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mitymuffin View Drop Down
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    Posted: Nov 16 2010 at 8:36am

Has anyone without mets been prescribed Zometa? When I met with an oncologist at MSK she said "We are not to the point of recommending Zometa to everyone, but we are prescribing it for many patients. Talk with your local oncologist about it."  I did talk with my local Onc, with whom I've done the chemotherapy, and he said he was willing to prescribe it for my Osteopenia, but not my breast cancer. He did not feel it should be used for breast cancer except in the case of mets.  We left it hanging, as I know there can be significant side effects to Zometa and I wanted to give this some thought.  I've been on Fosomax (oral biophosphonate) for Osteopenia for years, and could transition to  the IV Zometa.  The MSK onc thought studies showed possible preventative benefits that made it worth consideration for Stage 2 patients. 

Have any of you discussed Zometa with your doctors? Or do you have information about this?

Diag. Triple neg. 4/23/10 Stage IIB, 3.2cm, grade 3, 1/11 lymph nodes, lumpectomy 4/23/10, AC + T + Avastin, clinical trial 5103, Rads, age 59
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 8:58am
Hi,

I'm in a clinical trial for bisphosphonates (See my signature).  You can google the trial and get more information.  There are 3 arms of the trial:  Boniva, Zometa and Clodronate.  I believe there are several women on this forum who are receiving Zometa.

Good luck to you.

Donna

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 9:01am
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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mitymuffin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mitymuffin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 9:11am
Donna, Thank you so much for this information.
Diag. Triple neg. 4/23/10 Stage IIB, 3.2cm, grade 3, 1/11 lymph nodes, lumpectomy 4/23/10, AC + T + Avastin, clinical trial 5103, Rads, age 59
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 10:42am
mity, please look back with the Search engine about some of the problems that have arisen from the Biophosphates. The Zometa is given as an infusion rather than at home with a pill like Boniva and has less problems, but it's important to understand the side effects and research fully...talk to your dentist and talk about the thigh fractures with your doctor.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 11:32am
Mity, I was on Zometa, immediately following treatment, with no mets for a year. My radialogist prescribed it and got insurance to pay for it by my having a dexscan and proving I had osteopenia.
 
It is supposed to help keep the cancer fromreturning in your bones, and has shown success for this off label use in TNBC.
 
I am not eligible for another dexascan until May 2011, insurance, so I am off Zometa until then.
 
Susie
dx 10/08,age 56,.75 cm. Stage1 Grade3,lumpectomy,SN neg..,AC 12/08-02/09,35rads,03/09-05/09,BRCA2+(E1415X),06/09,oophorectomy 10/09,
Zometa - IV/mo.,07/09-08/10, lumpectomy #2 10/20/10 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 12:07pm
i am on it for my osteopenia.. annualy infusion
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 3:26pm
If you look at the link Arlene posted in the News, Resources section from the New England Journal of Medicine, page 7, only 10% of TNBC mets to the bone.

http://library.constantcontact.com/doc203/1102824137592/doc/ZIg66QljIBILLpA9.pdf



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mitymuffin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 4:24pm
Thank you all very much. Donna, I did not know that statistic on TNBC and bone mets, that only 10% go into the bones. That puts the problems associated with Zometa in a new perspective. 
Diag. Triple neg. 4/23/10 Stage IIB, 3.2cm, grade 3, 1/11 lymph nodes, lumpectomy 4/23/10, AC + T + Avastin, clinical trial 5103, Rads, age 59
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 5:19pm
I didn't realize the statistics until I saw the article too.  It makes me wonder about the side effects from the bisphophonates and if they are truly worth it for triple negative.  I may ask my onc about it.   I know chemo takes its toll on our bones so maybe it helps reverse some of the bone loss from chemo.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2010 at 11:18pm
My oncologist has me on Zometa every 6 months for 3 years initially. He told me that although I didn't have osteopenia the research shows that Zometa use has shown reduction not only in mets to bone but also to organs (which is actually something scientists are still trying to understand). He said that because I am TNBC he wanted to do some Zometa as prevention. He had my dentist check me and send in a report before I began the infusions due to the risk of osteonecrosis of the jaw (which is not terribly high but it is a possible side effect which is in fact pretty serious) to make sure my teeth were fine.

