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Kisqali/ribociclib, Faslodex/fluvestrant & Xgeva combo - Anyone?

nopink2019
nopink2019 Member Posts: 384

I've been on this combo since Nov 2019. Since all treatment combos seem to offer their own side effects and challenges, I'd like to hear from others taking these drugs. Especially your experiences, duration of success and how you deal with the fatigue, itchiness, etc that goes along with this treatment.

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Comments

  • nopink2019
    nopink2019 Member Posts: 384

    no one?

  • tangandchris
    tangandchris Member Posts: 934

    Hi nopink!


    I found it. I haven't officially started but I'd love to hear your experience


  • nopink2019
    nopink2019 Member Posts: 384

    MO chose Kisqali over Ibrance, can't remember why. You always start with 3 pills/day (21 days on, 7 off, repeat). After 2-3 cycles my MO switched me to 2 pills/day as I had nausea, skin rash & other stuff I've forgotten. She said efficacy is about same. I've handled it pretty well. Minor things - cough (too much phelm, resolved w/cough drops frequently) some minor rashy skin, slight constipation and cyclical tiredness. Lots of fatigue starting w/week 3 of drug. MO prescribed ritalin to be taken for 7-10 days/month to combat that. Works! Last scans were May. Since then, blood work good and I've been rocking along well. Repeat scan in a couple of weeks to see if meds still working. There are lots of suggestions about fluvestrant on that thread. My best find was to walk around the parking lot immediately following injections for 15 minutes rubbing the injection sites. Moves the "syrup" around and prevents soreness for me.

    Good luck, let me know how it goes.

  • tangandchris
    tangandchris Member Posts: 934

    So not much of joint or muscle pain?

  • nopink2019
    nopink2019 Member Posts: 384

    Some back pain early on, but much better since lowering dosage. Used tylenol, NSAIDs & lidocaine patches. Helped when I started going to water aerobics, but that ended with COVID shutdown. When I walk daily, I feel better, just hard to motivate myself.

  • tangandchris
    tangandchris Member Posts: 934

    I had my first dose of Faslodex and Kisqali a few hours ago. I started to feel a little panicky when I went nack to the infusion room, but I just told myself its only a shot.

    Shots were tolerable and so far so good. Anyone else out there?

  • nopink2019
    nopink2019 Member Posts: 384

    Glad 1st shots are behind you. Anticipation is hard. Did you also get xgeva shot? Hope kisqali treats you well. SE might change over the weeks, so note what/when so you can discuss specifics with MO. My scans this week were stable and blood work good! I just continue cycle for couple of months.

  • tangandchris
    tangandchris Member Posts: 934

    I have a bone density this Friday, so I assume after that I get Xgeva or something like it. I could be wrong, how does that work?

    Can you tell me how yout SE",s have changed and how long till you had any?

    I'm mostly worried about fatigue and joint/back pain.

  • nopink2019
    nopink2019 Member Posts: 384
    MO didn't order bone density, just started xgeva when I started fluvestrant. But PCP did request one last month as it had been a while. I'm not ostepenia, so xgeva seems to be offsetting the down side of fluvestrant.
    I keep a notebook with dated notes of side effects, questions for MO & notes from medical visits. 1st rounds of Kisqali I had back ache, mild nausea, skin sores on back & torso, cough, starting 1st day of cycle and better week off Kisqali. MO changed from 600mg/day to 400mg/day starting on 3rd round. I've been on this dosage since Feb 2020. Body aches & nausea went away. I started Lexapro for depression and ritalin for extreme fatigue during 3rd week as Kisqali builds up. Skin sores are less, sometimes I take benadryl. Cough is always there, caused by thick phlegm. Suck lots of cough drops and take swigs of expectorant. Depression is worsened by covid as I wonder when I'll be able to see friends, family & travel. Trying to buck it up!
    Good luck and let me know how it goes.
  • tangandchris
    tangandchris Member Posts: 934

    Well one week down and nothing too unbearable to report. I have noticed some kidney pain and wonder if it's connected.

    Having a rough night emotionally rather than physically. Just overwhelmed with the weight of my new reality.

