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Topic: zometa

Forum: Bone Health and Bone Loss —

Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Apr 6, 2014 06:21PM

eminnewport wrote:

I'm looking for some feedback from anyone who has used Zometa.  I have some bone density loss from my chemo treatments that finished in Sept. 2012 and my doctor sent me for Zometa IV on Friday.  It's been a horrible weekend, very reminiscent of chemo, I was very nauseous, dizzy, my bones and muscles ache so much I can barely get out of bed and the headaches are so bad and nothing is working.  I'm embarrassed to admit I didn't read too much about it before I got the infusion.  After reading some articles today it sound like it's used for breast cancer which has metastasized, which is not my case.  I'm wondering if other women have been prescribed this for bone loss and what your experience has been and also if you have had bone loss after chemo what are some of the other courses of treatment women have had?  Although I'm still feeling physically ill from the treatment I'm also experiencing some flash backs to chemo and let's face it none of us wants to relive those days.  Thank you so much for any information or recommendations!

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Apr 6, 2014 06:53PM Moderators wrote:

eminnewport, we're sorry you've had such a tough time with your Zometa infusion! Until you hear from other members about their experiences, you can read more about Zometa and its side effects at the link to the main Breastcancer.org site.

There's also more information about bisphosphonates in general in the section Bisphosphonates for Osteoporosis and Bone Protection.

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Apr 6, 2014 09:28PM doxie wrote:

After my infusion of zometa I had intense bone pain in my ankle and up the shin.  It went away quickly.  I was getting zometa because of osteopenia and a bad family history of osteoporosis.  Nothing to do with bone met.  I can't remember any other issues because the bone pain was so intense.  

Dx 8/2011, IDC, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 9/1/2011 Lumpectomy: Right Hormonal Therapy Aromasin (exemestane) Radiation Therapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 6, 2014 09:39PM Obxflygirl1 wrote:

I had an infusion about a month ago.  I really haven't had any side effects.  I think I've been real lucky with it so far and hope it continues.  Sorry you are having such a bad reaction.  Hope you feel better soon.

Exchange Jan. 2013; CV Flaps Nips....April. 2013.. Vinnie....Sept. 2013 Dx 8/14/2012, IDC, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/20/2012 Mastectomy: Left, Right Hormonal Therapy 10/9/2012 Aromasin (exemestane)
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Apr 6, 2014 09:43PM Momof3GreatKids wrote:

I am getting Zometa once every 6 months for three years to help keep bone mets away. It is a new study that my MO told me about in January and I had my first infusion in February. I was told that I would have flu like symptoms and that was exactly what happened. I had the infusion on a Friday and woke up Saturday feeling awful. I regretted having the infusion, but after sleeping all day Saturday I was feeling better Sunday, but took it easy and slept off and on. I went back to work Monday feeling much better. I have decided that I will have them again since it was only a day or two, but I will make sure that I get them on a Friday so that I can sleep all weekend. Please let me know if you have any other questions. 

Dx 3/2/2012, DCIS/IDC, Right, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/12/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/6/2012 AC + T (Taxol) Radiation Therapy 10/16/2012 Breast, Lymph nodes Hormonal Therapy 10/23/2012 Surgery 1/8/2013 Prophylactic ovary removal Hormonal Therapy 1/15/2013 Femara (letrozole) Hormonal Therapy 1/29/2014 Arimidex (anastrozole) Hormonal Therapy 11/13/2014 Aromasin (exemestane)
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Apr 6, 2014 09:56PM Holeinone wrote:

eminnewport, 

I am trying to get Zometa, my MO is stalling. I think it is well worth the SE, thanks for starting this thread.

Spinal mets Surgery 7/22/2013 Lumpectomy: Left Chemotherapy 8/22/2013 AC + T (Taxol) Radiation Therapy 12/23/2013 Breast, Lymph nodes Dx 3/3/2016, ILC, Left, 1cm, Stage IV, metastasized to liver, Grade 2, 6/7 nodes, ER+/PR+, HER2-
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Apr 7, 2014 04:08AM Heidihill wrote:

Drink lots of water before, during and after the drip. This helps.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 7, 2014 02:31PM eminnewport wrote:

Thanks for your quick responses everyone, it was so helpful!  To "momof3greatkids" you described my weekend, fortunately I am feeling much better today!  Do those of you who have had the treatment think that the benefits out weigh the risks?  

