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Topic: Zometa...how long for stage 4 gals?

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Jul 29, 2012 12:59 PM

Smiley2 wrote:

How long do we stay on this drug?  They don't have studies past 5 years correct?  And the longer you are on it the more potential for fracture?  Considering it stays in our system for so long, I am wondering if we could get take a break from it for awhile? There are some stage 4 gals I know with bone mets that aren't even on this drug? 

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Posts 1 - 26 (26 total)

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Jul 29, 2012 01:50 PM GrandHillMom wrote:

My doctor just discontinued my Zometa after 24 months. I am currently doing carbo/taxol for a new ovarian cancer plus Aromasin for my bone mets, so I think it might just be a break.

3/2006 (age 47) Rt: IDC, DCS & IDC, ER+PR+HER2- Stage IIIB, Lt: IDC Stag IIA ER+PR-HER2-; AC, Taxol, Bilateral Mast., bilateral radiation, Tamoxifen and megace. 3/2010, bone mets to skull, spine, ribs, pelvis and femurs, Aromasin and Zometa
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Jul 29, 2012 01:58 PM ibcmets wrote:

Smiley2,

That has been my concern lately.  I've been on Zometa for 3 years now, along with Femara.  It has truly kept me stable for the last 3 or 4 scans.  Even my last one in July this month was good, but I'm having more joint and bone pain and just got arthritis in both knees.  I asked my onc to extend the zometa treatments further out, once every 3 months.  I will see him Monday, so I'll see if they will do this. 

Terri

ibc,stage IV bone mets, ER/PR+, Her2-, chemo, BMX
Dx 6/6/2009, IBC, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Jul 29, 2012 04:57 PM JeninMichigan wrote:

I am pretty interested in this thread too.  I have been on Aredia (the equiv of Zometa) for a little over 4 years.   This past January I have talked my oncologist to space it out to once every six months.   My bone mets have been quiet for 4 years now.  I see her again in September and this is one of the big questions.  

Jennifer

Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
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Jul 29, 2012 05:27 PM Angelfalls wrote:

I have mets in my sternum and just recently started getting Zometa once a month. The plan is for me to have a course of only 6 and not to continue with this drug long term.

Dx 3/2003, IDC, 6cm+, Stage IIIa, Grade 3, ER+/PR+, HER2-Dx 9/15/2006, 5cm, Stage IIIcDx 10/5/2011, Stage IV, metsSurgery 04/01/2003 Mastectomy (Right); Lymph Node Removal (Right); Reconstruction: Breast implants (permanent), Latissimus Dorsi flap (Right)Chemotherapy 04/30/2003 Cytoxan, Ellence, fluorouracil, TaxotereRadiation Therapy 11/15/2003 ExternalHormonal Therapy 01/05/2004 TamoxifenRadiation Therapy 11/01/2006 ExternalSurgery 01/31/2007 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2007 ArimidexChemotherapy 01/05/2012 XelodaChemotherapy 03/20/2012 Taxol
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Jul 29, 2012 06:25 PM Fitztwins wrote:

I have been on it 4 years and broke my foot last year on the 4th of july, just stepping funny on it.

Lesser of two evils??

Enjoy Every Sandwich.
Dx 12/12/2004, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2+
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Jul 29, 2012 07:39 PM blondiex46 wrote:

good question, been on it for about a year and hate it....

Original 8/96 - 1cm, chemo, rads.recurr..10/09..Mets to lungs, lymph nodes, bones in neck , ribs & liver, Femera then Falsodex, zometa & Xeloda, now Zometa and Gemzar!!
Dx 10/15/2009, 3cm, Stage IV, ER+/PR-, HER2-
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Jul 29, 2012 08:26 PM Jill45 wrote:

I was on Zometa monthly for the first 18 months then switch to bi-monthly. I ended up switching to Xgeva about 15 months ago which once again was monthly. Just switched to quarterly Xgeva shots since doctor was concerned that monthly use could make the bones to brittle.

Dx 5/19/2009, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jul 29, 2012 09:22 PM exbrnxgrl wrote:

Like Jennifer, I am on Aredia, monthly. My first mo said I would be on it for 22 months but I switched MO's and my current one says 12 months because of fracture and ONJ issues. I am currently NED and not sure if she intends to put me on anything after I'm done with Aredia (still on an AI of course). Will discuss this at my next appointment.
Caryn

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to left hip
Dx 7/8/2011, IDC, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2-
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Jul 29, 2012 10:13 PM Smiley2 wrote:

Wow! i have been on Zometa for 3 1/2 years monthly.  Terri. like you I am now having pain in both of my knees!  I have brought this issue up a couple of times to my onc but he usually talks in circles (hence search for new onc).  But his nurse said that she knew of a patient that took it monthly for 18 years.  There are definitely confirmed studies of fractures that are specifically caused by this drug b/c they are "odd" fractures that you wouldn't normally get.  I think my orthopedic oncologsit told me about this.  He doesn't keep his patients on this longer than 2 years but he see's a lot of cancer other than breast cancer. 

