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Topic: Anyone doing Zometa to reduce risk?

Forum: Stage III Breast Cancer — You are not alone. Meet others who have Stage III breast cancer.

Posted on: Jan 25, 2021 01:09PM - edited Jan 25, 2021 01:10PM by KMom57

KMom57 wrote:

MO wants to do Zometa twice yearly to reduce risk of bone Mets. Second MO, when I asked, says it's controversial. Says he will do it if I want, but that he would not suggest it himself because nothing is “free." That he would not want to make me do it, and then I turn out to be the 1 in 100 with osteonecrosis for what Is not a huge reduction of risk. Anyone else doing it, or have insights from other MOs/sources?

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/14/2020 Prophylactic ovary removal Surgery 5/17/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/30/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jan 25, 2021 03:26PM exbrnxgrl wrote:

Kmom57,

I was on another, older bone strengthening drug quite a few years ago. My mo had me stop due to risks of spontaneous femur fractures and osteonecrosis of the jaw. She felt that here was not enough strong evidence of bone strengthening drugs decreasing the risk of bone mets to justify it’s continuing use. That was about 6 years ago and I have had no progression. There are still mo’s who support it’s use but increasingly many feel as your second mo and my mo do. My mo, BTW, is relatively new to me (my first one moved out of the US) but this is the opinion that both held. All the best

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jan 25, 2021 04:07PM SpecialK wrote:

Part of the thought on using bone strengthening meds to reduce bone mets risk has to do with your bone density as well, in that porous bones may allow mets a spot to set up. Have you had a DEXA scan to see what your bone density is currently? I might hesitate to use this class of drugs for risk reduction only if bone density is good. I was diagnosed with osteopenia nine years before breast cancer, but it was unmedicated during that time due to an inability to tolerate oral meds. My osteopenia remained stable during those nine years, but it worsened considerably after chemo and six months of letrozole, so my MO recommended Prolia. If I received any benefit of reduced risk of bone mets, which my MO and I did discuss prior to starting, it was incidental to the primary benefit of strengthening my bones.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Jan 25, 2021 05:22PM LillyIsHere wrote:

My MO put me in Zometa every 6 months for the same reason, to reduce the recurrence risk. My DEXA scan showed normal bone density and I didn't want to start Zometa but the way he explained it to me was convincing. I also asked a friend who is knowable about this and he said Bisphosphonates have been used for a long time even in children. 2xyear for 3 years is not enough to create bones to break. I started in August and next month I'm going for the second infusion.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Jan 25, 2021 06:57PM - edited Jan 25, 2021 07:00PM by KMom57

Xbrnxgrl, SpecialK, and Lilly — thanks for the input. I have a DEXA scheduled. it will be my first baseline even though I took Femara for six months previously, and two this round. I should have pushed that earlier, but I guess I was overwhelmed. MO scheduled the Zometa immediately after, but I've been thinking about at least waiting to make a decision until after i have results from the DEXAand can think that through. Also, I have put off my dental care due to covid, and am uncomfortable doing Zometa until I have seen the dentist. Thanks for the input. It helps clarify my instincts a bit.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/14/2020 Prophylactic ovary removal Surgery 5/17/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/30/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jan 25, 2021 07:04PM exbrnxgrl wrote:

I agree with your decision. Before you consider any bone strengthening drug please have all dental work completed. Bear in mind that whether these drugs help decrease the risk of bone mets is up for debate. All the best

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jan 25, 2021 08:23PM AnnC2019 wrote:

I get zometa twice a year. I don’t know how many more rounds my oncologist will recommend. I think this will be my fourth in June. I never had a Dexa scan butother scans show bone degeneration.

Dx 6/19/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 8/14/2019 Arimidex (anastrozole) Surgery 8/27/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Radiation Therapy 11/4/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/21/2020 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 12/22/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 25, 2021 10:05PM 7of9 wrote:

I am going for my 10th...every 6 months. Possibly last one. Not sure if relieved or worried. Whatever we've been doing for 5 yrs has worked... i guess! I brush too hard exposing roots so I worry about the jaw issues, but nothing else so far.