    Thanks for your info on the meds!

  • nopink2019
    nopink2019 Member Posts: 384

    tangandchris - this month's visit was easy, just labs & injections, continue on Kisqali. Next month I'll do all that and consult w/MO about trends in bloodwork. It will take a few months before you have scans again to see how your meds are helping you. Chin up!

  • tangandchris
    tangandchris Member Posts: 934

    Hi Nopink!

    MO actually wants to rescan after this cycle. He said he's anxious to scan since there was a delay between dx and starting treatment.



  • nopink2019
    nopink2019 Member Posts: 384

    I'm so lethargic mid afternoon that I crawl in bed for hours. Then I'm depressed rest of the day because I did nothing. Initially I took Kisqali at bedtime, but switched to noon as my stomach seemed upset all night. When do you take it and have you experimented with times to find what worked for you?

  • tangandchris
    tangandchris Member Posts: 934

    I'm going to try taking mine in the morning next cycle. I too am having major stomach issues at night. I have tried waiting an hour after dinner to take it and that seems to help. Also i started taking Beano and that has helped the gas issue. MO called in an antacid that helped the horrible reflux that was happening.

    I'm worried about the fatigue being an issue for me taking it early. But the stomach issues are really making me miserable.

  • nopink2019
    nopink2019 Member Posts: 384

    After a year of Miralax 2-3 times a week to regulate, in the last 2 weeks (before I switched to taking Kisqali in the evening) I've developed diarrhea. I think I started taking it at bedtime, then switched to noon. Back to night this cycle, but trying to remember to take right after dinner so I've got food on stomach. Also put vitamins earlier in the day so I don't overwhelm my stomach w/drugs all at once. What a boring thing to have to schedule!
  • tangandchris
    tangandchris Member Posts: 934

    I really cannot believe there are so few posting that are on this combo.

    I started having pins and needles sensation last week. It's on my back, my butt and then my legs. I also feel it on my arms from my shoulders down.

    It comes and goes, but seems to really flare up when I'm active.

    MO had me come in for bloodwork. She said a b12 and a Mylan panel. I'm sure I'm not spelling that correctly.

    Has anyone encountered this before?

  • LindaSueH
    LindaSueH Member Posts: 14

    I have done my first month. Kisqali was lowered to two pills with the Femara. My fatigue is horrible, my liver enzymes are very elevated so I am off Kisqali until next blood draw on Tuesday. I am struggling to keep up the full time job... anyone else struggling with this? I get low grade fevers and my body just aches. Ugggg please tell me this will get better

  • nopink2019
    nopink2019 Member Posts: 384

    I've had pins & needles, but not too much pain. Dropped from 3 pills to 2 after 1st month. Lots of fatigue. Moved Kisqali to bedtime and I seem somewhat better. Monthly bloodwork was ok, but 2 new spots showed up in liver on last CT. Had another blood draw, I assume for liquid biopsy to try to get more definition on what is making the tumors grow. Won't know anything until I see MO in 2 weeks. But she did say might indicate a change in meds.
  • tangandchris
    tangandchris Member Posts: 934

    I'm still on 3 a day here. My fatigue is for sure an issue. I'm on leave for work and concerned about getting thru the day without a nap.

    I'm switching MO's in a week so there could be some tweaks coming to my meds. My bloodwork came back normal in regard to the pins and needles. This must mean it's a SE. it's worse when I get hot or move around alot.


  • nopink2019
    nopink2019 Member Posts: 384

    After 6-9 months of Kisqali I noticed alot of hair falling out and thin spots. MO ok'd trying Biotin. I've taken it now for about 3 months and can see new hair growth all over, especially in my part and front hair line. Last night I was speaking with two friends and one had tried it without any noticable change. The other used to manage drug trials. She speculated that it didn't help my friend who was losing hair due to normal aging, but that maybe it helped me because I was losing hair due to a side effect of the drug. Could be I'm lucky, but if you notice this problem, get a bottle and try it.

