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Topic: Zometa - What was your experience?

Forum: Bone Health and Bone Loss —

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

Posted on: Nov 2, 2020 03:25PM

Miriandra wrote:

My last bone scan showed mid-level osteopenia, and my doc recommended Zometa. I was lucky enough that my cancer seems to have been caught by my mastectomy - no chemo or rads. I'm on anastrozole just to be safe.

Most of the other Zometa threads seem to be for very complex cases where the posters are juggling many conditions and meds. What are the experiences of people who are only undergoing Zometa? Did it lay you out for a long time, or did you barely notice? My doc warned about flu-like symptoms ( 0_0 ) for a few days, but these are often helped by taking Claratin for a few days before the treatment.

Thank you for your insights and thoughts!

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Nov 2, 2020 03:45PM FarAwayToo wrote:

Hi Miriandra, I am going for my 5th infusion tomorrow. I'm getting them every 6 months.

I never had any issues with it. I know you are more likely to experience flu like symptoms with your first infusion, but I never had any. I read here to request it to be run over 30 min (standard is 15 min), and my nurses always complied. I also make sure I am well hydrated the day before and of the infusion, as Zometa is excreted through the kidneys. In fact, they will check your kidney function (via blood test) prior to the infusion.

I am yet to get my follow up bone density test to see if 2 years/4 infusions that I had helped. However, there is potential some slight benefit to recurrence free survival in Zometa users. (I can attach links to studies if you are interested)

Good luck with your treatment!

P.S. we are practically neighbors :)

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/22/2018 Zoladex (goserelin) Surgery 2/27/2018 Mastectomy: Left, Right Surgery 2/27/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/4/2018 Femara (letrozole) Surgery 8/20/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Nov 2, 2020 04:17PM Sunshine99 wrote:

Hi Miri. I'm Stage IV and am getting Zometa infusions once a month. I have mets to my bones and am taking Ibrance and Arimidex.

The first two infusions of Zometa were followed by a slight fever, and a very slight feeling of "yuck". After those two, I took Claritin for the day before, of and after the infusion and I felt better. I've had six infusions so far. I think I had a slight fever after the last infusion, but overall, it's not been difficult at all. I asked my MO about taking the Claritin, and she said "Why not?"

I hope it goes well for you.

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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Nov 2, 2020 08:51PM MinusTwo wrote:

I saw my MO for yearly check today and discussed bone health. He said stick with Prolia for now - or maybe Reclast. His recommendation is that Zometa is for bone mets - which matches with what Sunshine says. He recommended I go see an endocrinologist that specializes in bone health.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 2, 2020 09:21PM OCDAmy wrote:

I’ve had two infusions of zometa and had no side effects at all!

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast
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Nov 2, 2020 09:33PM LillyIsHere wrote:

I am on letrozole for 11 months now. I took my first Zometa infusion in August. MO suggested getting Zometa 2xYr for 3 years since it shows to reduce recurrence. My bones were normal before starting letrozole but who knows after 11 months? Still, the recommendation was for recurrence benefit even in a very small percentage. I had flu-like symptoms the second day after infusion that lasted 24 hr. and I was fine after that.

“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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Nov 3, 2020 06:39AM bravepoint wrote:

I did 6 Zometa infusions over 3 years. My MO like LillyIsHere's felt that it reduced recurrence and spread to bones. I felt awful for 24 hours after my first infusion but nothing after the next 5. A bone scan part way through showed no change from the one done prior to starting Exemestane. I go for a bone scan every 2 years now.

Gail Radiation Therapy 4/17/2016 Whole-breast: Breast, Lymph nodes, Chest wall Dx 8/8/2016, IDC, Right, 1cm, Stage IIA, Grade 3, 1/5 nodes, ER+/PR-, HER2- Surgery 8/29/2016 Chemotherapy 10/6/2016 AC + T (Taxol)
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Nov 10, 2020 06:45PM Miriandra wrote:

Thank you all for your input and ideas. You gave me some good questions to ask my doc about.

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Nov 10, 2020 07:28PM MinusTwo wrote:

I do have an appointment with the bone endocrinologist the end of the month. I'll post any "exciting" news I hear from her.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 10, 2020 09:12PM ABC4978 wrote:

Just recently told I have bone bets.. I have not started any treatment other than Zometa. MO said once a month, my next one is 11/16. First infusion went fine however the next day I felt like I got hit by a truck and it lasted for 2 days! every bone in my body hurt some even sensitive to touch. I ended up staying in bed on a heating pad.. later I started with the chills so bad I couldnt stop shaking which lead to a super hot shower to get rid of that.. My experience was terrible !

