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12-04-2009, 11:21 AM
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#1
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Senior Member
Join Date: Jul 2006
Location: Newfoundland, Canada
Posts: 153
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Wondering
Im just curious. Has anyone ever had a small bone met and it was treated and stopped or is it inevitable that once it starts that you continue to have to deal with it.
__________________
Dawn
Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.
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12-04-2009, 12:02 PM
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#2
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Wondering
Dawn,
I had a met in my L4 and when I did Taxol and Herceptin it was gone. I have my PET on 12-18. The met has been gone since
4-6-08.
I am also taking Tamoxifen.
Amelia
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12-04-2009, 12:19 PM
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#3
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Senior Member
Join Date: Jul 2006
Location: Newfoundland, Canada
Posts: 153
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Re: Wondering
Thank you so much. I hope you never have to deal with it again. And Im going to hope that this spot will not return again. Finding it difficult dealing with it. Are you doing any other treatments?
dawn
__________________
Dawn
Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.
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12-04-2009, 12:52 PM
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#4
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Wondering
Dawn,
In February, I will have been on Herceptin for two years. I have also had the HER2 vaccine from the University of Washington.
My next big step is deciding whether to come off Herceptin. When I had my HER2 test in September, my level was 13.4. I hope it being at this level is related to me finishing the vaccine at the end of June.
I do take Vitamin D, magnesium, and calcium because of my met in my L4.
Amelia
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12-04-2009, 04:20 PM
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#5
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Senior Member
Join Date: Jul 2006
Location: Newfoundland, Canada
Posts: 153
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Re: Wondering
How much Vitamin D, Magnesium and Calcium do you take daily? What does the Her2 vaccine entail?
__________________
Dawn
Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.
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12-04-2009, 05:44 PM
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#6
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Wondering
Dawn,
I've been in my local bc support group for four years, and there's a woman there who has had bc in her bones for six years and she's taken only anti-ER+ medications for her advanced bc. I think she took Tamoxifen, but I'm not sure whether she's on Femara or Arimidex now.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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12-04-2009, 05:58 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Wondering
I have a friend who had bone mets at diagnosis, it went into remission (I think she may have had radiation to the area but never had any chemo) and although she continued to be treated with Zometa she has not had a recurrence.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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12-04-2009, 06:18 PM
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#8
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Senior Member
Join Date: Jul 2006
Location: Newfoundland, Canada
Posts: 153
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Re: Wondering
You know what, whatever the future holds for me. This site is amazing! I don't think I could even function if not for you guys. The support, encouragement and hope I've received in the last week has given me so much I dont think I could ever say Enough Thank Yous.
Dawn
__________________
Dawn
Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.
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12-04-2009, 11:23 PM
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#9
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Wondering
Dawn,
I just want you to know I am thinking of you and sending prayers your way. I remember thinking I wasn't going to see my son graduate from kindergarten but I did. And next March, I sign my daughter up for junior high. There is alot of hope out there.
I pray that you are able to sleep well tonight. I pray that tomorrow brings you renewed hope and strength.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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12-05-2009, 01:54 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Wondering
Dawn,
Have you asked about adding Zometa? It might be a good drug to have in your arsenal.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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12-06-2009, 11:28 PM
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#11
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Wondering
Dawn,
So glad you are already feeling better. Thank you for sharing your 'grateful heart'. Most of us 'love' this site because many, many kind-hearted veteran fighters and their supporters are here. We learn from each other and support each other.
There's a 'search' function you can access old postings by 'keywords' after you click on the 'Search' button on the top 'gold' bar. You can also search for individual members' postings by going to the 'Member list'.
__________________
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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12-07-2009, 11:00 AM
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#12
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Wondering
Dawn,
Sorry to be so late answering your post.
I have been taking two 2000IUs daily of vitamin D3. I take 630mg of calcium citrate with 500IUs of vitamin D3 twice a day.This consists of two pills. I take 400mg of magnesium three times a day.
I have learned from others on this board that the Vitamin D3 needs to be taken with some type of oil due to it being an oil soluable vitamin. Sometimes, I take a teaspoon of olive oil when I only eat raw vegetables to get the oil. So, I usually take these vitmains when I am eating. I wish I could find the magnesium in liquid form, but I have not been able to.
The magnesium makes me sleepy at night after I take the last pill of the day, which is a big help.
When I had my vitamin D3 checked in September, it was 42. I got it up to 42 in March and dropped back down to 1000 IUs daily and it dropped back down to 27.
Amelia
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12-07-2009, 06:20 PM
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#13
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Senior Member
Join Date: Jul 2006
Location: Newfoundland, Canada
Posts: 153
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Re: Wondering
Thankyou Amelia
__________________
Dawn
Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.
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