I am anxious to hear from those of you that have upcoming appts with your onc's as to what they have to say about this issue!  I wonder what the big cancer centers like Mayo or Dana Farber say?  ANyone go there?

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Jul 31, 2012 05:49 PM chefmiche wrote:

I have been getting Zometa monthly since Oct last year and on my latest scan showed I have arthritis all over my body, but am stable and NED.  It rarely makes me feel flu-like if I drink a ton of water, but do have bone hip pain I wonder if the Zometa causes this pain.  Since I don't have active tumors any longer in my hips/spine and skull I shouldn't feel pain any more but I have been on pain patch since last Sept.  I've tried to wein off but find the pain is still there...do any of you experience pain from Zometa?  In March 2012 I had surgery in my right hip where he went in removed the tumor and filled the hole with cement but my surgeon doesn't think I should be experiencing pain from it now.  I just can't understand where my pain is coming from and would love to get off the Fentanyl patch.

Dx 9/2011, Stage IV, mets, ER+/PR-, HER2-Chemotherapy 07/10/2007 Adriamycin, Cytoxan, TaxolSurgery 11/23/2007 Mastectomy (Both)Radiation Therapy 01/15/2008 ExternalSurgery 04/15/2008 Reconstruction: DIEP flap, Nipple reconstruction (Both)Hormonal Therapy 09/28/2011 AromasinRadiation Therapy 10/05/2011 ExternalSurgery 12/09/2011 Prophylactic Ovary Removal (Both)
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Jul 31, 2012 07:59 PM cheryl1946 wrote:

I asked my onc that question last month,and she said protocol right now is 2 yrs. So,I have another 14 months.

Dx 5/11/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-Hormonal Therapy 07/10/2011 Femara
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Jul 31, 2012 08:40 PM 4myangels wrote:

Is this the same for Xgeva?

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Jul 31, 2012 11:18 PM kayrnic wrote:

My onc gave it to me every month for three months right after bone met diagnosis and now he has switched me to a dose every 3 months.

Kay
Dx 11/14/2001, IDC, 2cm, Stage IIa, Grade 2, 0/9 nodes, ER+/PR+, HER2-Dx 3/9/2012, IDC, Stage IV, mets, ER+/PR+, HER2-Surgery 11/14/2001 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 11/30/2001 Adriamycin, CytoxanRadiation Therapy 03/14/2002 ExternalHormonal Therapy 05/07/2002 TamoxifenHormonal Therapy 04/06/2012 TamoxifenRadiation Therapy 04/11/2012 ExternalSurgery 05/16/2012 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Both); Prophylactic Mastectomy (Right); Reconstruction: TRAM flap (Both)
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Jul 31, 2012 11:33 PM ibcmets wrote:

Smiley and others,

My onc agreed to have me switched to once every 3months this week.  When I had bad pain from arthritis, I would feel a lot of pain after the zometa infusions which I had not had the previous 3 years.  I've researched a bit and find that some on prolonged use of Zometa are having more brittle bones.  It certainly has kept me stable the first 3 years and I don't want to totally eliminate it.  Emotionally and physically, I think it was too much for me.

He's going to check my CTC counts more regularly &  may switch my PET scans to CT scans to see if there is any difference.

Terri

ibc,stage IV bone mets, ER/PR+, Her2-, chemo, BMX
Dx 6/6/2009, IBC, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Jul 31, 2012 11:41 PM Marybe wrote:

I have been on a biophosphonate for 14 years, ever since I was diagnosed with bone mets.  ....started out with aredia, then went to zometa when it was approved and for the past 1 1/2 yrs have been getting Xgeva....onco switched me to that because it is just a simple monthly shot.  I have never really thought about going off of it since I have not had any problems with it. 

4myangels,   It does the same thing, just is a lot more simple to get since the others were an IV drip. 

Marybe Be you own advocate and keep on your toes. I went from no stage (1990) to Stage lV while under an onco's supervision.
Dx 4/1998, IDC, Stage IV, 0/19 nodes, mets, ER+/PR+
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Jul 31, 2012 11:55 PM Anne45 wrote:

I received zometa for 2 years every month.  Now I receive it every 3 months.