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 5/31/2012 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/31/2012 Reconstruction (left); Reconstruction (right) Dx 12/23/2015, IDC, Left, 2cm, Grade 2, 10/14 nodes, ER+/PR+, HER2- Surgery 1/18/2016 Lymph node removal: Left, Underarm/Axillary Surgery 1/18/2016 Prophylactic ovary removal Radiation Therapy 2/10/2016 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy 3/31/2016 Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
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Jan 25, 2021 10:45PM - edited Jan 25, 2021 10:47PM by exbrnxgrl

7 of 9,

I stopped my bone strengthening drug, an older one called Aredia, over seven years ago. No progression but a touch of osteopenia and no guarantees about any of it 🤷🏻.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jan 26, 2021 10:11AM ctmbsikia wrote:

It seems interesting that a Doc would suggest this drug without a baseline DEXA. Let us know how that goes. I have had 2. Baseline right at diagnosis showed osteoporosis left hip, and osteopenia in my spine. Second scan, and after being on the anastrozole I've lost 5% in hip. I was approved for (1) Prolia shot, then denied all the other times. So, I always like to see what others are being treated with, or not. I have an appt tomorrow so not sure if Prolia is denied again, if he will offer up another med, or if I just stay med free!

I found this while reading up on Zometa for anyone wondering about how long you should have it:


Women with a higher risk are suggested to continue oral treatment for up to 10 years and 6 years for intravenous use, but their risk of fractures should be reassessed every 2 to 3 years during the therapy. For women with lower risks after five years of oral treatment and three years of intravenous treatment, the treatment can be stopped, but the risk of fractures should still be reassessed regularly.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Jan 29, 2021 01:44PM LillyIsHere wrote:

KMom57, what did you decide? I also found this one from Mayo Clinic:

Strategies that have been linked to a reduced risk of breast cancer recurrence include:

Hormone therapy. Taking hormone therapy after your initial treatment may reduce the risk of recurrence if you have hormone receptor positive breast cancer. Hormone therapy may continue for at least five years.

Chemotherapy. For people with breast cancer who have an increased risk of cancer recurrence, chemotherapy has been shown to decrease the chance that cancer will recur, and those who receive chemotherapy live longer.

Radiation therapy. People who've had a breast-sparing operation to treat their breast cancer and those who had a large tumor or inflammatory breast cancer have a lower chance of the cancer recurring if they're treated with radiation therapy.

Targeted therapy. If your cancer makes extra HER2 protein, drugs that target that protein can help decrease the chance of the cancer recurring.

Bone-building drugs. Taking bone-building drugs reduces the risk of cancer recurring in the bones (bone metastasis) in people with an increased risk for breast cancer recurrence.

Maintaining a healthy weight. Maintaining a healthy weight may help decrease the risk of recurrent breast cancer.

Exercising. Regular exercise may reduce your risk of breast cancer recurrence.

Choosing a healthy diet. Focus on including lots of vegetables, fruits and whole grains in your diet. If you choose to drink alcohol, limit yourself to one drink a day.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Jan 29, 2021 02:05PM KMom57 wrote:

Lilly, I haven’t decided. I had a DEXA today and waiting for results on that. MO also agreed I should see my dentist first, but he does want me to do it. I’ll see the dentist, and do some more research and then decide.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/14/2020 Prophylactic ovary removal Surgery 5/17/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/30/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jan 29, 2021 03:38PM LillyIsHere wrote:

I have a feeling when Zometa is done as a monthly infusion, osteonecrosis may happen otherwise, it will be very low risk. I postponed my Zometa infusion for almost a year because I was so worried about SE but once I learned the benefits, I went for it. In my case, I am recommended a total of 6 infusions in 3 years. I wonder what is your MO going to recommend. Do you go to a cancer center that is known from NCI?

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Jan 29, 2021 04:16PM - edited Jan 29, 2021 04:16PM by brittonkb

I met with my MO a couple of weeks ago. After I finish radiation, he wants me to do Zometa infusions 2x/year for 3 years to reduce the risk of recurrence. I'll have a bone density scan every 2 years.

Dx 4/29/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 3/13 nodes, ER+/PR+, HER2- (IHC) Surgery 5/19/2020 Lumpectomy; Lymph node removal: Sentinel Surgery 7/5/2020 Lymph node removal: Underarm/Axillary Chemotherapy 8/2/2020 AC + T (Taxol) Radiation Therapy 1/19/2021 Whole-breast: Breast, Lymph nodes
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Jan 29, 2021 04:53PM - edited Jan 29, 2021 04:55PM by KMom57

Lilly, yes I go to an NCI center. MO is recommending every six months for three years. He told me the risk is low, but not zero. That osteonecrosis when it happens, generally is connected to dental procedures like extractions — anything that messes with the bone, so I should see the dentist first and make sure they know why.He also told me we will need to check my phosphorous regularly because Zometa sucks it out of the bone, or something like that, so you can't let it get too low. Since mine is relatively high, he does not expect problems with that. I may have the actual effect on phosphorous wrong....maybe it doesn’t suck it out of the bone but something like that.....I just know he said we will be watching that level to make sure it does not get too low.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/14/2020 Prophylactic ovary removal Surgery 5/17/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/30/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jan 29, 2021 06:41PM LillyIsHere wrote:

