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07-26-2013, 08:57 PM
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#1
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Senior Member
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
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Anyone else dx with RA since ending treatment?
I was just diagnosed with RA, obviously quite concerned to now be told that my immune system is shot, other than that had been doing well (with the bc, nda) with exception of except the fatigue and joint pain of this, wondering if anyone else has been dx with RA after ending treatment?
Hugs to all,
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED
12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line
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07-27-2013, 06:32 AM
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#2
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Anyone else dx with RA since ending treatment?
Hi Cal Gal, what's RA?
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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07-27-2013, 07:01 AM
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#3
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Anyone else dx with RA since ending treatment?
__________________
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; 07-27-2013 at 08:21 PM..
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07-27-2013, 07:10 AM
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#4
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Anyone else dx with RA since ending treatment?
__________________
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
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07-27-2013, 07:12 AM
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#5
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Anyone else dx with RA since ending treatment?
'Possible association of gynecological cancer and Rheumatoid Arthritis':
http://www.ncbi.nlm.nih.gov/pubmed/22826971
__________________
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
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07-27-2013, 07:58 AM
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#6
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Senior Member
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
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Re: Anyone else dx with RA since ending treatment?
Hello Marie
Rheumatoid Arthritis, thanks Jackie for all the links.
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED
12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line
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07-29-2013, 08:35 AM
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#7
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Senior Member
Join Date: Mar 2012
Posts: 199
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Re: Anyone else dx with RA since ending treatment?
cal-gal - how do they test for RA? my joints are killing me more than usual these days. Im not sure if its because they are shutting down my ovaries using Lupron - it is way worse than before Lupron. My bones in my feet, hands, neck are so sore
how were you feeling before diagnosed?
__________________
diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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07-29-2013, 08:53 AM
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#8
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Anyone else dx with RA since ending treatment?
http://www.webmd.com/rheumatoid-arthritis/default.htm
Arthritis is a general term that means inflammation in a joint. Joint inflammation is characterized by redness, warmth, swelling, and pain within the joint.
Rheumatoid arthritis is a type of chronic arthritis that typically occurs in joints on both sides of the body (such as hands, wrists, or knees). This symmetry helps distinguish rheumatoid arthritis from other types of arthritis.
In addition to affecting the joints, rheumatoid arthritis may occasionally affect the skin, eyes, lungs, heart, blood, or nerves.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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07-30-2013, 05:56 PM
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#9
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Anyone else dx with RA since ending treatment?
Hi -
I did have some joint problems after my second go round and having to take Navelbine plus Taxol.
My neurologist put me through a battery of tests and came up with a diagnosis of " unspecified connective tissue disorder."
I was put on 5mg prednisone for two weeks to see if my swelling would improve. It did. I also was prescribed hydroxychlorquine (Plaquenil), which is widely used in patients for SLE or lupus, arthritis and various other inflammatory problems.
After a couple of years, my system became strong enough that I could cut down on the Plaquenil and not have the swelling of joints or connective tissues.
__________________
"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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08-02-2013, 11:43 AM
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#10
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Anyone else dx with RA since ending treatment?
one theory of how chemo works in breast cancer is by decreasing the number of T regulatory cells so that the cancer cannot evade the immune system so well (there are a lot of more gentle ways to do the same thing, so I would hope they would be able to use less and less chemo if this turns out to be one of the main things chemo does besides causing early menopause)
A side effect of decreasing T regulatory cells is increasing the chances of autoimmune diseases such as RA, lupus, etc
THis may all be involved when they work things out.
Could you please add this to the thread...please list side effects of herceptin, real or imagined (of course it may not be the herceptin, which is why it is best to list all the drug you were on). May help researchers in the future tie all of this together...
Thanks!
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08-02-2013, 02:22 PM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Anyone else dx with RA since ending treatment?
Just wanted to add that I remained on Herceptin on the three weekly dose for several more years during which my joint problems slowly resolved.
Thus, in my case, I do not think the joint problems were caused by the Herceptin. Being hormone negative, I did not take Tamox or any other hormone suppressant. Only the hard chemos.
__________________
"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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