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01-07-2008, 08:47 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,747
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Zometa
I am trying to decide what to do next about my severe osteoporosis. I have been taking Fosomax for more than 10 years and my doc (not oncologist) says that I should stop. Also experiencing some stomach issues with the Fosomax. I also see a rheumotologist for my bones and am going to go see her soon and I am thinking that perhaps Zometa is a good choice for me. My Question to you all...how many of you are doing Zometa for bone health only, not because of mets. Side effects? Thanks!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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01-07-2008, 09:27 AM
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#2
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Suzan W
I don't know a thing about it but I think Becky and BrendaH
are on it solely for osteo reasons. There's a thread ( about
20 down from this one) about zometa.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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01-07-2008, 10:59 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I am using Zometa only for my bone health and not for mets. I got an infusion every 6 months during the first 2.5 years, now its about every 8 months. I had an ooph at 46 so I could take Arimidex (because I am only moderately ER+ but I am PR neg - and with Her2+, not a good combo for Tamoxifen working for me).
Since the ooph and Zometa - last 2 DEXAs - no change in neck and spine and improvement in hip (last one - but I started running again since then vs walking??)
It's easy and no stomach issues. I did feel flu-like symptoms the first few but not the one I had this summer. It used to be a 15 minute infusion but now they do it over 30 minutes as it causes less issues.
The biggest issue for me is having to go back into the infusion room (and have to explain to all the nurses that I am ok - just bad bones).
__________________
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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01-07-2008, 03:57 PM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Hi Suzan - Good you are keeping track of your bone density.
I took Zometa for about 3 years as a precaution against bone mets (since I was then stage IV, but NED), as well as to strengthen my bones.
As I understand things, not all of the drugs to take for bones actually help to REGROW the bones. My understanding of Zometa was that it would do that. When I had another Dexa last year it was clear that my bone density had increased markedly from when I had finished my chemos.
My dosing was every three weeks when I got the Herceptin. Then we slowed it to every 6 weeks, then every 12 weeks, and now I no longer take it after the last results.
There are other newer biphosphanates which will also regrow the bone, so ask about those as well.
__________________
"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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01-07-2008, 06:03 PM
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#5
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hi Suzan! Nicola had 4 mgs. of Zometa every 4 weeks for 2 years. She did have mild flu-like symtoms for a few days afterward. In bone scans, she always had "something" at T-8 and T-9, they were concerned about, but these areas never changed, so we thought maybe it was an old injury area. Sorry, we never tracked bone density or how effective the Zometa may have been, but with all the chemo she had, we never had any bone issues. Hope this helps a little. Peace to you. Love, Bill
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01-07-2008, 10:16 PM
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#6
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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I too am taking Zometa because of osteoporosis and not because of bone mets (thank God ). I have Medicare , and they only cover it for one time per year. Check with your insurance - it's expensive!! My onc is working on a way to get it covered for me for several treatments per year. So far, I have had no side effects at all (yeah).
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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01-08-2008, 07:17 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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I am taking Zometa annually for bone health only, no mets. The first infusion caused flu like symptoms that kept me in bed for a day. My second infusion will be at the beginning of next month.
__________________
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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