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Nov 11, 2020 09:55PM Sunshine99 wrote:

Hi ABC, I hope they get progressively better for you. I know mine did and I really hope yours do, also.

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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Nov 11, 2020 10:09PM ABC4978 wrote:

sunshine99 How many have you had? I've read increasing hydration helps? Maybe Ill drink pedialyte before my next treatment! One of worries is the dentist and zometa..

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Nov 12, 2020 02:00PM Sunshine99 wrote:

ABC, I've had seven infusions so far. I keep a spreadsheet to track my infusions and the side effects. For the first infusion, I had nausea (pretty bad) and a fever for a few days, Infusion #2, I had mild nausea and a slight fever. My MO did give me a prescription for Compazine (or whatever its generic is). I haven't used it since the 2nd infusion.

I also haven't taken the Claritin since the second infusion, and I don't remember drinking any extra water, but it certainly can't hurt.

The Zometa infusion nurse ALWAYS asks me if I have had or am going to have any dental work (cleanings don't count), since osteonecrosis of the jaw (ONJ) is a potential side effect. I did take a print out of the Zometa mediation to my dentist, just so that they would know.

I'm really hoping that it gets better for you. I was seriously dreading having to do this every month, but it turned out to be a sort of non-event, thankfully.

(((hugs)))

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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Nov 12, 2020 11:47PM ABC4978 wrote:

Sunshine99.. I'm taking claritin daily for other reasons so maybe that will be helpful 😊 although I'm not happy about the pain from last time I feel better equipt this time to handle it. I'll keep pain meds going and keep fluids down... hoping this will give me relief.

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Nov 23, 2020 06:58AM Still-me40 wrote:

I had a zometa infusion on Friday and I spent the whole weekend in bed with nausea, chills and muscle/bone and joint pain. For me it was just awful, I can’t believe the nurses told me “mild flu like symptoms” I couldn’t get out of bed!!

Just posting so that others who get it don’t freak out if they feel like crap afterwards.

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Nov 23, 2020 09:04AM ABC4978 wrote:

still me 40: I had my 2nd infusion and was unafraid to not take pain meds as the 1st infusion was terrible for me.

I started pain meds day of every 2 hrs switching between Ibuprofen and a half of my percocet 10 and stayed on that regiment for 3 days.. I even set alarms for the night to keep them consistent then slowly came off and still experience some pain but was manageable.

So sorry you have to deal with this.. hope this helps


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Nov 23, 2020 10:58AM Lexica wrote:

I had my first Zometa infusion last Wednesday (MO switched me from Prolia recently...) and it definitely knocked me out for just shy of 48 hours. I had chills and muscle aches, nausea and no appetite. They did warn me, but I didn't think it would be as bad as it was. I would say moderate flu-like symptoms for me because I could barely move from the couch, but didn't have a fever. I will make sure to take tylenol after my next infusion!

Diagnosed at 34. 2 years of Ibrance via PALLAS trial (ends 4/2020) Dx 7/2017, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- (IHC) Surgery 12/14/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Dx 12/27/2017, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 5/11 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/15/2018 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Aromasin (exemestane)
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Nov 23, 2020 08:09PM - edited Nov 23, 2020 08:10PM by KBL

ABC, my first infusion sounds just like you described. My oncologist thought it would be better to have the infusion over an hour instead of a half hour. I also read about taking Claritin the night before, the day of, and the day after. And I take Tylenol the night before and day of. I've had no more side effects other than the first time.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Dec 7, 2020 01:05AM - edited Dec 7, 2020 10:23AM by ijl

your case sounds very similar to mine: no chemo , no radiation just anastrazole.

I have a mild case of osteopenia and was prescribed Zameta. I only had one infusion so far and had bad experience with it. I had a bit of fever which I was warned about. But in a few days I developed eye scleritis which was a bit scary. Apparently it is a less known side effect . I am not sure I want to get another one. In fact I am having an appointment with a Stanford endocrinologist who specializes in bone health to talk about this.

I heard that Prolia could be gentler but I am not sure.

I might just do nothing for year and do a bone scan then.


