Tips for Switching Breast Cancer Treatments

Same here joint and bone pain

I switched from Kisqali to Verzenio I found Kisqali much easier to tolerate. Some joint pain and fatigue but no digestive issues

I will be getting my 3rd shots of faslodex (fluvestrant) this week (taking with Ibrance). They are big shots - walking helps work out the 'knot / lump' from the shot. Side effects: So far mostly digestive problems, 'hot flashes', and fatigue. Subscribed Immodoum for stomach, I keep gel ice packs on hand, berry pops in freezer, and drink refrigerated water; oncology nurse said if hot flashes get extreme they can prescribe meds. Side effects seem to be worse for first several days then start to gets better.

I’m just starting Zometa myself in 2 weeks. But I’ve been on Kisqali for several months and am feeling really good. I get low blood counts (wbc and anc) but I don’t feel that and we just monitor to make sure they don’t get too low. I hope this is a good change for you!

Thank you! Hope you continue to feel well!

I have had NO side effects from my Zometa infusion that I get every 3 months. I have been receiving this infusion for a year. I am advanced metastatic stage IV. Twelve years ago I was treated for Stage II with surgery/chemo/radiation and then Tamoxifen and Letrozole.for 7 years. The letrozole caused significant bone/joint pain. Zometa, for me has NO side affects. -g

That is great to hear! I had a similar treatment plan and the letrozole also caused joint pain.

I'm on ibrance and letrozole for 3 wks then, I wk off and had been keeping my inflammatory breast cancer in CK. Until just recently when my medication didn't come for a whole month and my cancer started to come back and even occur in my other breast and doctor said it shouldn't come back so soon. I'm on it again and still have delivery problems from Minnesota to Maui ... Lost in the mail. Trying to work w/ the company but still have scares when no one can answer why even if my doctor's office orders. Dr. doesn't feel it will return but I see and feel it's in the breast that originally wasn't affected. I have pairs and redness and wrinkly skin that shows it's there. But when I get my ibrance and take it immediately , it seems to work right away. It's extremely expensive and my doctor helped me get a grant to pay my portion of $400 per month that needs to be renewed every year, but still feel worried it's delivery in time isn't consistent especially around holiday time when PO gets back logged and shortage of delivery workers. It's always a worry for me . I've spoken to ibrance quality control but don't get an expert who can solve the problem. Is love to hear from anyone who may have the same problem. I live on Maui in Hawaii and seems it gets sent to Oahu first. Still working on it!!!

Be careful of Xgeva. I got osteonecrosis from it. Make sure you let your dentist know you were/ are taking it.

The fulvestrant must be given very slowly, over 5 minutes. If it is given slowly, it should not hurt. It will usually dissipate before your next treatment. I would watch the clock and tell the nurse to slow down if it started to hurt. 5 minutes per side, 10 minutes total. It feels like a very long time. If you develop a lump that hasn't gone by your next treatment, ask the nurse to avoid that spot. I used a vibrating massager on the lumps to help dissipate them, too.

I take zometa and fulvestrant monthly. I haven't had any side effects with either of those.

Mona, what happened for you to get osteonecrosis?

Hey and hru? I hope it works for you cause I have an appointment tomorrow to talk about switching doctors all together as well

Pray. I hope Kisqali works for you. I was on Verzinio for 2 yrs . Hated it made me so sick

I have been on Kisqali for almost 3 years. I had more side effects from Letrozole than Kisqali-bad joint and bone pain. My oncologist switched me to anastrozole in January this year and it has made a HUGE difference.

Yes Mona, I’d like to know more about the osteonecrosisi from the XGEVA injection! The nurse always asks if I’ve had dental work done in the past 8 weeks, or if I’m going to be having dental work done in the next upcoming 8 wks. What exactly is osteonecrosis, and what does it do? Thank you!💕

Donna Lee B, go to the Ibrance website and apply for a prescription co-pay assistance card. It's easy and quick. It helped me with a zero co-pay for a year. Then, my insurance kicked in.

I was diagnosed with MBC in 2019 and have been on several chemo drugs. I’m on palliative care and when one drug stops working, I’m put on another. My concern is that I was on Xometa for my bones over three years and developed osteonecrosis in my jaw. It was recommended that I do hyperbaric oxygen therapy, 30 treatments of two hours each, debridement by an oral surgeon, plus ten more HBOT treatments. My insurance covered the HBOT, but not the oral surgeon. The debridement didn’t work, so the oral surgeon wants to redo the surgery and charge me again. It upsets me that since the chemo caused this, my insurance Won’t cover it. Whenever I hear that someone is taking a bisphosphinate, I want to warn them about the side effects.

I have been on Kisqali and Letrozole since June 2024. So far, a little achy, but well tolerated.

Make sure the fulvestrant is given properly

Taking kisqali wasn't to bad. Flovesterant is 2 injections never knew which side would feel fine and which would sting and burn and zolmeta do get a metallic taste in my mouth and little nausea which isn't as bad when they slow down the infusion

I was on Xometa for over three years and one of the side effects was osteonecrosis in my jaw (bone death). When I told my oncologist that I had pain in my jaw and I was going to see my dentist, he gave me a letter for the dentist to sign saying it wasn’t osteonecrosis. My dentist wouldn’t sign it and he sent me to an oral surgeon ( who wouldn’t sign it either); he sent me for 30 treatments of hyperbaric oxygen after which he would do a debridement, followed by 10 more hyperbaric oxygen treatments. During my treatments, which were easy, I met people who also had osteonecrosis which may have been caused by chemo done several years ago. The surgery didn’t work so I had it redone this week. I’m praying it works this time🙏🏻. All I can say is to ask your oncologist how long you need to be on Xometa. I think I was on it too long. I also have been taking the fulvestrant shots for over 3 years. I have no side effects, just lumps; I do have night sweats on occasion, and a chemical odor in my urine. I asked my dr. about it and he said it had to do with how my body metabolizes it.

Been on zometa for about 2yrs. Went through tmj surgeries for top and bottom jaw at 15 and 16. I will ask my oncologist next month how long I need to be on zometa

I've found that *Paxel 20mg* (low dose anti-depressant)-completely- relieved my hot flashes. Ask about this and see if it works for anyone else suffering with hotbflashes as a side effect. Give it at least 30 days to work. Once it kicked in for me ~ I've never had another h.f. Such a Godsend! (My gyne recommended this med for hot flashes, btw).

I take Zometa and really have no issues to speak of.