Kisqali/ribociclib, Faslodex/fluvestrant & Xgeva combo - Anyone?
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I’ve noticed several members who take their Kisqali at night. I’m curious as to why choose night? The packaging says morning is preferable. I’m not judging. I’m just curious and wondering if that helps with side effects? I’ve not experienced a fever (I take mine in the morning). I have had occasional slight nausea and general malaise/no energy in the am, even before I take the meds. Fortunately that passes by mid morning. In this recent cycle (#5) I didn’t experience any of that, just itching, a rash on my trunk that moved to my face and the usual “off taste” and tender tongue.
Thanks!
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I have had 20 cycles of Kisqali/Faslodex/Xgeva for my bone only mets. From the beginning I've taken it after dinner so that any potential SEs would occur overnight. My only significant SE was GI problems which decreased slowly over a 3-4 month period. No paperwork I was given recommended that I take it at a particular time of day. Both my MO and the specialty pharmacist said to take it whenever it was easiest for me, but to try to take it at the same time every day so that it would become a routine.
I hope that this is an excellent line of treatment for all of us.
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I had to go on antibiotics to get rid of a chest infection at beginning of wk 2 and when I had my first 2-week checkup my neutrophils had dropped to 750 and my CPR was raised. Onc. has taken me off Kisqali for 3rd week and I'm having another blood test on Wednes to see if they've risen. I can't seem to shake off this infection, I'm still having paroxysms of coughing and I don't know if I should go back to gp and get more antibiotics. Does anyone know if antibiotics affect your neutrophils? I'm getting anxious that I won't be able to take kisqali.
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I have just gone onto anti-biotics for mouth infection after extraction. I will be interested to see the results of my bloodwork which will be taken next week. The really frustrating thing is that the anti-biotics knock me around far more than the femara/kisqali. It also means i am eating less than usual - onc will have kittens at the next weigh-in at centre.😱
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@malleemiss251, fingers crossed that your neutrophils don't drop too low. It'll be interesting to see how/if the infection+antibiotics have affected your bloodwork. Also interested in cacao and Lindt dark chocolate - how much do you take a day?
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Thanks @aoibheann, I take two tablespoons of cacao a day - I couldn't face Lindt dark chocolate every day. I either include it in my breakfast smoothie or I have it in some heated almond milk. It tastes, to me, like unsweetened cocoa. However, cacao can lead to crystals in the kidney/kidney stones - so you need to be alert to that possibility. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5835384/ I hope the link to the Lindt study works. I laughed when I first read it. But I can say as soon as I began taking the cacao, which is the main ingredient in the chocolate, my bloodwork improved nicely. Onc is very happy with improvement, particularly since Ribociclib can make such a mess of the Neutrophils. If link does not work you can search online using keywords lindt and neutrophils.
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Hi All,
Reminding you that we offer a free caregivers meetup for partners of someone with MBC every other Tuesday.If you are a caregiver, or have a partner who you think could benefit, please share. We meet today at 4pm, ET.
People need to here to participate:
https://breastcancer-org.zoom.us/meeting/register/tZ0rcuiqqj0vH9yFHXL9FE-RcoXHzWNjuwyW♥️ Thanks for sharing,
Your Mods0 -
Had my bloods done today and after 2 weeks on the reduced dose (400mg daily) my neutrophils have risen to 1.2 and my cancer markers have dropped from 240 eight weeks ago to 170 today. So it seems that Kisqali is beginning to work (fingers crossed). I still have nausea and am loosing weight. I feel tired and my brain fog is pretty bad. Hopefully this will all improve. I'm going to start taking cacao now to see if it'll improve my neutrophils.
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@aoibheann, I am glad your neutrophils have risen - good luck with the cacao. Excellent news about the markers. Members here have had success with the lower dose of kisqali. I think @kanga_roo was on a lower dose for years.
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@aoibheann, cacao seemed to help me through the anti-biotics - onc said she wouldn't have known I had taken anti-biotics from blood work and neutrophils 2.3. My usual bloodwork is not fasting, but three days after onc bloodwork I had fasting bloodwork done for gp - this was on 5th day of off week kisqali. My neutrophils had slipped to 1.6 - which I put down to not having cacao that day.
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Colibrigirl- Many take their cancer mets in the evening because it was shown awhile back that the vast majority of metastases happen at night- its under control of the nighttime signaling pathways/circadian rhythms…
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@malleemiss251, that's very interesting. I'm starting on cacao now and next bloods are in 2 weeks time so I'm hoping my neutrophils will react like yours and continue to rise.
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@cure-ious, that's interesting. I'm just on my first round of Kisqali, and I read that it's processed better through the liver in the morning. Definitely going to ask my onco.
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Hi- I was diagnosed with liver Mets a few weeks ago and starting kisqali and faslodex and could use some help understanding what's about to happen. My onc is acting like it will be similar to taking letrozole, which has had limited side effects for me. What else could happen? I work full time and worries a bit about brain fog. I saw potential issues with WBCs. Is there also an issue with anemia? And what is xgeva? Thanks for any info. I don't want to panic but I might be starting anyway!
