Anyone doing Zometa to reduce risk?
Comments
-
I had one Zometa infusion. It gave me fever and body aches so severe I could barely walk, and I'm a pretty tough old bird. My onc switched to Prolia every six months, and then I moved to another state and found another wonderful onc. He said denosumab (Prolia) and alendronate (Fosamax) had the same mechanism of action for prevention of mets, and alendronate was cheaper and taken orally once a week. So I've been doing alendronate for a year or so.
It's all a risk/benefit decision. My teeth are very healthy but I would worry if extractions were necessary. There's also emerging information about risk of atypical femur fracture.
Cancer. The gift that keeps on giving.
-
Hi Blue!
I recall my first infusion of zometa wiped me out - flu like symptoms, fever etc With each subsequent infusion the side effects went away! Hope that’s the case with you too
-
I just did a search and found this thread. Holy cow. I just had my first zoledronic acid infusion last Tuesday and I thought I Was having an allergic reaction and ended up at the ER. I was told to expect minor "flu like" symptoms but I was so focused on the jaw stuff, I never imagined what it might be like when I got home. A few hours after the infusion, I started to feel the flu symptoms. By 11pm, I had a fever, my muscles were hurting from head to toe so much that I couldn't hold my own body upright. I am not brought down easily - I've been through multiple surgeries, chemo, radiation, etc. - I'm 53. I've got a very high tolerance for pain. This knocked me down and scared the crap out of me. It wasn't an allergic reaction, just a very painful, very awful one. Here I am almost a week later - it took 3 days to shake the fever and body aches, but I'm still headachy and just not 100% right. I couldn't eat for a few days. Constipation too. Just really as bad as any reaction I had to any chemo infusions. I am totally blown away by what the infusion did to me. I understand all of the reasons to do these things. And I guess, now that I know how bad it can be, I'll mentally prepare differently for the next ones (once every 6 months). But I wish someone had said "just be prepared, it's possible this will be as rough as anything you've done so far" and maybe then I wouldn't have freaked out and gone to the ER. Not even my worst chemo days (and I had some very bad ones) led me to the ER. But I think that's because I expected to feel horrific. Anyway, now that I've read this thread, I feel much less alone. And maybe - based on what I've read here - the next ones won't be as bad. To me, I'd really do anything to protect myself from recurrence - but I just feel like I need to know what I'm getting into in order to cope effectively. Or to endure. Anyway, wow! I could never have guessed that, after everything I've been through, this one "should be fairly easy" infusion would be the thing to send me to the ER. Thanks for all of your posts. I feel so relieved that it wasn't just me! Onward!
-
I had a pretty strong reaction as well to my first infusion, although it kicked in about 18 hours later. I felt pretty crappy for about two days. I have my next (annual) infusion in March and I think my oncologist will add some premeds into the drip, my guess is benadryl or something to reduce the potential reaction. I will try to remember and post back here when I have it.
-
hi there- I am almost 4.5 years out from and doing well-have had stable osteopenia for years-- I am one who will be on letrozole for 7 years--stage 2b- with high oncotype score--/2 nodes--I had my first zometa infusion in july and will continue every 6 month for 3 years--I was not expecting the side effects I had--awful total body aches the 2 nd day that lasted only 1 day and on day 8 my 3 areas of regular age related arthritis - foot,neck ,base of thumbs flared and very painful for 3 days- treated with warm hand soaks and otc pain pains--will be better prepared next time in January---will stick with it as doing all I can to reduce recurrence risk to bone and progressing to osteoporosis--next dexascan next summer
have been on letrozole 4 years this January and other than insomnia and morning stiffness am doing fine with it-think of it as my best friend going forward--best to all-
-
Kaylie... I don't know if it is an option for you but I felt much better after switching from letrozole to anastrozole.
Kmom... I have done Zometa as well. I like the thought of both a (slight or possible) risk reduction, but also prevention of boneloss. I have felt the side effects were worse after the first treatment and one of the nurses said it could be reduced by prolonging the infusion time a bit. Dont know if that i true.
-
Hi, all!i know this is an older thread, but I was so happy to see some more recent posts! I had my first Zometa (zoledronic acid) infusion today to counter any negative effects of Exemestane and potentially minimize risks of bone mets - it was infused over 20 minutes and ended at about 1:15 PM EST. It’s now 10:30 PM and I haven’t felt much but a headache, but I got my second Lupron injection today, too, so the headache could be from that.
I am hoping I get lucky and don’t have the Late Phase Reaction, but it sounds like several of you didn’t have any symptoms until hours or a couple of days later.I will be getting the infusions as a preventative every 6 months, and understand that the first one is the most likely to cause reactions. I haven’t had my Dexascan yet, as the schedulers are a bit overwhelmed with back-logged appointments and absences due to Covid. I’m curious to see how these 51 year old bones are holding up!
Any advice from anyone who has endured this treatment for several infusions?
Hope everyone is well and enjoying the beginnings of a new year!
Jen
-
Hi Jen,
I forgot how bad this was until I re-read my post and memories started coming back. My MO had warned me it might be bad, she had a few patients who had bad experiences, so at least I was mentally prepared.
If I remember correctly, it didn't hit until the middle of the night, and I woke up feeling as if I had the flu. I had pretty bad nausea, so if you have meds for that be ready. I remember having a hard time even getting downstairs to get a glass of water. It took a few days before I started getting back to normal. I don't remember much of the details other than really bad nausea and being completely wiped out.
My advice: Have meds and a glass of water next to your bed in case you need it in the middle of the night. Take it easy tomorrow if you are not feeling well and just remind yourself you will start to feel better soon.
My next infusion was ok, it was a completely different experience.
Good luck - you will get though it!
Take Care,
Blue
-
Jen stay really hydrated and be prepared for delayed symptoms. I think mine kicked in about 18 hours after my first infusion. Just felt fluish kind of crappy for a day or so. Hopefully you won't experience any symptoms at all.
-
Hi Jen - I'm also on Zometa (every six months) and have had two infusions so far. The first infusion hit hard (middle of the night after the infusion, severe flu symptoms and overall body aches). For the second infusion, my MO ordered a liter of saline fluid to be infused concurrently and slowed down the rate of infusion. The second infusion took about 90 minutes, but I had no reaction at all afterwards. I plan to follow the same regimen for my future infusions. Here's hoping you had a peaceful night and no reactions to your first infusion!
-
I forgot about the hydration - my MO warned me and I prepared by starting extra hydration a day or two before the actual infusion.... no idea if it would have been worse without the hydration.
I think I might have had saline with my second infusion...
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team