KMom57, same here. I checked with the dentist before starting Zometa. Also, I get a blood test + MO visit to approve the infusion +infusion within 3 hours the same day as Zometa infusion. I had SE the first time I took it but I will take any chance of reducing recurrence. I'm curious what will your MO say.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Jan 29, 2021 07:13PM orangeflower wrote:

I'm not because I'm pre-menopausal. My doctor said Zometa is only used for risk reduction in post-menopausal women. I'm not sure why.

Dx 1/29/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 1/29/2020, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 1/29/2020, DCIS, Left, 4cm, Stage 0, Grade 2, ER+/PR+, HER2- Surgery 2/25/2020 Mastectomy: Left, Right Surgery 6/14/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 29, 2021 08:27PM - edited Jan 29, 2021 08:27PM by LillyIsHere

I am posting this link from BevJen regarding Zometa:https://www.cancer.gov/news-events/cancer-currents...

I hope using your link would be OK with you BevJen Hug


“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Feb 4, 2021 07:27PM - edited Feb 4, 2021 07:42PM by luckypenny

hi! I took zometa 2x a year for 2 or 3 years can't remember - to prevent Mets. My onc went along with it and I am almost 10 years out. I did get osteonecrosis of the jaw - however I would do zometa all over again! It's been over 2 years since I had any jaw issue and as soon as feel that little pain I have an ongoing script of antibiotic and special mouthwash It is scary but I really believe that zometa helped me stay cancer free.

Dx 9/2011, IDC, 6cm+, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR-, HER2- Surgery 9/26/2011 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 10/25/2011 AC + T (Taxol) Surgery 2/12/2012 Prophylactic ovary removal Radiation Therapy 2/26/2012 Breast, Lymph nodes Hormonal Therapy 3/31/2012 Femara (letrozole)
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Feb 4, 2021 09:53PM finallyoverit wrote:

Interesting discussion. I’ve had a Zometa infusion every 3 months for 4 years now. If my MO put a time frame on it, I don’t remember it. I’ll have to ask him. It’s odd too that I’m getting so often when others are not.

Dx 10/2011, IDC, Stage IIA, 0/4 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone
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Feb 11, 2021 06:14PM blue22 wrote:

I had my first Zometa infusion yesterday. I woke up at 2 amp with terrible chills, and feeling all over weak and unwell. I tried to go downstairs and make a ginger tea, and nearly threw up. I took some Ativan for the nausea, but am running out. I have been sleeping most of the day, but waking up every hour or so to pee and/or hydrate.

My MO warned me the side effects could be bad, but we didn't really discuss what to do to alleviate them. Any suggestions?

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Feb 11, 2021 09:27PM - edited Feb 11, 2021 09:28PM by Sunshine99

blue, I'm so sorry about the Zometa side effects. In my experience, the "worst" SEs were with the first infusion - pretty bad nausea, but no vomiting. I got up and took a Compazine. I had a bit of a fever for a couple of days, but not super high.

For my second infusion, I had some nausea, but nothing like the first time. Slight fever, but again, not as bad as the first time. I did take a Compazine before I went to bed after my second infusion.

Since then (I've had nine total infusions, once a month), I've really had NO SEs. I'm hoping the same for you. You might want to ask about an anti-nausea med and take it maybe before bed the evening after your infusion. How often will you get the Zometa?

Wishing you the very best. Nausea is the worst - I'll take pain over nausea any day.

Carol

Edited to add that I'm Stage IV with mets to my bones. The Zometa is to help keep my bones strong.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Feb 12, 2021 12:33AM blue22 wrote:

Hi Carol,

Thank you for your reply! I'm expecting to get Zometa every 6 months, so that is not so bad. I think next time I will take something before going to bed. I also have a much harder time dealing with intense nausea than pain. Especially when you are reduced to sitting on the bathroom floor because it is so bad.

I talked to my clinic and am now taking Tylenol, Advil and Claritin and just a tiny bit of Ativan. I am feeling much better than before.

I'm really glad my MO warned me the side effects could be bad. I was really hoping for the best. Oh well.

Hopefully posts here will prepare others as well! I'm sorry to hear that you are having to take this for stage IV. I'm sure you must run into a ton of people who have no clue why you keep taking chemo or what stage IV is... I know even at stage III so many people have a wildly inaccurate rosy view of breast cancer.

