Anyone taken Fulvestrant and Kisqali together? Side effects?
Does any one have experience with fulvestrant injection together with kasqali tablets. I have just started on them last week and feel terribly nauseous and the skin , where my breast cancer has spread to, is also very painfully sore. Would be very interested to hear from someone else who have or have had theses meds.
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I have taken both for 4 1/2 years. Try taking the Kisqali at a different time of day, maybe at bedtime or after dinner. I take Tylenol and the allergy over-the-counter drug cetirizine (Zyrtec) for overall body soreness after Fulvestrant shots--a nurse gave me this tip! Often reactions to Kisqali calm down after a few doses. Stay in touch with your oncologist if they don't. Sometimes they will lower the dose if can be done safely. Blessings to you!
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1 ReactionThank you so much tessspike. Are you actually feeling reasonably normal after having taken them? Has your cancer reduced significantly ?? Has the tiredness and nausea stopped?? and how long did it take to feel better?? Paracetamol/tylenol unfortunately doesn't work for me. The Zyrtec sounds like a good idea for the soreness of my skin. Thank you so much again. To get feedback from someone who has gone through the same thing is so valuable. Wishing you all the best.
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1 Reaction@ginny100 "Reasonably normal" is a good definition. I am told I have no active cancer these days. Often the early weeks of Kisqali can cause a "flare" of symptoms and higher markers, but things usually settle down in 3-6 months. I don't have the energy I used to, but I am also older than you and I have to allow some aging to be part of the picture. I travel, enjoy friends and family, including the activities of 10 grandchildren! I consider myself so fortunate and am very thankful for the much longer, good life these drugs are supporting.
Tessspike, That is very good to hear. I am so pleased for you. Are you over the medication or do you still have to keep up the injections and tablets??
My grand children are unfortunately not near and my husband has dementia, so it is a bit of a struggle to keep the
morale up. Tanks again for your letting me know your story.
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1 ReactionI can only speak to the Kisqali. My oncologist took me off a few weeks ago due to severe headaches, nausea and vomiting. I handled active treatment well. Medicine management has been quite the struggle. My body does not handle them well. I am also on Letrozole which I can tolerate. My humble advise is be honest with your oncologist and look for solutions to find the best solution to ensure quality of life. All the best to you!!
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1 Reaction@ginny100 I am metastatic so it's a lifetime of Kisqali and Fulvestrant...or whatever comes next if the Kisqali stops doing such a good job. I also get Zometa infusions every 12 weeks, but I get to stop that at 5 years. I am sorry to read about your husband. Please take care of yourself as you care for him. I am long widowed but have friends in your boat.
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3 Reactions@ccc1965 Thanks for your response ccc1965. I have only been on Kisqali for two weeks but already am very nauseous, wondering if it is worth it???? Don't feel like eating at all!! I agree with you that quality of life is so important. How long did you manage to stay on Kisqali before they took you off it?? I was given opiates to handle pain and nausea but that was a disaster as it completely blocked me off (impaction they call it but it is constipation) and causing even more terrible pain. Did you try anything for the nausea??
Wishing you all success with your treatment.
Ginny, Here are the drugs I am on for nausea: olanzapine at bedtime
Takes Zofran as needed for nausea and prior to meals add Compazine if needed.
I believe I was on Kisqali for about a month. The headaches were awful and I wasn't able to function.
Best of luck!! Corey
@tessspike Hi again tessspike, I hope this is finding you well. I am also hoping to do some more travelling, so I am wondering if you manage to do that inbetween the fulvestrant injections or can they sometimes extend the period for the next injection??? I have daughters and granddaughters in England and hoping to be able to visit them there again when I feel better. May be for a longer period . All the best
Hi, Ginny! I am doing well...getting ready for a trip and glad I feel well enough to go! I hope your issues will subside and you can travel comfortably! My experience has been that my oncologist seems ok with an occasional change to my Kisqali or Zometa schedule, but the Fulvestrant is another question. She seems to want that happening every 28 days. A few days delay was acceptable when I had surgery, but otherwise we keep a tight schedule. I imagine your markers and scans may play into the decision. Hopefully you can schedule your wonderful trip in between? Let me know how you are doing. Take care!