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09-22-2012, 12:25 PM
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#1
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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12 years since DX - stage IV - still NED - new problem
The great news is that after 10 years with stage IV status I am still NED. NED in body as well as my noggin.
The latest is that I have been suffering with a nerve impingement at L3 - about waist level. The pain goes down my left hip and all the way down the FRONT of my leg to my ankle. Spent 5 days in the hospital to get the pain under control and get some flexibility back in my hip. As well as start to walk a few steps with a walker.
This has been going on since before Labor Day. After something called a CT Myelogram the real disk problem was finally seen, which did not show well on the MRI, which confused the neuro team. Have had two injections in the area of the impingement and the second one has helped so I am reasonably mobile now, still with one of those 4-wheel walker models.
Have appointment with my neurosurgeon in 2 weeks, but am on the cancellation list to try to get in sooner. So, it looks like a little back surgery may be in my near future.
Moral is if we can get well enough to be very active, there are other tricks waiting down the line for our body to play on us. So, I join Elaine on the Back Problem list.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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09-22-2012, 02:41 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: 12 years since DX - stage IV - still NED - new problem
Oh Steph, when dealing with cancer we tend to forget the normal aging probs that set in too, thinking of you and sending good wishes !
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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09-22-2012, 04:51 PM
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#3
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: 12 years since DX - stage IV - still NED - new problem
Steph,
Feel better soon, and I'm glad you are "on" it, being proactive. My onco reminds me at times that in addition to what we bear, we have the usual calamities of aging and general health issues we would've had anyway. We are truly soldiers.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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09-22-2012, 05:07 PM
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#4
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: 12 years since DX - stage IV - still NED - new problem
Steph, Any surgery is not fun! I hope you get a cancelation soon. Gods blessings to you. I hope and pray all will go well for you!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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09-22-2012, 05:07 PM
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#5
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: 12 years since DX - stage IV - still NED - new problem
Yes, I have often thought that we should be immune from some of the more "commonplace" ailments due to our having cancer! I have also noticed that the every day things seem to be lining up. Just when I think I have one under control, the next one steps up to the plate! Just thanking God that I am alive to be having these problems.
I have recently been experiencing great hip pain. Xray shows arthritis in hip and spine. And so it goes....
Keep the faith
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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09-22-2012, 06:48 PM
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#6
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: 12 years since DX - stage IV - still NED - new problem
Steph,
I sooooooo hear you! While feeling privileged to be alive to live to grow old, I must say this growing old is a b*t#h! I am so sorry to hear you are gimping along, but hope you get relief very soon. Who was it who said that "growing old is not for the faint of heart"? Bette Davis?
Well whoever said it was spot on! Hang in there!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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09-22-2012, 07:06 PM
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#7
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: 12 years since DX - stage IV - still NED - new problem
Steph, so sorry to hear you are in pain and having to deal with back issues. Why am I not surprised that you are still going about...pain and all.
Sending you healing energy and hopes that you will be pain free soon.
Kindest Regards,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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09-22-2012, 07:52 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: 12 years since DX - stage IV - still NED - new problem
Hi Stephanie,
I am shocked and so sorry to hear this latest development. I am hoping that your treatment team we solve this problem and have you back on your feet ASAP.
Thinking of you!
Barbara H.
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09-22-2012, 09:52 PM
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#9
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: 12 years since DX - stage IV - still NED - new problem
Hi Steph, wishing you much success in your operation. It's wonderful that you are growing old (if you know what I mean), but gees, wouldn't it be great if it didn't bring all the other aches and pains!
Cheers Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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09-23-2012, 02:01 AM
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#10
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: 12 years since DX - stage IV - still NED - new problem
Poor Steph! I hope your Drs will find the solution to get rid of the pain and allow you to walk again. I hope you can escape an operation. I am so happy you are NED and I can't imagine you not being able to live fully and travel! Your stage 4 story and your fighting spirit always inspired me even when I was not stage 4.
I hope you will recover fast. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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09-23-2012, 05:12 AM
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#11
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: 12 years since DX - stage IV - still NED - new problem
Steph,
Oh No!! I'm glad you kept pushing till someone figured out your new ailment! Thank God you're your own advocate...practice makes perfect, I guess.
