Join Us

We are 217,485 members in 84 forums discussing 160,589 topics.

Help with Abbreviations

Topic: Zometa

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Nov 25, 2019 02:02PM

everetta wrote:

My oncologist has recommended zometa infusion every 6 months to help reduce metastasis for my stage 1a lobular breast cancer (oncotype 29). The first time I had it I got sick 6 days after the infusion--terribly sore fingers and legs..difficulty holding things and walking. It went away gradually after about 3-4 days. I am due to have it again, but am scared I will have a horrible reaction. If the reaction was the same as last time I could tolerate it since I know it went away. I am worried about permanent damage. Does anyone have advice or experience with this.

Log in to post a reply

Page 1 of 1 (18 results)

Posts 1 - 18 (18 total)

Log in to post a reply

Nov 26, 2019 11:07AM pesky904 wrote:

I'm sorry to hear about your side effects. I'm interested to hear others' replies because I am due to start Zometa soon.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
Log in to post a reply

Nov 26, 2019 12:22PM claireinaz wrote:

Are you high risk for metastasis? Are you osteopenic or does osteoporosis run in your family? I wonder, because of your low staging, why your doc is so worried about metastasis. It seems pretty dramatic to administer a drug every six months that is making you sick if you aren't at high risk for recurrence already (+ nodes, etc. etc.).

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
Log in to post a reply

Nov 26, 2019 02:23PM everetta wrote:

HI Claire, I think my doctor would have supported not doing Zometa but I was the one that was more anxious and wanted to do everything I could. Although clinically I am low risk, my oncotype was 31 (redone and came back 27) so elevated and making it higher risk. Some doctors recommended chemo which I did not do. The zometa was uncomfortable but short lived--I was scared the negative effects wouldn't go away but they did gradually over two weeks. It does offer reduction of risk of mets so I will try it one more time--I am only worried about long term damage and wondered if anyone experienced that. I do not have osteoporosis myself or in my family..the motivation to do it is the higher oncotype, in general people don't have a bad reaction so little negative risk, and some data that it decreases mets in postmenopausal women.

Log in to post a reply

Nov 26, 2019 03:55PM Simbobby wrote:

Hi Everett’s,

I have had two Zometa infusions so far - six months apart.

My Oncologist warned me that I would have flu like symptoms the first time.

And I did. Chills, fever, aches that lasted about three days.

He said the second one would not have this effect. And it didn’t,

I had no side effects from the second infusion

Dx 9/15/2017, IDC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2+ Chemotherapy 10/9/2017 AC + T (Taxol) Surgery 3/29/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right Dx 4/3/2018, Right, 24/26 nodes Hormonal Therapy 4/10/2018 Femara (letrozole) Surgery 3/12/2019 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Nov 26, 2019 04:12PM everetta wrote:

That is a hopeful thought. I had heard the many people only have the negative reaction the first time. I am curious is that is common. My first reaction was atypical.low fever the second day..fine the 3rd and 4th..awful bone pain days 5-7..improvement and back to normal a few days later. I hope I will have little or no reaction the second time. Thanks for letting me know...this is encouraging.

Log in to post a reply

Nov 26, 2019 04:57PM AnnC2019 wrote:

I had one infusion so far. Felt sick about a day or two. Next one is in July

Dx 6/19/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 8/15/2019 Arimidex (anastrozole) Surgery 8/28/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Radiation Therapy 11/4/2019 Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Nov 26, 2019 06:05PM OTMom wrote:

My MO says the first is the worst and it gets better from there. I felt pretty awful after my first one. After the second I was definitely tired, but didn't feel like I did the first time.

diagnosed at 41 Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/5/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/13/2019 Whole-breast: Breast Hormonal Therapy 3/3/2019 Arimidex (anastrozole)
Log in to post a reply

Nov 26, 2019 07:51PM Hopeful82014 wrote:

I've had basically no problems with Zometa but realize that others certainly have. My MO advised hydrating extremely well the days prior, day of, and following day as well Tylenol or an NSAID a couple hours before the infusion. That's pretty much what I do - I put a note on my calendar to make sure I don't forget to step up my water consumption and that I don't forget the Advil.

For our purposes (warding off metastasis as well as protecting our bones during ET) 3 years (6 treatments total) is pretty standard so for most of us, the treatment is of finite duration.

Dx IDC
Log in to post a reply

Nov 27, 2019 01:29AM everetta wrote:

Thanks. I hope it is true that the reaction the second time is less. I have heard that as well.

Log in to post a reply

Nov 27, 2019 01:30AM everetta wrote:

Thanks for the suggestion on hydrating and medicating before and after. Are there certain anti inflammatory that you are supposed to take or avoid. I thought I read that there were some types you shouldn't use. Sounds like Advil and tylenol are ok. Aleve has helped me with bone pain for other things--do you know if that is ok to take?

Log in to post a reply

Nov 27, 2019 01:47AM Hopeful82014 wrote:

Everetta, I’m not really supposed to use. NSAIDs at all but confess to cheating at times because Tylenol doesn’t cut it for me. At various times I’ve used both Advil and Aleve and noticed absolutely no difference in regard to how I feel after Zometa. If your preference is for Aleve, I would think it would be fine to start with that and see how you do. Since you had that strong reaction the first time you might want to go on taking it for a few days afterwards. I sure hope it helps!