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Thanks so much for that study. I have been on Kisqali/Faslodex/Xgeva for almost 2 years. I've always taken Kisqali in the evening, after dinner, as I found it easier to manage SEs at that time. Good to know that I may have been helping myself by doing that!
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Coffee-lover,
First, I’m sorry that you’ve been diagnosed with mets. It’s shocking and unnerving, especially if you are someone who likes to know that to expect (which sounds like you do). I can only share my 6 month experience on Kisqali/Faslodex/Xgeva, but for me the side effects have been manageable and have actually subsided some in the last 3 months. The first month was a bit rough - some queasiness (never full on nausea) first thing in the morning (almost like morning sickness), but Zofran knocked it down fast. My nutrafils dropped low after the first cycle of Kisqali, but waited a week and they came back up to a range the oncologist was comfortable with. My nutrafils are now just barely in the normal range, but remain stable. My WBC remains a bit low, but not overly concerning. I am careful in crowds and wear a mask in those situation and try to stay away from sick people as best I can. I also had some fatigue, but that too has diminished. I exercise regularly (walk and pilates) and I think that helps with all side effects. Some GI issues, but I already have mild irritable bowel syndrome. The most annoying side effect for me is really dry skin which results in itching and sometimes a little rash. My mets are only on my spine right now. I’m hoping the meds do their job and keep progression at bay. I hope this is helpful and I hope your body tolerates the drugs well. I also need to mention that I’m on the highest dose (660 mg) of Kisqali.
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Thank you @colibri_girl. I would feel more settled if I knew more but no way around it. My insurance doesn't specifically say it covers faslodex which has hubby freaked out. It's $2k a week yikes! EKG on Mon and treatment starts on Thurs. I've been on letrozole for 8 years. I had so.e side effects at the start and they mostly settled down. I'm going to assume this next rounds acts the same.
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Hello all - I have my first dose of fluvestrant on Thurs afternoon and then start taking the kisqali. How did you all feel after that first dose? I'm trying to figure out if I should take fri off or if I should wait and see.
Any insight is appreciated.
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People are all different, of course, but most handle it quite well!! Looking forward to others chiming in!!
We're thinking of you @coffee-lover !!
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@coffee-lover I’m on 2nd dose with no issues. Everyone react differently
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Just had my 7th dose and I’ve had no noticeable reactions other than stinky pee for a few days.
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Thanks. I got ins approval yesterday so ready to go. Or as ready as I'm gonna be.
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Hello I need help. My insurance denied Truqap. Can someone knows how I can get it for free?
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I'm not from the US so unfortunately I won't be able to help @fighter00 , but there are many resources here that I came across that guides patients on how to get financial cover for their medications. Best of luck, it's not easy to navigate the diagnosis, the treatment and also have to worry about the price tag! It should be fully covered for all :(
I have a question…I am on Kisqali + Faslodex + xgeva + zoladex, I know lower back pain is a side effect to hormonal treatment in general, any advise on how to deal with it? Make it better? Anything other than taking pain killers…
Thanks!
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@radiation_cinderella, a heating pad helps my lower back pain a bit, although I’m not certain if my discomfort (not at a high pain level) is from the hormonal treatment or the lesions on my spine. I’ll be interested to read comments from others. I hope you find some relief.
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Same here @colibri_girl, I'm not sure if it's the medication or the lesions but the PET/CT showed 'almost complete remission' so I'm guessing it's the meds. The problem with the heating pad is that I'm still suffering from hot flashes and night sweats and it's already summer in Egypt where I am so I'm a bit hesitant to try it out now….
Also looking forward to hearing from others as well. Thank you <3
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@radiation_cinderella Congratulations on the remission! May it last for a long long time. I have a dull ache across my lower back and hip bones. With the ok from my oncologist, I do reformer pilates twice a week and gentle yoga (at my community cancer center) once a week which I hope strengthen and stretch the supporting muscles in that area. I have no idea how long I'll be able to do these exercises since I have 10+ bone mets but here's hoping.
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@tougholdcrow Thank you :) I'm keeping my fingers crossed for my next PET/CT in July that it turns out as good as that one! My oncologist also told me to do pilates and yoga but we lack expertise in Egypt when it comes to specialized care and exercise so I will try my luck in a nearby gym, I hope they help out and you see your mets completely gone <3
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@radiation_cinderella, if you are looking for pain relief from the side effects, as well as relief from the hot flashes, talk to your doctor about Cymbalta (duloxetine). It is primarily approved as an anti-depressant, but also works for neuropathy pain and is used off label to treat hot flashes associated with menopause. My wife's oncologist prescribed it to her about 8 months ago and the hot flashes went away the first day she took it and have no returned. It also greatly, though doesn't quite eliminate, the joint pain she was having from the estrogen deprivation. I believe it's readily available and cheap. Won't hurt to give it a try. One possible downside is that it either tends to make people sleepy or awake. So it might help you sleep or keep you awake. For my wife it tends to keep her awake. Since she suffers from insomnia and takes Ambien for that, it's the only side effect she doesn't like.
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