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Apr 7, 2014 05:11PM Dianarose wrote:

I had my first infusion Febryary 28th. My bone pain was quite intense. It started from my ankles on up. I also felt like crap for awhile. I will be getting it every 6 months.

6/10/13 mets to ovary now. Now mets. To peritoneal stage IV Dx 3/22/2012, ILC, Both breasts, 1cm, Stage IV, metastasized to bone/other, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 5/30/2012 CMF Radiation Therapy 12/2/2012 3DCRT: Breast, Lymph nodes Hormonal Therapy 8/9/2013 Aromasin (exemestane) Targeted Therapy
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Apr 7, 2014 05:28PM Momof3GreatKids wrote:

The day after I had the first infusion I would have said that the benefits did not out way the way I felt, but now that I know it only lasts a day or two I would say that the benefits will out way the side effects. My MO also told me that the SEs are usually worse the first infusion so I am hopeful that  this is truu. I will let you know in August when I have my next infusion. 

Hugs to everyone!

Dx 3/2/2012, DCIS/IDC, Right, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/12/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/6/2012 AC + T (Taxol) Radiation Therapy 10/16/2012 Breast, Lymph nodes Hormonal Therapy 10/23/2012 Surgery 1/8/2013 Prophylactic ovary removal Hormonal Therapy 1/15/2013 Femara (letrozole) Hormonal Therapy 1/29/2014 Arimidex (anastrozole) Hormonal Therapy 11/13/2014 Aromasin (exemestane)
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Apr 7, 2014 07:09PM Dianarose wrote:

momof3-my doctor said she never heard anyone say it was less painful the second time. I will be watching for your post in August. I get my second one in September. 

6/10/13 mets to ovary now. Now mets. To peritoneal stage IV Dx 3/22/2012, ILC, Both breasts, 1cm, Stage IV, metastasized to bone/other, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 5/30/2012 CMF Radiation Therapy 12/2/2012 3DCRT: Breast, Lymph nodes Hormonal Therapy 8/9/2013 Aromasin (exemestane) Targeted Therapy
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Apr 8, 2014 08:57AM eminnewport wrote:

Thanks "momof3" I hope your second round in August is easier, I'll be checking in with you.  Thank you everyone for the great feedback and support!

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Apr 8, 2014 09:13AM MRSROCKYTOP55 wrote:

I am having Zometa monthly and only the first infusion had major side effects.  After that not bad at all.  I pray it goes the same for you.  Blessings, Kathy

Dx 11/17/2008, ILC, 1cm, Stage IIB, Grade 3, 1/6 nodes, ER-/PR-, HER2+ Dx 9/24/2013, ILC, 1cm, Stage IV, Grade 3, 1/6 nodes, mets, ER-/PR-, HER2+ Dx ILC, 1cm, Stage IV, Grade 3, 1/6 nodes, mets, ER-/PR-, HER2+
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Apr 8, 2014 08:20PM eminnewport wrote:

Thanks Kathy that sounds promising!

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Apr 9, 2014 11:51PM TeamKim wrote:

Thanks for starting this thread.  I have my first Zometa infusion tomorrow -- and I was looking for some accounts of the side effects.  I am getting the drug for the same reasons as Doxie -- osteopenia and family history of osteoporosis.  Tamoxifen is hard on bones, so this is to counteract that and to replace the Actonel that I was taking before BC.  Thanks for the tip on the water, Heidi.  I will start drinking like crazy.  I underestimated my anxiety level with returning to the chemo chair for an infusion....  Feeling a lot of trepidation.