Dx IDC
Log in to post a reply

Dec 14, 2019 12:24AM peaches1 wrote:

Hi- I don't come here very often anymore since I am not receiving chemo or radiation, but I do Zometa every six months. I think I have two infusions to go. The first time I had one, I got a mild case of the flu. After four days I called up the nurse navigator, and she told me that this happens to everybody the first time, but it almost never happens after that. I have not have any problems with Zometa since then other than the fact that I had to have a root canal, and so had to postpone one of the infusions for three months. They want you to see your dentist a few weeks before you have the infusion to make sure your teeth are okay.

Dx 5/13/2016, IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 5/27/2016 Lumpectomy Chemotherapy 7/17/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/24/2016 Whole-breast: Breast Hormonal Therapy 12/15/2016 Femara (letrozole)
Log in to post a reply

Dec 14, 2019 09:12AM everetta wrote:

Thanks for the reply and for everyone's replies. I had the zometa 6 days ago and haven't had any reaction to it. Where the first time I had fever and enormous pain in my hands and legs (could barely walk or hold a cup) this time I haven't felt bad at all. I had also heard that the second fusion people rarely had bad reactions (although some still did)..so maybe it is because of it being the second time, but I also followed the advice others gave and starting hydrating two days before and taking advil 2pills every 6 hours also day before and continued for 3 days.Also the doctor slowed down the infusion and it took 2 hours. Either way I am so glad I did it a second time (since it does give benefit) and that I had absolutely no reaction--just felt myself. The first time I didn't expect to feel anything so went on a hike a few days after and got dehydrated, exercised to hard and this time I took it real easy and rested and hydrated.

Log in to post a reply

Dec 30, 2019 04:07PM Brilee76 wrote:

Hi ladies :) I just had my first Zometa infusion today. I'm following this thread and will let you guys know how things go for me. I have a cold so I'm already stuffy, tired and coughing. Here's hoping I avoid anything too yucky!

~Bridget (BRCA2, 7/1/19-Lupron, 12/30/19-Zometa) Dx 5/16/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 6/30/2019 Hormonal Therapy 6/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/5/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 9/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/15/2019 Femara (letrozole) Hormonal Therapy 12/29/2019 Surgery 1/19/2020 Prophylactic ovary removal
Log in to post a reply

Dec 30, 2019 04:58PM 7of9 wrote:

I used to get 5 vicodin with ea infusion ( I've done Zometa 6x... this will be my 7th pending a bone dense test and kidney ck) A little worried about my teeth. Damn over regulations my nurse practitioner told me they aren't allowed to give vicodin unless your terminal. BS. I still get achy but exercise and tylenol I get thru work. I would go thru 2-3 of the vicodin isually then sit on the others for a really bad achy day ( radiation, 4 surgeries and Arimidex) when stress, cold lack of moving and or bad sleep threatens to ruin my day. 1/2 pill would get me moving, loosen up and not scared everything was mets. I cant take muscle relaxers, they mess with my colitis. Just stay warm, exercise and take your tylenol. :)

If you're going through hell, keep on going. You might get out before the devil even knows you're there. Dx 1/18/2012, IDC, Left, 2cm, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/1/2012 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/1/2012 Reconstruction (left); Reconstruction (right) Dx 12/23/2015, IDC, Left, 2cm, Grade 2, 10/14 nodes, ER+/PR+, HER2- Surgery 1/19/2016 Lymph node removal: Left, Underarm/Axillary Surgery 1/19/2016 Prophylactic ovary removal Radiation Therapy 2/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy 4/1/2016 Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Dec 30, 2019 11:59PM LillianGish wrote:

Hi,

I had my first Zometa infusion about a month ago. I feel really lucky in that it didn’t make me sick. In fact, I felt no different. I took no meds before or after the infusion. Have no magic cure. Just lucky.

I don’t in any way doubt the experience of others, but just want to let readers know it isn’t for certain that Zometa will make you feel awful.

My next infusion is in May. My MO says these infusions are almost as effective as chemo in reducing the risk of bone metastasis. Totally worth it to me, even if it had made me ill for a few days.

Dx 9/18/2018, IDC, Right, 3cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/29/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 12/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/5/2019 Whole-breast Hormonal Therapy 5/1/2019 Femara (letrozole)
Log in to post a reply

Jan 1, 2020 10:18AM Brilee76 wrote:

Looks like I got nausea, diarrhea, fever, bone muscle and joint pain. I'm pretty happy these side effects are only for the first treatment.

~Bridget (BRCA2, 7/1/19-Lupron, 12/30/19-Zometa) Dx 5/16/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 6/30/2019 Hormonal Therapy 6/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/5/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 9/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/15/2019 Femara (letrozole) Hormonal Therapy 12/29/2019 Surgery 1/19/2020 Prophylactic ovary removal
Log in to post a reply

Jan 2, 2020 09:22AM windingshores wrote:

My oncologist suggested a half dose for me. Still considering it but I have severe osteoporosis and am still on my Femara, which may end soon. Oncologist said I could take two years off Femara, do Reclast (lower dose) and then do two more years of Femara.

I can't imagine taking a biphosphanate if I didn't have osteoporosis but understand that since you didn't do chemo, you wanted more protection.


Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy

Page 1 of 1 (18 results)