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Old 11-02-2014, 11:13 AM   #1
jacqueline1102
Senior Member
 
Join Date: Apr 2012
Posts: 183
Stage IV and half marathon

Greetings all,

It's been awhile since I have posted. In October 2011 I was diagnosed with Stage IV Inflammatory Breast Cancer. The cancer had already metastasized to the liver. Much has happened in this time. Yesterday, I completed a half marathon. I may have walked it but I did it. My wonderful husband was right there walking with me. Those closest to me knew what a big deal this was. I tend not to tell any "new" people these days as I end up taking care of their reaction which these days I just lack the tolerance and patience for.

I know that in the course of this disease I have been "lucky" in the sense that my treatment thus far has worked. I wish the same for others here. I also wanted to thank you all for your kindness, encouragement, and knowledge. Much of what I have taken to my oncologist was information I obtained from you all; the news of Perjeta was on here before my treatment team even knew about the drug. There are so many intelligent and compassionate people here. Thank you all.

Take good care and peace to all,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 11-02-2014, 11:20 AM   #2
Becky
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Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Re: Stage IV and half marathon

How wonderful and so blessed to also be doing so well. Congratulations on your 13.1 and your NED status. You made my day.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 11-02-2014, 01:29 PM   #3
thinkpositive
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Join Date: May 2014
Location: San Diego
Posts: 411
Re: Stage IV and half marathon

Good for you in completing a half marathon and in doing so well with your treatments! I agree with you, there is a lot of really useful info and compassionate people on this sight. We are so lucky to have this as a resource. I hope you and your hubby complete many more marathons!
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 11-02-2014, 07:30 PM   #4
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,045
Re: Stage IV and half marathon

Congratulations! Like Becky, you just made my day, too! Here's to many more marathons!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 11-03-2014, 04:24 AM   #5
Bunty
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Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
Re: Stage IV and half marathon

How amazing Jackie - I'm very happy for you. I have a smile on my face as I write this, and I bet your still smiling, albeit possibly a bit foot sore! Here's to the next half marathon, or marathon....!!
Cheers 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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Old 11-03-2014, 05:26 AM   #6
Pray
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Join Date: Apr 2011
Location: Michigan
Posts: 1,173
Re: Stage IV and half marathon

Your Victorious! Thank you so much for posting
__________________
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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Old 11-03-2014, 03:37 PM   #7
SusanN
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Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
Re: Stage IV and half marathon

Talk about perseverance...WAY TO GO...SOOOO VERY PROUD OF YOU...thank you for sharing!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 11-03-2014, 06:49 PM   #8
jacqueline1102
Senior Member
 
Join Date: Apr 2012
Posts: 183
Re: Stage IV and half marathon

Thanks everyone for your kind words. I think we are all in this thing much like a marathon; it's not a sprint. Just keep putting one foot in front of the other.

Take care,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 11-16-2014, 01:11 PM   #9
Fighting fire
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Join Date: Feb 2014
Posts: 33
Re: Stage IV and half marathon

Thank you- I just registered for my first half marathon and reading this post gives me more encouragement to begin training! I initially decided to do it for an acquaintance who just lost her 5 year battle to the beast 2weeks ago, but now I'm doing it for ME and MY recovery. I was living my life so scared that every little pain was cancer rearing it's ugly head again, and I'm happy to say (today at least) I'm living in the moment. And happy that I received those drugs that got me a complete pathological response. My young boys are learning a great deal about how to be an overcomer and a fighter from their momma. I will train for this 13.1 mile journey as a survivor and will take all of my anger about this awful disease on my runs.
Congrats to you. You are very inspiring:-)
__________________
(Insert... I had my 2nd son at 26 weeks... for the first 15 months of his life I pumped around the clock for his nutrition. Since then-Sept 2012- my breasts went under a huge transformation. That led me to find my lump, I believe...)
Mid september 2013- found a lump in right breast
Had annual already scheduled for Oct. 2nd, where he said he wasn't impressed with the lump, but I urged him to order me a mammogram.
Oct. 14th- At the mammogram the technician said he should've ordered me a diagnostic one...
Oct. 28th- got a call to come back for diagnostic mammogram.
Oct. 30th- diagnostic mamm and ultrasound revealed something suspicious, and a cloudy lymph node. Couldn't get me in for biopsy for 2 weeks
Nov. 1st- called around to another hospital to see if I could be seen earlier... Nov. 4th biopsy scheduled.
Nov. 4th- ultrasound guided needle biopsy, they felt the lymph node looked fine & didn't biopsy.
Nov. 7th- DIAGNOSIS...
Nov. 11th- pathology reveals ER-/PR- HER2+++.
Nov. 13- Met with BS- discussed 85%+++ chance of beating this, neoadjuvant therapy will be best approach.
Nov 14-22-pre-chemo testing. All scans came back unremarkable except for breast MRI revealing something suspicious on left breast also.
Nov. 25th- Began TCHP every three weeks until March 10, 2014!!!
March 31st- began Herceptin only, radiologist says "congratulations, you've had a complete response to the chemo!" Very lucky.
April 15th- lumpectomy/SNB. Pathology reveals clear margins and negative nodes! Time to celebrate!
May 13- June 24- 28 radiation trmts to lumpectomy area, node biopsy area, and sub-clavicular node region, followed by 5 'boost' rads to lumpectomy area only.
Finished with radiation!!!
Herceptin only every 3 weeks until October.
October 27th last Herceptin!!!
November 17th port removed!!!!
P.S. My picture under my user name was taken July 11th after my first trim and color since starting my fight back in November!
July 2015- PET scan results- NED!!! Popping the champagne!
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Old 11-16-2014, 04:16 PM   #10
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,045
Re: Stage IV and half marathon

Fighting Fire, you go! I am not a runner (I had to run during my 25 years in the USAF ... now that I'm retired I will never do it again unless something's chasing me or the house is on fire! ) but I have been increasing my walk times and distances. It makes me feel good to do it and yes it sure does help the "staying in the moment" challenge.

You are an inspiration too! Let that anger go ... I am working on that same thing, too. Thanks for letting me know I am not alone in that.

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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