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Old 01-30-2012, 06:22 PM   #1
caya
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Aclasta (Reclast) infusion tomorrow

Since I now have osteoporosis (thanks Femara!) my onc. sent me to an endocronolgist to see about getting a zolendric acid infusion. In my province they use Aclasta (5 mg. of zolendric acid) for this purpose. The dr. says I will have the infusion every 12 - 18 months.

So my first infusion is tomorrow afternoon. I'm having it infused by a nurse at a hospital, they told me to drink a lot today, tomorrow, and the next day. The dr. also advised me to take one Tylenol tonight, 3 tomorrow, and 1 -2 the day afterwards to hopefully ward off any flu-like symptoms. A friend is taking me down to the hospital so I won't have to drive home in case I don't feel well.

Any words of wisdom from anyone who has had a Zometa/Reclast/Aclasta infusion?

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 01-31-2012, 05:17 AM   #2
Ellie F
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Re: Aclasta (Reclast) infusion tomorrow

Thanks for posting this Caya. Yesterday my scan results indicated I might have a degree of osteoporosis and I am referred for a dexa scan. My onc has stated that if the results are positive he will definitely treat me. Not sure what with so very interested to get any information.
As I have very little dairy in my diet I am going to try to improve my intake of calcium rich foods and vit d3 to try to help the situation. As there is no history of osteoporosis in my family I and I am not oestrogen + I can only assume it is a side effect of chemo and ongoing herceptin.
Any info would be appreciated.
Ellie
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Old 01-31-2012, 06:09 AM   #3
Pray
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Re: Aclasta (Reclast) infusion tomorrow

hi Ellie, I started taking Vit. D3 gel caps 1000 twice a day and with in 3 months my D level went from 11 to 25. My Dr. was as pleased as I was! Good luck ladies!
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Old 01-31-2012, 02:39 PM   #4
Delaney
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Red face Re: Aclasta (Reclast) infusion tomorrow

My Doctor advised me to take calcium with the D3 and prescribed Calcichew D3 Forte. Two chewable tablets daily. Very easy to take, lemony flavour.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 01-31-2012, 04:56 PM   #5
Becky
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Re: Aclasta (Reclast) infusion tomorrow

I was on Zometa (same drug different name) and I did not take Tylenol (a great suggestion by your doctor) and I did get a fever the next day - I felt like I was getting the flu. I felt funky that next day - tired and weak and feverish. But the day after that, I was completely fine. So, with the Tylenol, who knows but I suppose if you plan on feeling funky and don't, all the better. The funkiness doesn't last though.
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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 01-31-2012, 05:39 PM   #6
caya
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Re: Aclasta (Reclast) infusion tomorrow

I had the Aclasta infusion today - the whole deal took about 45 minutes.

I feel tired, a bit of a headache, nothing major. I'm drinking lots of water, and following the dr.'s Tylenol schedule.

I take 4000 U of Vitamin D3/day, as well as 1500 mg. calcium (along with various other things). Vitmain D3 levels up here in Canada must be measured differently, as mine was 101 - the endocronlogist said you want to be between 75 and 200.

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 01-31-2012, 06:15 PM   #7
Joan M
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Re: Aclasta (Reclast) infusion tomorrow

Caya,

Glad to hear that nothing major occurred and your doctor is staying on top of the osteoporosis.

Joan
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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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Old 01-31-2012, 09:57 PM   #8
Pray
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Re: Aclasta (Reclast) infusion tomorrow

Hi Caya,On the Vit. D. My dr. said anything over 30 is good. I was showing how much it can rise in a few short months. 11 is not good. Gods blessings to you.
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Old 02-02-2012, 07:14 AM   #9
caya
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Re: Aclasta (Reclast) infusion tomorrow

Had a terrible second day - woke up at 6 a.m. with the flu-like symptoms - chills, nausea, terrible bone pain, weakness. I slept most of the day, my girls had to come in at 5:00 p.m. to see if I was still alive -!

Feeling better today, but man, yesterday was a doozie!!

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 02-02-2012, 10:34 AM   #10
tricia keegan
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Re: Aclasta (Reclast) infusion tomorrow

Hi Caya I'm late coming in here but have zometa once yearly for osteopenia thanks to Arimidex, like you I had a bad second day too but was fine after that!
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 02-02-2012, 01:31 PM   #11
Ellie F
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Re: Aclasta (Reclast) infusion tomorrow

Do you progress onto zometa after trying other treatments or do they give it you from the start if you get diagnosed with osteopenia/osteoporosis?
Can supps of calcium and vit D3 improve things on their own?
Got appt for dexa scan in 3 weeks so grateful for any info.
Ellie
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Old 02-05-2012, 03:09 PM   #12
tricia keegan
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Re: Aclasta (Reclast) infusion tomorrow

Ellie i was first tried on Fosamax which upset my tummy so much I had to stop it, you take it once a week before tea/coffee or food and can't eat or lie down for almost an hour after it. My Onc suggested the zometa when I had issue's with this med and it suits me better, good luck with the Dexa and hopefully your bones are fine for now!!!

P.S Sorry I meant to say calcium and vitamins cant help if you pregress to Osteopenia/osteoporosis!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 02-05-2012, 03:12 PM   #13
CoolBreeze
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Re: Aclasta (Reclast) infusion tomorrow

I admit I got pretty achy and fluish after my first Zometa infusion. I never had another response though, no matter how long between infusions. (Now I'm up to monthly). Your first will be the worst, and you got great advice from the nurses. Just plan to take it easy the next day and then you'll be fine.
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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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