Ibrance (Palbociclib)
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I also still work and drive, so I'm very careful about anything I take for sleep or for pain. Low dose to start anything new!
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brutersmom, call your insurance company and explain your issue. They can do a one-time override and get your refill dates in line (my husband owned a pharmacy, and we never had a problem doing that for people). The pharmacist who told you it was controlled was just guessing why they wouldn't let him refill it early, which is never a good thing. You need your pharmacist to help you, not lie to you!
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Ciaci - Always helpful to have someone with knowledge like yourself help with pharmacy concerns. I wonder if it was a pharmacy tech rather than a pharmacist that told her that it was a controlled substance? If it was a tech, I think she should let the pharmacist know. Also, I am glad that you still are on the Ibrance thread. You still are not only a resource for those of us currently on Ibrance but we also want to continue to know how you are doing.
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Dancemom-Good luck with your new treatment. I hope that Verzenio is easier on your body.
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Thanks for the suggestions. I called the insurance company. Letrozole will be available 10 days before I run out now. I need to keep taking it but I am not sure I want to. I have gone from sleeping eight hours a night to 2 hours in less then a week. The ibrance side effects are much less on 100 mg. The problem is I can't focus. I feel like I am going crazy. This feeling is beyond melatonin for sleep, yoga, deep breathing, exercise etc. My mood swings are awful. I tried reaching out to my care team early this morning but they did not return the call today. I am sure this is from the letrozole. I feel like it has taken over my body and turned me into something horrible. I know it is what is keeping the cancer under control but this feeling is awful.
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brutersmom,
Have you had your Vit B12 level tested? I developed low B12 while on Letrozol and Verzenio. Low Vit B12 can result in psychological, physical, or neurological symptoms - I had only psychological symptoms. I was crying all the time, at the drop of a hat. I didn't suspect low B12 at first because I eat meat and my level had never been low. But after learning about the range of symptoms that can occur, I asked my Primary for a test. A daily sublingual Vit B supplement corrected the deficiency. I was told not to bother with an oral supplement. There is also injectable B12 if level is really low. I've been off Letrozole and AI (Verzenio then Ibrance) since late last summer. I stopped the supplement in the Fall and had my level rechecked after that. My level is now normal again.
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wininwi no I have not had them tested. I will ask. I am also trying to get a vitamin d test added to the list. Thank you.
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I finally heard from the MO's office today. Apparently the message was delivered to the nurse minus the fact that I had only 8 hours of sleep, total, in 4 days so she didn't think it was urgent. This is combined with the fact my MO left the practice March 31 so the nurse it was forwarded it to had no idea who I was. Took a bit of doing but I finally got a call back from the MO I saw in the hospital. She has me stopping letrozole for a week to allow me to get some sleep and also to be sure that it is the letrozole and not something else going on. She wants to be sure before adding another drug to the list. The other good news is the MO I was seeing, is coming back in May and I have been moved back to him so my calls will go to my previous nurses that know me, not someone new.
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Good grier, brutersmom! What a rollercoaster! I'm glad you are going to get to go back to the other MO. I hope you can get some sleep.
Carol
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I still haven't slept much but i expect i need about 48 hours for the letrozole to get out of my system but my brain has slowed down a bit. A memory of my cousin popped up on FB today that triggered some thoughts. My grandmother on my mother's side had depressive disorder. My uncle (her son) was manic depressive. My cousins on that side were fine but one of my cousins had a daughter who has manic depressive disorder and another cousin has a grandson with manic depressive disorder and a grand daughter that was manic depressive that committed suicide 2 years ago because she could live with her "demons." My mother and my sibling and our kids have not had issues. I struggled with mood swing and night sweats through menopause and finaly took an anti-depressant which really helped. Fast forward to cancer. Both arimedex and letrozole have triggered very manic and at the same time depressive thoughts. Now from my rambling to my question. Have there ever been studies done on aromatase inhibitors and manic depressive behavior? I keep wondering and I have thought this before that letrozole triggers something in my brain that is not normal.
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I need some help from you ladies. I became stage 4 mets to lung. I had my pet scan today, so we will wait for that report. Originally the MO said I would be taking Keytruda, pill form. Well it doesn't come in pill, so then it went to Kasqali. Just got a call about Humana rejecting that and I must start Ibrance.
I do not know efficacy versus Kasqali. I do no Keytruda is not a good fit due to immunotherapy treatment and I am a long term MS patient. Kasqali sounded exciting to me and now, poof it's a goner.
Can anyone chime in on opinions. I'm new at this and been thru the wringer all ready in just 4 weeks of being diagnosed. Hospital stay twice, pneumonia, port to drain lung every 3 days and oh that port is painful (rubbing against a rib and then settling under my diaphram).
If Humana is doing this to save money and efficacy is same and side effects similar, ok then.
