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04-24-2013, 03:33 PM
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#21
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: More Progression
Amanda, read Denise's post again, she is a wise woman with wise words, don't give up hope
Dawn. Xx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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04-24-2013, 08:15 PM
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#22
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Junior Member
Join Date: Sep 2012
Posts: 4
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Re: More Progression
Dear Amanda,So sorry to hear about your progression. I got bad news today that my cancer did not respond to TDM1. Progressed to bones (right hip and thoracic) and liver is enhanced along with chest wall. Husband, kids and myself are a mess  |
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04-25-2013, 04:45 PM
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#23
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: More Progression
You guys are wonderful! Here I am sitting in day oncology, hooked up and ready for my H, P and Abraxane. I'm cruising the net for wigs and Internet shopping.
I'm ok - it helps that I feel so good. I had a huge "dump" with my counselor on Wednesday and felt sooooo much lighter. My middle child is really struggling and when I picked her up from school on Wednesday she was pale, clammy and vomiting from a migraine. No school yesterday for ANZAC day and today she was worked up again tears and tummy knots - that's what I hate so much! It is not fair on my kids or my husband. I need to be here to love and nurture so I am focused on that.
I welcome all of your suggestions and surround myself with your hugs and love.
As I said to my oncologist - while I am breathing I have hope so 'on we go.'
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04-25-2013, 05:23 PM
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#24
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Senior Member
Join Date: Sep 2012
Posts: 29
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Re: More Progression
I am so sorry about the progression. I feel for you and understand what you are feeling. I was first diagnosed with HER 2+ cancer in 2003 when I was 38. My children were 2 and 4. I have prayed everyday that I get to raise my children. I pray that you will also. Keep the faith and try whatever they suggest. It may just be the one that works for you. Good luck and I will keep you in my prayers.
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04-25-2013, 08:41 PM
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#25
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: More Progression
Amanda, I found the best wig place to be Chiquel in Moonee Ponds. Nice bright salon, lots of different styles to try on. It is a hairdressing salon on one side, so you can get it trimmed to suit as well. They also sell wig stands shampoo, fake eyebrows, eyelashes, anything that you can think of! Helpful service too. I think I had my hair shaved and wig on by about week seen of Abraxane.
Hugs to you
Dawn xx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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04-26-2013, 12:18 AM
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#26
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: More Progression
Dear Amanda.
This sucks. It truly does. But over the 9 years I've travelled in cancer land, I've seen people bounce back time and again. One day they find a combo that works for them, and suddenly the whole picture changes. The fact that you are still healthy and active gives me hope that you will be able to last long enough to find that magic bullet.
Leaving my kids behind was my worst nightmare and you are living it. My GP knows a lot about alternative medicine, and he has been treating me with mistletoe shots. It is an anthroposofic treatment and you can google it. Here's one article: http://europepmc.org/abstract/MED/11...rnzq4d5wnprb.0
Iscador and viscum are good search words for this.
I wish I had more, as you deserve all the help you can get. Let me know if you want to know more.
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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05-02-2013, 12:05 PM
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#27
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: More Progression
What about AVASTIN? I've had very good luck with that, and I think that Genentech still has a patient access program?
I always say that I cannot reconcile who I see in the mirror everyday with a woman with advanced stage cancer. Shake my head. I, too, can "pass" for normal, healthy. Well, maybe not normal, but seemingly healthy. It's a blessing to count and my mantra for the past 6 years has been, "I don't know how this is going to be okay, but somehow it is going to be okay" Whatever it means, it seems to reassure me. Keep your eye on the kids and stay out of anxiety-ville as much as you can. So many woman have had good results with Abraxane. I'm sure you'll follow suit.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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05-04-2013, 08:20 PM
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#28
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: More Progression
Amanda, I'm heart sick so much sadness you are always in my prayers. Gods blessings to you and your beautiful family my friend,
Your friend, Nancy
__________________
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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05-08-2013, 05:01 AM
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#29
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: More Progression
Hey Girl!
Anything new?! I was thinking of you last night...around 7:30 my time...and you made me smile!  Here's what went down...
I went to my son's concert last night, and as I walked the 200 yards or so to get from my car to the auditorium...huffing and puffing like crazy...I had to stop and chuckle, thinking of you...lung mets aplenty...running, walking, playing footall with your 'baby'...
and here I am...supposedly with healthy lungs...suckin' wind like geezer on his last leg! Stupid, crazy cancer!
The concert was excellent! (his completely impartial mother stated modestly) My son did the voice-over for a patriotic medley...quotes of Lincoln's Gettysberg Address - the kid could do radio! And, of course, the real reason for the concert...he plays a mean French Horn too.
Fortunately, the show was also long enough that I had time to catch my breath before the looong, forced march back to my car. I could have been driven back to the car...but I'd have to have 'bumped' one of the 80-year-old grandparents, or the guy on crutches from the car to do it...so I walked...sloooooowly.
I hope you have a terrific day! And, thanks for the giggle!
Sending prayers and love...
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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05-08-2013, 06:11 AM
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#30
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: More Progression
Great post Denise, and I'm sure that will make Amanda smile - I did, but not at your expense, but at your spirit!!
Marie x
__________________
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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05-08-2013, 06:18 AM
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#31
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: More Progression
Hi Amanda, how are you going, have you had your second dose of Abraxane now? Feeling o.k.?
Thinking of you. Dawn xx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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05-08-2013, 08:04 PM
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#32
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: More Progression
Denise you have me chuckling!