I've had disk trouble at c-4 and l-5 since my late 20's...arthritis and bulging disks. The pain, when those nerves get squashed, can be unbearable! But for you to be kept off your feet... Wow! That must be some kind of pain! You poor thing! I've had the steroid shots to the site (and they were wonderful, but temporary). I was able to avoid surgery (so far)...who knows what this body of mine will pull on me next! But, I've heard that the pain reduction after surgery is not only wonderful, but permanent. I just know your surgery and recovery will be as smooth as silk.
Hang in there, friend
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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09-23-2012, 05:39 AM
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#12
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: 12 years since DX - stage IV - still NED - new problem
Oh no - back pain is awful. I feel though that you are a very strong woman with all it takes to tackle this head on - you will prevail. Another challenge for you but wow girl - your back just doesn't know how we'll credentialed you are!
Sending love.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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09-23-2012, 09:34 AM
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#13
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: 12 years since DX - stage IV - still NED - new problem
Steph I am sorry to hear of your back pain. I hope you get into see the specialist sooner - a little trick I do is phone the office every morning at 9:00 a.m. and sweetly ask if there have been any cancellations that day, and tell the receptionist that you are available to come in pronto.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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09-23-2012, 09:43 AM
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#14
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: 12 years since DX - stage IV - still NED - new problem
Hi Steph
Yet another incident in the rich pageant of life. Glad to hear they have got the pain under control as its incredibly draining. I totally agree that after cancer We ALL should be immune from other health problems!
Keep us posted we care about you
Ellie
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09-23-2012, 09:50 AM
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#15
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: 12 years since DX - stage IV - still NED - new problem
Steph,
Sounded like you might have some sort of vertebrae degeneration issue. I had a scare several years ago when the right side of my neck was pinching me with sharp pain. After some x-ray/tests, I was told that the nerve tissue was exposed because of the bone (cervical vertebrae）degeneration.
I read that they can put something to seal the eroded area. I hope you will get a good 'repairment' and get rid of the pain soon.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 09-23-2012 at 09:52 AM..
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09-23-2012, 10:00 AM
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#16
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Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
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Re: 12 years since DX - stage IV - still NED - new problem
I am sending huge hugs and well wishes your way.
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.
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09-23-2012, 10:22 AM
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#17
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Senior Member
Join Date: Aug 2011
Posts: 85
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Re: 12 years since DX - stage IV - still NED - new problem
I am so sorry about your back. When one's back is in pain, it is the worst as it affects the whole being. It must have been severe pain for them to keep you five days in the hospital.
Truly hope that you find a resolution and I am sending you lots of ehugs (gently) and healing wishes. And a cancellation appointment! Soon.
__________________
dx 7/2011
open incisional biopsy w/o clear margins
IDC IIa Her2+++ ER-PR- Ki-67 72%
changed doctors
9/2011 Rt breast mast w/expander
Sentinel node neg
scans clear
10/2011 port in
10/2011 began TCH
2/2012 last TC. Herceptin through 10/2012
severe osteopenia
7/2012 prophylatic left mast, node clear
11/2012 anemic
12/2012 began MDAnderson clinical trial
1/2013 implants in, port out!
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09-23-2012, 11:14 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: 12 years since DX - stage IV - still NED - new problem
Bonjour Stephanie,
So sorry to hear about this.
I had what they said was either a pinched nerve or burnt nerve in my shoulder blade area from the radiation and the pain doc gave me Lyrica and it helped with the pain, I wonder if that would work for you until it's taken care of.
hugs and love
Sarah
Hope to see you over this way next year.
__________________
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09-23-2012, 11:51 AM
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#19
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 12 years since DX - stage IV - still NED - new problem
Thanks so much for all the well wishes, dear ladies!
It is a good thing I had the opportunity last September to climb to the top of the Mont St. Michel and walk up to the first level of the Eiffel Tower!
This pain I have is radiating from my back and is not really felt hard until my hip area and then down my whole left leg. So, oddly my back actually feels OK.
To put weight on my left foot was almost impossible.
Tomorrow I have an appointment for a nerve conduction test on my left leg. Then the neurosurgeon should have everything he needs to evaluate my case.
My hubby is a little put out at having to see such a parade of specialists, but that must be what is required by the insurance nowadays!
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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09-23-2012, 03:26 PM
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#20
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: 12 years since DX - stage IV - still NED - new problem
Oh Steph, I am so sorry you are having back problems. Hope that your surgery can be soon. I have a friend who said that the discomfort of the surgery wasn't nearly as severe as the pain he had before surgery. So here's hoping that you will soon feel much, much better.
Barb A.
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