If you are going through Hell, keep going." -- Winston Churchill Dx 6/28/2013, DCIS, 1cm, Stage 0, Grade 1, 0/2 nodes, ER+/PR+ Dx 7/19/2013, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 7/29/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 10/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 10/30/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 11/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 12/11/2013 Cytoxan (cyclophosphamide) Hormonal Therapy 1/19/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/19/2014 3DCRT: Breast
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Apr 10, 2014 02:47AM Momof3GreatKids wrote:

Teamkim - I was very anxious about returning to the chemo chair also, but when I got there all I kept thinking was how much better off I seemed than everyone else in there getting chemo. I felt like the nurses should not be waiting their time on me, but should be helping all the rest of the patients in there. It also showed me how much better I have been lately also!  It also went really fast compared to a chemo day so that was good. 

Good luck to everyone!!!!!!

Dx 3/2/2012, DCIS/IDC, Right, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/12/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/6/2012 AC + T (Taxol) Radiation Therapy 10/16/2012 Breast, Lymph nodes Hormonal Therapy 10/23/2012 Surgery 1/8/2013 Prophylactic ovary removal Hormonal Therapy 1/15/2013 Femara (letrozole) Hormonal Therapy 1/29/2014 Arimidex (anastrozole) Hormonal Therapy 11/13/2014 Aromasin (exemestane)
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Apr 10, 2014 07:56AM DivineMrsM wrote:

I had a zometa iv monthly for almost three years and have recently gone to having it just once every three months.  It was something that barely affected me, perhaps a mild headache for a day or two.  

I learned to ask for the iv to be administered over 30 minutes and not 15 as it seemed the slower drip makes it more tolerable.  Some women ask for a drip even slower than that to help tolerate it better.

I believe it does help to keep well hydrated.

There are quite a few women on these boards who felt like the first zometa iv was roughest and then it got easier after that.  

found lump 12/22/10~er+/pr+/her2- stage iv bone mets------------- Chemo~lumpectomy~radiation~arimidex------------- March2019/Ibrance-Aromasin---------- Sept2019/Verzenio-Aromasin
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Apr 11, 2014 07:00PM TeamKim wrote:

Thanks Momof & Divine -- I seem to have been pretty lucky so far.  I feel sleepy, but no other SEs to speak of.  The nurses advised me to take Tylenol around the clock for a couple of days to fend off any aches and pains -- that might be what is making me sleepy as well.  So far, so good.  Made my appt. for the next Zometa in 6 months.

If you are going through Hell, keep going." -- Winston Churchill Dx 6/28/2013, DCIS, 1cm, Stage 0, Grade 1, 0/2 nodes, ER+/PR+ Dx 7/19/2013, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 7/29/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 10/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 10/30/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 11/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 12/11/2013 Cytoxan (cyclophosphamide) Hormonal Therapy 1/19/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/19/2014 3DCRT: Breast
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Apr 11, 2014 10:45PM Momof3GreatKids wrote:

I am glad it is going well for you TeamKim!  Don't forget to drink lots of water also. I did that and i am assuming that is what helped the yuck go away faster!!!!!

Dx 3/2/2012, DCIS/IDC, Right, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/12/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/6/2012 AC + T (Taxol) Radiation Therapy 10/16/2012 Breast, Lymph nodes Hormonal Therapy 10/23/2012 Surgery 1/8/2013 Prophylactic ovary removal Hormonal Therapy 1/15/2013 Femara (letrozole) Hormonal Therapy 1/29/2014 Arimidex (anastrozole) Hormonal Therapy 11/13/2014 Aromasin (exemestane)
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Apr 24, 2014 02:37PM clariceak wrote:

I have been taking zometa for last 4 years.  The first infusion resulted  in flu like symptoms which are quite common.  Each subsequent infusion had fewer side effects.

I requested Zometa because there is some evidence to suggest that it may help prevent bone mets.  I also had low bone density so my onc had no problem prescribing it, and I'm grateful for that.  The most serious side effect may be onj, which is why it is recommended that you have any serious dental work done prior to starting zometa.

As Stage IIIC, I feel I have less options than the average patient so I will continue on Zometa despite the risks.