  • Partyoffive
    Partyoffive Member Posts: 53



    Hi all

    I will be starting this combo in two weeks-I’m going away this week and didn’t want to start before we left the country. I was stable on Tamoxifen for 61/2 yrs started ibrance when my tm’s started going up last year but my PET’s have been stable but tm’s continued up so onc wants to try this combo. I went and got a 2nd opinion and that onc said he doesn’t even look at tm’s and just uses scans and absolutely would not change meds especially since my scans have been stable no evidence of metastatic disease the report says but my onc said he had my scans from last year compared to this year and bone tumors look bigger. I’ve switched once based on a subjective finding and am still debating moving on to this combo so you may find me here in a couple weeks.

    Kristin

  • nola70115
    nola70115 Member Posts: 61

    Hi all. I’ve just been prescribed Kisqali and Femara. Can anybody share what you pay after insurance? I have BCBS PPOand I’m curious about what to expect.

  • nopink2019
    nopink2019 Member Posts: 384

    I started Kisqali (not in combo w/Femara, I get Fasolodex shots) when I had crappy Molina individual ins. 1st dose came free from Novartis intro-thing. Next doses were $520/mo as I had met my deductible for the year. If income for couple is <$100k (at least that's what they told me about Medicare) Novartis has supplemental support available, don't know details. This drug has to be sent via FedEx, not picked up, typically. I found CVS Speciality Pharmacy (sent there by WalMart) and Alliance Rx a pain to work with. Changed ins when I hit medicare age and Walgreens Community Pharmacy has been much easier to deal with. Walgreens checked w/Novartis for me about reducing cost, but if you can't get them to do it, check it out yourself. I got another month free when 2021 started. Medicare drug cost is very different from PPO. Maybe someone w/BCBS can give you more accurate advice.

  • nopink2019
    nopink2019 Member Posts: 384

    My latest CT scan showed new lesions on liver, so off CDK4/6 inhibitor (Kisqali) and on to mTOR inhibitor (Afinitor). Best to you all.

  • jsniffs
    jsniffs Member Posts: 136

    Bumping to see if anyone else is currently on this combo and/or had good experience with this combo? I just started Faslodex and am looking to add Kisqali or Ibrance (trying to figure out which one I should push for). Based on the small number of posts on this thread, it seems like adding Kisqali is not a super common addition to Faslodex. Thanks for any insight.

  • tangandchris
    tangandchris Member Posts: 934

    I'm still on this combo and had good results. I'm showing tumors have shrunk and no new disease. I was supposed to be put on Ibrance and Faslodex, but my insurance said it had to be K8sqali.

  • jsniffs
    jsniffs Member Posts: 136

    Thank you tangandchris for the info! Great to hear you are doing well.

  • bright55
    bright55 Member Posts: 146

    hi Jsniffs

    Good combo for me

    I live in Australia lucky to get acess to Kisquali and Faslodex combo on government PBS so minimal payment

    Have been on combo since sept last year

    Latest C T was .Stable....no progression and minor reduction with lung pleural sites

    So all good as only m I nimal side effect of hair thinning

    Bright in hope

  • ncyogi
    ncyogi Member Posts: 45

    Hello all! New to this world (de novo stage IV- 1 bone met) & Ijust got my first faslodex shot yesterday (along with zolodex bc I’m premenopausal). I’m starting Kisqali as soon as insurance approves & I’m assuming that will be next week.

    I’m very nervous/sad/in shock about all of it but trying to stay away from the “dark side”. My biggest concern right now is QOL. My hips are super sore from the injections & I think the stress of all of it has worn me out.

    Can you amazing ladies give me some advice on side effect expectations & ways to overcome? I’m so inspired by so many of you & have read & reread some of the posts. They give me strength & hope. xo

  • jsniffs
    jsniffs Member Posts: 136

    Hi NCYogi - Hang in there! I've been at this MBC thing for a few years now, staying fairly upbeat. I just started Faslodex as well, and those shots brought me down too. I think it was the pain and the hormonal effect. Luckily, a few days later, I felt back to "normal." Hopefully once we get past the initial loading doses, things will kind of equalize out. Sometimes just being patient and knowing that side effects will likely improve over time on new meds can help a lot (at least it has for me). Hugs to you!