Blue

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Feb 12, 2021 07:13AM finallyoverit wrote:

I asked my John’s Hopkins MO about this last week. He told me that I’ll have Zometa “forever” or until I refuse it, but that we can scale back from 4 times a year to 2. I’ve never had a reaction to it, but I’ll take the 2 less IVs a year. I get enough of those as it is. I know if he was not comfortable with changing my protocol, he wouldn’t have. As with everything, maybe the 4x a year regime was recommended when I started 4 years ago has changed. I’m ok with that.

Dx 10/2011, IDC, Stage IIA, 0/4 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone
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Feb 12, 2021 10:54AM LillyIsHere wrote:

My second Zometa infusion is coming next week and since I had a very difficult 24 hr after the infusion, I am not really looking forward. Looking on the bright side, I felt so much better after that 24hr.

A question for Ladies with bone mets, do you feel better 48hr after zometa infusion? Do you feel any difference?

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Feb 12, 2021 11:25AM finallyoverit wrote:

@LillyisHere ~ I’ve read where ladies do feel better after 48 hours. I don’t know firsthand. I’ve never had any sort of reaction to it.. I feel a little bit of a pity party for the day because I friggin hate the IV, but I’ve never had any sort of physical reaction to it. I hope your next infusion goes smoother.

Question ~ do they infuse over 15 or 30 min? I’ve always had it over 30 and I’ve read where that helps lesson side effects. Might be worth an ask if you received it over 15 min the last time

Dx 10/2011, IDC, Stage IIA, 0/4 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone
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Feb 12, 2021 11:37AM LillyIsHere wrote:

Thank you finallyover. I asked for 30min and I drank so much water before, during, and after the infusion that I was nervous if I had to use the bathroom while in infusion but lucky I was OK :). Someone mentioned that the second time it gets easier. Yes, I hate the IV so much and since starting letrozole I get bruises so easily.

Do you feel less bone pain from zometa?

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Feb 12, 2021 12:31PM Sunshine99 wrote:

Good morning, my fine ladies! :) Here's my experience with Zometa, so far. My infusion lasts about 30 minutes. I don't have a port so they warm my arm before they start the infusion. The nurse always asks me if I'm planning any major dental work due to the possibility of ONJ.

The SEs were the worst after the first infusion, especially at about 4 in the morning. By the time I was about 2 days out, I felt fine again. It may be because I get the infusions every month, that my SEs are really minimal now and my body is used to it. I highly recommend asking for some kind of anti-nausea med to take. (I also developed a bit of a fever the first time, but it wasn't high enough to call my MO.)

I think I took a Claritin the day before and the day of the second infusion. It may have helped, but it certainly didn't hurt. I actually forgot about the Claritin after that, but it's worth asking your MO about it (or maybe ask your infusion nurse).

I don't know that the Zometa infusion made my bones feel any better, but it's possible that it is keeping me from feeling worse.

I printed out a Med Fact Sheet on Zometa and gave it to my periodontist. I see her every three months for cleanings. She doesn't do anything invasive like extractions or implants, but I wanted her to have the information. She and my hygienist were really appreciative. I found the Med Fact Sheet on the Scripps Portal.

Hoping everyone has a good and safe Friday.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Feb 12, 2021 12:41PM LillyIsHere wrote:

Thank you for sharing your experience Sunshine. It gives me hope to feel better this time. Also, thank you for sharing the tip of warming the arm.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Feb 12, 2021 06:16PM blue22 wrote:

Hi All,

Posting this here in case it helps anyone in the future. I am now ~ 48 hours past my first infusion. I am much better than yesterday, but far from normal. Yesterday I could barely get out of bed. Today I have been able to move around a bit, and work from bed, but I haven't tried going for a walk and don't want to do that without someone in tow. I hope by tomorrow I will be much better. If I didn't have a job where I can WFH with the camera off, there is no way I could have done any work. I've been eating mush mostly (Bob's red mill MIghty something or other cereal..) supplemented with fruit. We think it looks like the food in the Matrix... but it works for when you are not feeling well! ; )

Good luck to future acid infusers!

Blue

p.s. Does anyone ever feel like the medication names come straight from a movie? Zoledronic Acid? Is that the stuff that drips from the Alien's mouths in Aliens? Or is that something in the IV when they make super heroes? AC definitely looks like something straight out of a Marvel movie.

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Feb 12, 2021 07:53PM Sunshine99 wrote:

blue22, you made me laugh about the medication names and descriptions. You are spot on!

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)

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