Chemo, rads, Femera, Zometa, Ooph Dx 9/8/2009, IDC, Stage IIIC, 9/35 nodes, PR+, HER2- Chemotherapy 10/6/2009 Adriamycin (doxorubicin), Taxol (paclitaxel) Radiation Therapy 3/24/2010 Breast, Lymph nodes Hormonal Therapy 5/10/2010 Femara (letrozole) Surgery Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal
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Jun 9, 2014 11:59PM jsrose14 wrote:

hi. I am surprised there are not more comments in this thread. I saw and endocrinologist that specializes in bine density loss and she is recommending zometa for me. I see my onc next week to hear what she has to say. I  42 with osteoporosis now- I lost 13% bone density  in one year and broke my wrist this winter. I am wondering if anyone was offered prolia or any other drug and why their onc chose zometa?  I am pretty afraid of the side effects and just hate to have to take another medicine. I am also on arimidex and had and oophorectomy as well as chemo so I have lots of things eating away at my bone density. I am also seeing a naturopathic doctor in a week so see what her recommendations are.  

Thanks  

Jrose 

BRCA2+, Oncotype score 16, LVI found in pathology Dx 1/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 3/5/2013 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/30/2013 CMF Hormonal Therapy 9/6/2013 Arimidex (anastrozole)
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Jun 10, 2014 06:13PM karenhi wrote:

I will be anxiously awaiting the opinion of your naturopath.  I too have been recommended to do 3 years of a twice-yearly infusion by my oncologist to prevent bone mets. My oncologist seems to think it will become part of the standard treatment along with the aromatase inhibititors. Seems I also qualify based on the fact that my bone density has decreased with chemo and several months on Femara -- I now officially have osteoporosis.  But there are those who have terrible and long-lasting side effects (found on an osteoporosis forum) and that scares me quite a lot.  But for the time being at least I am refusing the Zometa because I had a spinal fusion 6 months ago and no one seems to know how that will be affected by these infusions.

Dx 3/2013, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 3/21/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 4/30/2013 AC + T (Taxol) Radiation Therapy 9/3/2013 Breast, Lymph nodes Hormonal Therapy 12/19/2013 Femara (letrozole)
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Jun 11, 2014 12:35AM Holeinone wrote:

Jrose & Karen, 

I got one Zometa infusion in April, planning on the twice a year, for 3 years. I had to push for it, take in articles to my MO. I do not have osteoporosis. I was sleepy & achy for 3 days, but no big deal. 

Compared to chemo, a cake walk..

Spinal mets Surgery 7/22/2013 Lumpectomy: Left Chemotherapy 8/22/2013 AC + T (Taxol) Radiation Therapy 12/23/2013 Breast, Lymph nodes Dx 3/3/2016, ILC, Left, 1cm, Stage IV, metastasized to liver, Grade 2, 6/7 nodes, ER+/PR+, HER2-
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Jul 6, 2014 10:47PM - edited Jul 6, 2014 11:15PM by RMlulu

Hi y'all

1st year Aromasin anniversary showed significant bone loss hips&spine :(. MO says Zometa every 6 months. Infusion schedule for Friday morning and I fly out late afternoon 6 hour flight)  

Is the flight doable?  Will I be sick in the air? Any  precautions?

Should I be pushing for an oral RX?  If so what?

Or beggedfor tamoxifen ...MO did not like risk of uterine cancer strokes?  

I'm confused. Your input is appreciated... I'll start reading back.

Thanks

Dx 12/18/2012, IDC, <1cm, Stage IB, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 1/23/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 3/14/2013 Hormonal Therapy 6/1/2013 Aromasin (exemestane)
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Jul 7, 2014 09:30AM - edited Jul 7, 2014 09:35AM by corky60

Cindy, why not reschedule the infusion until you return from your trip?  If you have SEs you don't want to be in the air or away from home if you can help it.  Surely the infusion could be rescheduled. 