Dx 7/29/2009, IDC, Stage IV, mets, ER+/PR+, HER2-
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Aug 1, 2012 12:13 AM exbrnxgrl wrote:

Marybe,
Impressive! Seems you are long past the point of worrying about problems from bisphosphonates. Long may you run. Caryn

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to left hip
Dx 7/8/2011, IDC, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2-
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Aug 10, 2012 03:40 AM sweetangel wrote:

I was on zometa for only about a year and I had to stop taking it, I was diagnosed with osteonecrosis, it really went bad when the dead bone emerged at the roof of my mouth....it started as a huge lump then the dead bone showed up...two weeks ago I sneezed so hard that the bones fell off.... So embarrassing as I was on the train when that happened. Now all is left is a huge hole is my palette....which gives lot of pain whatever I eat or drink goes up and can see it running through my nose....I hate how all these treatment can give side effects but have no choice but to go through it.....

I feel like I'm fighting a battle when I didn't start a war...
Dx 2/21/2011, IDC, <1cm, Stage IV, Grade 1, mets, ER+/PR+, HER2-
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Aug 12, 2012 06:48 PM Smiley2 wrote:

So would you guys think of this drug as simply a "bone strengthener" and not as an active drug against cancer?  I thought at one time my doctor said it "encapsulates the tumor and helps it from not spreading further".  But if this is just a bone strengthener drug and other people take this and don't have cancer....then is this drug really doing anything as time goes on other than leaving us vulnerable to fractures and side effects? 

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Aug 12, 2012 07:30 PM ridergirl wrote:

I get my first pamidronate infusion 08/29 and am looking into getting on zometa instead. Anyone else done this? I thought the zometa was to help our bones, but sounds like it causes some of you a lot of problems/pain. Can someone explain to me what i'm missing here?

Dx 6/25/2012, 6cm+, mets, ER+/PR+Hormonal Therapy 07/09/2012 Tamoxifen
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Aug 12, 2012 08:20 PM JillThut wrote:

zometa....My limited understanding of it is that yes, it is supposed to be a bone strengthener but prolonged use could make your bones more susceptible to breakage? I have been on it since November 09..first monthly...then every six weeks...just changed to every 8 since bone scans have been stable for a while.

bone, liver and brain mets Jill
Dx 10/6/2009, Stage IV, mets
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Aug 12, 2012 10:18 PM llanabeth wrote:

I was on Zometa for 2.5 yrs and then moved on to xgeva at my request.  I just hated the IV ordeal every month.

Tamara
Dx 2/18/2010, ILC, 2cm, Stage IV, ER+/PR+, HER2-
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Aug 14, 2012 08:11 PM Cafelovr wrote:

I've been on Zometa for almost three years. I started once every three weeks, but now I have it once every 12 weeks. Onc told me I'd be on it for life.

I have extensive joint pain in my back, hips, knees, ankles, and wrists. I always thought it was the Tamoxifen. Hmmmmmm?

Linda J
Dx 10/19/2009, IDC, 6cm+, Stage IV, Grade 3, 0/2 nodes, mets, ER+/PR-, HER2+
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Aug 14, 2012 11:52 PM sandilee wrote:

Smiley2- My onc believes it does more than just strenghten our bones, but actually makes the bones a less hospitable place for the cancer to thrive, and slows down the cancer growth. I believe there have been studies that support this idea, although I don't know if there is any definitive proof though double blind trials and all.

 I've been on Xgeva for a year, and as far as I know, I'll stay on it for another year. I don't think too much beyond that, as I just hope I'm still feeling as well then as I do now.

Dx 11/2007, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, mets, ER+/PR-, HER2-
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Aug 15, 2012 04:23 AM Heidihill wrote:

I took a break from Zometa for 2.5 years. Had it again recently and will go for another 2 years before the next one. There are studies (Gnant, for one) that show that in a low-estrogen environment, overall survival with Zometa is greater, pointing to an anti-tumor effect for postmenopausal women. But my theory is that increasing bone density through exercise is a better idea overall, so I am not a compliant patient in this regard. I felt the combination of Zometa and Femara was too much for my joints.

Dx 8/2007, IDC, 2cm, Stage IV, 2/19 nodes, mets, ER+/PR+, HER2-Surgery Mastectomy (Left)Chemotherapy Adriamycin, Cytoxan, TaxotereRadiation Therapy ExternalHormonal Therapy Femara
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Aug 15, 2012 08:13 PM Redroan wrote:

My ONC told me I would be on it for 1 year! Along with my arimidex forever! We will see what he says after my year is up!

Dx 1/11/2012, Stage IV, Grade 2, ER+, HER2-Surgery 08/23/1991 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 08/30/1991 Cytoxan, fluorouracil, methotrexateHormonal Therapy 01/30/2012 Arimidex