I had my second Abraxane on Tuesday - so far so good. Just about to have a little kip but feeling ok.
I've had a difficult week as with the deaths of a couple of friends to BC - one who I was particularly close too and who was an amazing women and a fellow He2 gal. Also one of my children is having significant issues dealing with my disease and it is really tough going at the moment with her. We started seeing a psych yesterday with her so hope that helps but she is home again from school today 'feeling sick'. I have tried so hard to keep our life so normal but she is one intuitive little 8 year old who quite possibly is a very old soul I feel and desperately trying to teach me something!
Saw my oncologist on Tuesday and we continue to actively treat and she is attending ASCO and hoping to get some new ideas there for me.
Thanks for checking in on me gals. Xx
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05-08-2013, 08:10 PM
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#33
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: More Progression
It took me 7 chemos before I saw regression. It was gemzar (with perjeta) that did the trick. So yes, you can hang on to hope for a while longer.
My tumor burden shrunk my 50% and now I have a rads consult (tomorrow) to see if we can zap some more away.
Keep plugging. It's strange how some work and some don't.
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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05-08-2013, 08:14 PM
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#34
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: More Progression
Just wanted to let you know I was thinking of you today, and sending lots of light and positive energy your way.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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05-13-2013, 05:43 AM
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#35
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: More Progression
Thinking of you Amanda, I hope your daughter is doing ok.
Dawn xx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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05-14-2013, 06:21 AM
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#36
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: More Progression
Always pray for you and your family Amanda. Peace my friend.
__________________
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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05-14-2013, 06:55 AM
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#37
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: More Progression
Dear Amanda,
I, too, used to hope against hope that I'd be one of those "miracle" stories. Every time a scan has showed that not to be the case I have gotten scared and sad and discouraged.
But you are so young, and your kids are so young! My heart breaks for you and your family.
I only had a few doses of Abraxane, and at the time it wasn't clear that I did have lung mets, but the little "suspicious" nodules in my lungs responded. Perhaps if I had stayed on it longer it would have knocked them all out.
I liked Abraxane better than Taxol. It was great not to have to have steroids, and the side effects were milder.
We always want to protect those we love from suffering of all kinds, especially suffering that we caused. But that's really not possible is it? I mean, we can avoid deliberately hurting others, but life always includes bad luck, calamities of various kinds, illness, etc. You are doing a wonderful job of modeling for your kids how to respond to adversity. You are resilient, persistent, and proactive. You are sensitive to their needs, and you respond appropriately. You have already given them that. They already have that legacy from you.
We are not the Source of the love our children need, but one expression of it. In the end, everything will be okay. Once you've done all you possibly can, the rest is up to God.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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05-14-2013, 10:54 AM
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#38
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: More Progression
Amanda,
I'm sorry...somehow I missed the post about the passing of your friends. Just what you needed...
I'm so sorry for your pain and your loss. Beyond the emptiness their deaths leave...I'm sure their passing is an unwelcome reminder of your own struggles, and mortality. I know that's how the loss of loved ones affects me these days.
And, I'm even more saddened about your daughter and the pain she's in. My eldest is having a tough time right now too...but he's 15, not 8...so I don't think it's anywhere near as hard to watch as yours.
For my son, I think the way I look (not at all like the Mom he's used to seeing), and the fact that I'm totally exhausted all the time are really getting to him. He can't be near me without being reminded that I'm 'sick'. Of course, he's known I was sick for over 2 years now, but now he sees it every time he looks at me. And, he's old enough and smart enough to know that this is not like aynthing else I've had to face. For the first time...I think he's worried I might die on him...and it shows.
I applaud your decision to engage a therapist for your daughter. It can only help IMHO. Once again...I just want to say what a caring, involved, top-notch Mom I think you are! She's lucky to have you...and I agree...you're lucky to have her too. She very likely is trying to teach you something...though she's probably not even aware of what it is yet...or why. The ups ad downs of this cancer nightmare are hard enough on US...it just SUCKS that we can't shield our families from it...especially the little ones.
I'm looking forward to hearing about the innovative new plan you and your onc decide on. I'm just not willing to to believe that you're out of luck, any more than I am to think I am. We both have too much fight still left in us. I'm hoping Avastin is my magic bullet, and I'm keeping my fingers crossed that your magic bullet is coming back from ASCO with your doc!
Sending love and healing light to you and your precious daughter!
Denise
PS - as a teacher...with more than 25 years in a classroom...I can tell you with great authority that sometimes 'at home' is where kids need to be. I call them mental health holidays...and being with Mom is more important than ANYTHING that happens during any given school day. I also have very radical ideas about homework if you're ever interested! |
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05-14-2013, 05:33 PM
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#39
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: More Progression
Great post Denise
Go on, tell us about the homework!!......
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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05-14-2013, 09:45 PM
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#40
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: More Progression
Lol! We have a plan for a mental health day too - one a month and she gets to choose and of course if she is really not coping she is home and there have been a few. Homework and taking a backseat too and afterschool activities. It is lovely that she needs me - I want to be there for her but I have two other children who also need me and a me that needs me to help me heal - quite a juggling act but we are working through it. Cancer is tough on our family like all others. We continually learn, and just as I think we are coping fine, my hubby thinks it is all falling apart. Ups, downs and arounds but I am learning to enjoy roller coasters - never did but I'm trying! Hold on tight! It's a long ride - it may as well be fun. :-)
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