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I had mets and pleural effusion to the lung. All my other tests were negative. Because I had not been on any cancer meds for 6 year, they started me on Ibrance and letrozle. I have been on that for about 3 months. My pleural effusion stopped after about 2 weeks. My tumor markers have been dropping. I am back to working out and all my other activities. I have some issues with letrozole but the doc and I are working on those. Hopefully others will chime in soon. I know that in some of my groups people have had long successful runs on Ibrance.
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Irishlove,
I absolutely love the Ibrance/Letrozole combo. I've been on it for 6 1/2 years and lead an active, "normal" life. I was very sick when I started. Like Brutersmom, I had pleural effusion and numerous bone mets. As soon as I started the drugs, I could feel them working. I have my primary tumor-it shrunk quite a bit and the pleural effusion dried up in about 6 months. I had to have a drain in for those 6 months and it was somewhat uncomfortable and I couldn't immerse my body in water. My first year under treatment was somewhat difficult because I was so sick and had been weakened by cancer. I gradually rebuilt my strength with a consistent program of exercise. I had some side effects my first year-some minor hair loss, occasional mouth sores and fatigue. Now I have none-my hair thickened again. My stamina is great-I was able to stand for over 12 hours straight in election work and just took a part-time job that requires me to stand the whole shift. I play pickleball several times a week and just have a great quality of life for the moment.
My advice is drink lots of water-I was told to drink 3 liters/day and I do. Exercise to your capacity-at first I could barely walk but I kept at it and got stronger. Greek yogurt works for me to prevent mouth sores. I try to eat foods that are high in nutrients but also eat things that I just like.
Hang in there-the first few months of treatment are the hardest and I imagine with your MS, it is even more difficult for you. Try the medicine and just give it a chance to work it's miracles on you. If Ibrance isn't the one, there are many other effective treatments out there too. Best wishes!
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chicagoan, that's really good feedback on your experience.
Irishlove, I've had my MO call the insurance a few times when they were calling something unnecessary. They changed their minds. The gatekeepers at the insurance are paid to keep costs down, and sometimes we or our medical team have to fight for what we need.
Carol
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Irishlove, I started Ibrance and faslodex once dx as stage IV, in November of 2019. At that time I don't believe Kisquali was approved yet but Ibrance and Verzenio were both approved. Ibrance was the first of it's med. classification to be approved for MBC so many of us start on Ibrance.
I am still on these meds, now 3.5 years. Like Chicagoan's experience, I could tell it was working in the first month as some of my symptoms starting to go away. I have had good results since (no evidence of active disease shows on my pet/CT scans for the past 2.5 years). As Chicagoan also mentioned, in the beginning I did have a fair amount of fatigue but some of that was from my body fighting cancer (In my opinion). I had 2 dose reductions in the first year on Ibrance due to a common side effect which is low white blood cells at at the end of a cycle. I have had better white blood cell counts on 75 mg of Ibrance.
Both Ibrance and Kisquali are $$$ so I am surprised your insurance is pushing for one drug over the other but it's possible they have a better wholesale price for Ibrance for their insurance members? I don't know.... I do find it annoying as your Oncologist should be the one to choose.
I am here to join the others to tell you that Ibrance has worked well for me so far, for 3.5 years and I find it easy to tolerate. I hope I can stay on it like Chicagoan and keep thriving!
Keep us posted and let us know if you have more questions, we are a friendly group:)
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You ladies really rock! Thank you for your time to respond and words of encouragement. I'm struggling with MS, too, so forgive me if I am slightly confused at times.
Here's the latest, that I understand. The MO wants Kisqali, the pulmonoligist wants Ibrance. I just assumed it was an insurance issues as they are so slow to approve everything, or so it seems. I called the RX pharmacy to go that's in-house for the Cancer Specialists that serve Florida. I just spoke to pharmacist to hold off till I see the pulmonologist. I see Kisqali does carry side effect of increased heart rate. I already deal with that probably due to prior chemo usage for MS or just plain ole MS.
What wonderful news on each of your positive results from Ibrance. It's only been a month since I was diagnosed, so I'm still dealing with that plus a pleural effusion that required a drain. We tap that drain every 3 days. Wishing it would slow down soon.
Thanks again, Irishlove
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I had Dr Patel with Fl Cancer Specialists at Morton Plant in Clearwater, until Humana kicked them out of network. I also had good vibes with the pharmacy.
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My DH and I had dinner with some dear friends last night. They used to live here but moved up to Northern California a while back. Anyway, they're both MDs and he's an MO. He was asking how I'm doing and telling me about how there were so many recent advances in the treatment of MBC. One question he asked was about my HER-2 status. He said that even if it's HER-2 negative, sometimes it will be "low", but they still call it negative. There are some newer treatments, apparently, that can be used if Ibrance stops working if one is HER-2 low. I looked at my recent progress notes from the MO and it refers to the HER-2 status of the axilla biopsy as HER-2 negative (2+ by IHC, FISH negative). Then when I had the biopsy of L5, it said it was HER-2 negative (0 by IHC).