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Dec 14, 2020 10:04PM LillyIsHere wrote:

his is what I received when I had Zometa 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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Mar 2, 2021 11:42PM LillyIsHere wrote:

I had the second Zometa infusion 2 weeks ago and I had milder after-infusion symptoms than the first time. Also, I felt great, same as before BC diagnosis after 10 days of 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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Mar 3, 2021 07:37PM typhoon wrote:

I'm getting my first infusion of Zometa tomorrow (my DEXA scan showed that I'm on the edge of osteoporosis, which won't be helped by the Arimidex I'm also taking, so my MO prescribed Zometa every six months). I greatly appreciate all of the information you ladies have shared!

Dx 10/23/2020, DCIS/IDC, Both breasts, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 12/9/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 1/14/2021 Arimidex (anastrozole)
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Mar 3, 2021 10:49PM Miriandra wrote:

Good luck Typhoon! Please let us know how it goes. Lilly, I take hope from your great long-term results.

My dentist did an updated panoramic x-ray to get a baseline for my jaw bones. (Looked good, as far as he said.) I have my first infusion scheduled for April 5th. I've taken a few days off work, just in case it's a bit rough.

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Mar 3, 2021 11:40PM LillyIsHere wrote:

Don't worry if the first time is a bit difficult, the second time it is much easier. My theory is that Zometa used every 6 months has lower risk of developing Osteonecrosis Of The Jaw comparing with monthly 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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Mar 4, 2021 12:14AM blue22 wrote:

I had my first Zometa infusion a few weeks ago. I felt fine immediately afterwards, and made sure I was really hydrated both before and after.

I woke up at 2 am with chills and could barely move. I tried to go downstairs and make a tea, but got really sick to my stomach and ended up on the bathroom floor thinking I was going to throw up. I took an Ativan and went back to sleep. I was unable to function at all the entire day and could barely eat anything or get out of bed. At some point I talked to my Drs. office and they suggested Advil and Tylenol and also prescribed Zofran. By the morning of the next day I was able to sit in bed and work a bit, and by the afternoon I was walking on the treadmill holding on to the handlebar so I could get in some activity. I was still nauseas for a few days afterwards but could mostly return to normal.

It was not fun, but doable. Just be ready for it.

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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Mar 4, 2021 02:21AM Hopfull2 wrote:

d my first Zometa infusion in January. I’m due for it every 3 months. I had zero side effects.

E🌺41yes.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/7/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 9/7/2020 External: Bone Targeted Therapy 1/19/2021 Verzenio Hormonal Therapy Zoladex (goserelin) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Bone, Brain
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Mar 4, 2021 12:30PM Miriandra wrote:

My doc recommended Claritin the day before, the day of, and maybe the day after. She said that can help the body adjust too. Did anyone else try that?

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Mar 5, 2021 05:01AM typhoon wrote:

So I had my first Zometa infusion yesterday morning. The infusion took about 45 minutes, and was completely free of any kind of reaction. I went back to work for the rest of the day, feeling fine. I was a little more tired than normal last night, so went to bed about 9 pm. The freight train described by blue22 hit me about 2 o'clock this morning. Woke myself up shivering, every bone and joint hurt, barely made it down to the kitchen before throwing up, etc., etc. I ended up drinking hot water with lemon, took a hot bath, and fell back asleep in front of the fire. Woke up again at 4:30, still nauseous and in pain; took two Advil, and that seems to have done the trick. I'm still weak and shaky, but the Advil addressed the bone/joint pain and the nausea, and I'm back in front of the fire, drinking coffee. Very glad that I took today off from work, and hope that the worst of the reaction is over with.

Once again, thank you all for sharing your experiences. When the reaction hit, I knew what was happening and was prepared to deal with it, and that is a wonderful gift that you ladies gave me.

Dx 10/23/2020, DCIS/IDC, Both breasts, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 12/9/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 1/14/2021 Arimidex (anastrozole)
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Mar 5, 2021 07:37AM KBL wrote:

Typhoon, I’m glad you’re feeling a little better. I didn’t move out of bed for three days except to go to the bathroom. I haven’t had any issues since. I did six treatments of once a month and have now moved to once every three months. I hope you feel better today.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Mar 6, 2021 01:40PM typhoon wrote:

KBL, thank you! Yesterday was a loss, spent most of the day in bed, but woke up today feeling perfectly normal (and very hungry). Fingers crossed that I'll follow your example when it comes to future infusions.

Dx 10/23/2020, DCIS/IDC, Both breasts, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 12/9/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 1/14/2021 Arimidex (anastrozole)
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Mar 6, 2021 02:20PM KBL wrote:

That’s awesome. One day is not too bad. I’m glad you’re feeling better.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)

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