 2015 Keytruda |
Posted By: Adnerb
Date Posted: Feb 19 2014 at 9:57pm
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It's good to know that even with a triple negative metastasis it is possible to live past your "expiration date". We are all hoping to follow in your footsteps! Love, Brenda ------------- '05 Stg1 TNBC Lump, SNB, A/C, 33 rads '09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex. '13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole. '14 Abraxane in July '15 Abraxane in March |
Posted By: Tonya98
Date Posted: Feb 19 2014 at 11:53pm
That's fantastic. Congratulations!!  ------------- 2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin. 1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016 |
Posted By: Kitkat
Date Posted: Feb 20 2014 at 9:59pm
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WOW!! Thank You so much!!!! You give us all hope!!! I have had 8 taxol, carbo and herceptin, needing a break as feet and hands are really starting to bother me. I will talk to my dr. About this!!! Thank you so much for sharing and keep us all posted in the further. (((((Hugs))))) ------------- Dx 6-10 stage 1, grade 3, 1.2 cm tumor w microvascular invasion, CTx4. 25 rads w 7 boost. 1-13 stage 4 w 4-1 cm tumors to lungs. Xeloda 1500x 2 a day, ct scan 3-29, 50% shrinkage! Hopin and praying |