I'm going to email him my report (with my identifying info blacked out) and see what he thinks. His wife had cancer a couple of years ago and I think it really shook her up when my cancer came back as Stage IV. They have three kids from the ages of about 7 to 17. I see the fear in her when she looks at me, wondering if my fate will be hers.
Anyway, it was good to see them both. They sent the kids back to hotel and we brought them back to our house for desert. Fun times and had a good discussion about intermittent fasting.
Off to PT this morning. Had my MRI yesterday morning. I'm hurting more today. I don't mind the actual MRI, but that table is REALLY uncomfortable! Oh well. Tylenol is my friend today.
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Sunshine 99
Glad you had such a wonderful time with old friends. Thanks for the positive news about advances in drug treatment. I am on Kisqali, not Ibrance, but hopefully one of those drugs will fit my profile when this fails.
Hope your back feels better soon. In addition to bone mets I have arthritis and the beginning of degenerative disc problems. I am scheduled for a spine MRI next week, with and without contrast, which takes 2.25 hours on that hard table. I refused, and it is now scheduled in 3 sessions over 5 days. I also requested something for pain. I have always thought of myself as a "tough cookie", and would usually grit my teeth and bear things, but I've realized that I need to demand that treatments and tests be done in the best possible way for me and not for the medical establishment.
Hope you get to see those friends more often. Events like that really lift your spirit, don't they?
Take care
Eleanora
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Eleanora, I had no idea I could ask for separate sessions for a longer MRI. When I had my hip and femur it was over an hour and I was in tears. 2.5 hours is unimaginable! I’m glad you told me that.
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Glad I could help ☺️.
I will warn that they tried to talk me out of it. Offered iv pain meds and sedation, but I was determined to get my way. My MO prescribed Tramadol at my request to help with pain during and immediately after each session. I don't need sedation. I've had several MRI tests. I'm not anxious about the test, I don't want unnecessary pain.
Eleanora
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Spookiesmom I go to Florida Cancer Specialists in Davenport, FL in the winter. Their facility is small, but they are building a new one to be ready by fall. The staff there is wonderful.
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The last week has been a roller coaster ride with meds and side effects. I am currently on a 7 day break from Letrozole due to be coming manic, not sleeping and feeling like I might hurt myself or someone else. I felt better within 24 hours of stopping it. In the process of this, I learn the Dr. I was assigned to, when mine left the cancer center, does not treat breast or gynecological cancer patients because she has no experience. I am now assigned to a gynecological oncologist whom I have met and like, until my previous oncologist. I am not sure where I am am heading with meds. So much confusion. Ibrance this month had fewer side effects after my dosage was lowered but letrozole has kicked my butt.
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brutersmom, gosh, that really does sound like a roller coaster ride. I’m so sorry to hear all you are going through with such intense reaction to the letrozole. I hope the break from it and your new oncologist can help get you on to more effective treatment that does not have such harsh side effects. Thinking of you!
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brutersmom. I just wanted to add that I am thinking of you and hoping you get the quality of care and results you desperately need. Lack of sleep really does magnify everything. Mental health wellness is so critical in the whole treatment plan.
Thank you everyone for your input for this newbie. I am lifted to see some of you have 3 years under your belt with Ibrance. Hope comes to my mind and it has been in short supply this last month.
Irishlove
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Thanks all for the kind remarks. Finally slept last night. Ten hours and it felt good. I adjusted the blankets on the bed for spring and I hope that helps. With everything that has happened I am thinking of asking for a referral to the palitive care team. I feel like I need something that is more stable then my medical team which seems to be in constant change to get through everything.
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brutersmom - Phew - I’m so glad to hear you’ve slept! What a relief it must be.
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Sleep is wonderful. It can be elusive for me so anytime I can fall asleep and STAY asleep is a good night for me. brutersmom, I'm so happy for you. Funny how those "little things" can be so good.
Carol
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Tomorrow I talk to my substitute oncologist to see how I will get through the next couple of weeks until my oncologist returns. I am on my off week from Ibrance and on a break from letrozole and am more tired today then I was last week. Pushed myself to work out today. My hobby is sewing. I love making clothes. Going to go see if being creative helps this slump.
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I haven't log on for ages, just wanted to say hi & give updates. I got scanned yesterday & still stable after almost 4.5 years on anastrozole, ibrance & xgeva. It's so sad to see some wonderful ladies had left us. They had made so much contributions to this site & were the first ones to encourage me when I came on board. By the way, just wanted to encourage the newbies that ibrance combo can work for years. Please keep your hope alive!!
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