Tamoxifen is kinder to the bones.  Do you have a family history of stroke or blood clots that might prevent you from taking it?  All hormonals have SEs.  We're put in the position of choosing our poison and managing the SEs as best we can.  Hang in there! --Corky

Dx 3/25/2013, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 5/28/2013 Breast
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Jul 7, 2014 09:48AM - edited Jul 7, 2014 09:51AM by peacestrength

RMlulu - I get Zometa every 6 months as well.  2nd infusion is in August; 1st infusion my SE's were a high fever for a day and achy for a bout a week.  This next infusion my mo is going to add small amount of steriod and tylenol.

If this is your first Zometa infusion, you may want to reschedule until after your trip - only to see if you'll have se's.  

Also, I'm working with a naturopath that specializes in oncology and she has recommended Zometa because of my bc stage and it's another "targeted" treatment.

2013, IDC Stage 3a
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Jul 7, 2014 01:45PM RMlulu wrote:

Thanks Corky and Peace!

Corky  - Life was so simple...annual check ups and spend holidays with family...Than fly back to my retirement spot. Have been checking out teams in my area and will make the switch soon, but for now excuse to visit. Postponing flight a few days.

Peacestrength - yes, I will delay my flight home...hoping minimal SEs...was thinking of taking Benadryl and Tylenol prior to infusion.  Great that your naturopath is able to target your supplements to compliment your care.  

Headed out for supplements and eating my prunes!  Will be a tad careful pounding my bones and lifting weights...but goal is still 11,00-15,000 steps a day...love my FitBit 

You are the best!  Thank you so much :)

Cindy

Dx 12/18/2012, IDC, <1cm, Stage IB, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 1/23/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 3/14/2013 Hormonal Therapy 6/1/2013 Aromasin (exemestane)
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Jul 12, 2014 08:34PM RMlulu wrote:

Thanks for the info.

My 1st infusion of Zometa went well and I was able to fly just a few hours later.  Today a bit sleepy, but pleased that it us done.  Now fingers&toes crossed that next Dexa Scan will preserve bones and no more loss on Aromasin.

Suggestions on supplements appreciated.

Dx 12/18/2012, IDC, <1cm, Stage IB, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 1/23/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 3/14/2013 Hormonal Therapy 6/1/2013 Aromasin (exemestane)
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Jul 12, 2014 09:20PM Notbuyingit wrote:

i have been prescribed this also - but i said i had never even had a bone density test & don't want it if i don't need it...Onc said it's to build up my bones in case the Anastrozole takes a toll? and of course added that - tho not clinically proven - it's possible it decreases your chance of recurrence (the golden ticket to agreement) 

after reading this thread i am more skeptical than ever - she also said i should go to the dentist first - something to do with my jaw...definitely need to do more research

Dx 6/28/2013, ILC, Grade 2, 8/15 nodes, ER+/PR+, HER2+ Surgery 7/15/2013 Mastectomy: Left Targeted Therapy 9/9/2013 Herceptin (trastuzumab) Chemotherapy 9/9/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 3/12/2014 Breast, Lymph nodes
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Jul 13, 2014 02:49AM Momine wrote:

Notbuyingit, the DEXA scan to measure bone density is minimally invasive. The radiation is so low that the tech stays in the room. It takes a total of 10 minutes and you just lie on the table, while a wand moves up and down your body.

As for recurrence prevention, that all depends. There is a real question as to whether this holds for women who are not menopausal at DX, for example. An expert committee will be meeting in October to look at all the research on zometa in women with BC and they will then make a recommendation for the profession on how and when to use zometa for us BC patients. My doc and I agreed, since I am also reluctant to start the bone drugs, that we will discuss again after the committee meets.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jul 13, 2014 07:28AM MomMom wrote:

My MO says that it will add 3% against recurrence for me, but we will discuss more when I'm done with chemo in 2 weeks. I had a dental visit this week to get an all clear as there can be no looming  serious dental work.  Small 1-3% chance of bone necrosis in jaw. 

Dx 1/9/2014, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 1/28/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 2/25/2014 AC + T (Taxol) Radiation Therapy 8/6/2014 Breast, Lymph nodes

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