Best,

Natalia
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2010 at 7:36am
I took Zometa by  IV once per month for a year. No side effects so far!
dx 10/08,age 56,.75 cm. Stage1 Grade3,lumpectomy,SN neg..,AC 12/08-02/09,35rads,03/09-05/09,BRCA2+(E1415X),06/09,oophorectomy 10/09,
Zometa - IV/mo.,07/09-08/10, lumpectomy #2 10/20/10 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2010 at 7:38am
Natalia,

I remember my onc mentioning part of the trial study is to see if it helps prevent mets to soft tissue organs also.  I was just surprised by the diagram of mets % for tn and bone mets being only 10%.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Morgan513 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2010 at 8:05am
Good morning--
I was surprised at the % mets to bones for TN too.  I have been trying to do more and more research to figure out the benefit of being on the trial.   This is very interesting.  I plan to speak to my onc when I see him in December to ask questions about this and get more nitty-gritty details.

I'm nervous about the side effects of the bisphosphonates including the long-term side effects.  I mean, we are taking very very high doses of this medication.  

Lorrie
Lorrie,DX 04/08, Stage 2A Medullary, N0, M0; Lumpectomy, Chemo (TC x4) and Radiation. Enrolled in Bisphosphonate Phase III study.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mitymuffin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2010 at 8:18am
Natalia, That is so interesting that your Onc said Zometa might help prevent mets to organs. I would love to see some studies on that, or anymore information. I've been on weekly Fosomax for years with no problems at all, and for one year I tried monthly Boniva which gave me some stomach problems. I know Zometa infusions can result in some serious side effects though, and I'm trying to figure out whether or not its worth the risk.
Diag. Triple neg. 4/23/10 Stage IIB, 3.2cm, grade 3, 1/11 lymph nodes, lumpectomy 4/23/10, AC + T + Avastin, clinical trial 5103, Rads, age 59
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2010 at 8:20am
Lorrie,

Please post back when you get more information.  This is one subject I've very interested in, especially the side effects and long term impact.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2010 at 2:53pm
Hi mitymuffin,

Here are a couple of links I found on the subject:

http://www.hcplive.com/publications/obtn/2008/November2008/zometa_breast_cancer

http://community.breastcancer.org/forum/69/topic/746308?page=2

So far I have had two infusions and no complications. Just a bit of pain in the bones after the first one but none with the second one.

My oncologist wants to be as proactive as possible and since we don't have much options after chemo and radiation, he thought we may give this a try in low doses for the first three years when the recurrence risk is higher. He also has me taking a bunch of supplements, suggested changes to my diet and made me increase exercise (I've always been active and thin and still he wants me doing cardio for at least 3 hours every week plus some type of strengthening exercise ....)

I hope this helps.

Best,

Natalia



Edited by nmunoz - Nov 17 2010 at 2:55pm
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mitymuffin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2010 at 3:52pm
Natalia, thank you, and I'm impressed with your doctor.
Diag. Triple neg. 4/23/10 Stage IIB, 3.2cm, grade 3, 1/11 lymph nodes, lumpectomy 4/23/10, AC + T + Avastin, clinical trial 5103, Rads, age 59
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2010 at 7:31pm
I am impressed also!!
dx 10/08,age 56,.75 cm. Stage1 Grade3,lumpectomy,SN neg..,AC 12/08-02/09,35rads,03/09-05/09,BRCA2+(E1415X),06/09,oophorectomy 10/09,
Zometa - IV/mo.,07/09-08/10, lumpectomy #2 10/20/10 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2010 at 3:56pm
Natalia,  what type of supplements does your onc have you on ?  Thank you 
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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