Ibrance (Palbociclib)
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nkb - nope, not HER2 low. But I've still got lots of other options. Thanks for the suggestion.
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RK2020 - you will always belong here! The comparison of MBC and people that were severely impacted by Hurricane Ian is a good one. I am almost at 3 years on Ibrance/fulvestrant (next month) and I still feel like I can't believe it some days. Please let us know what your MO says about your scans. You definitely have a lot of options. You did not ruin your husband's retirement but I also understand that sentiment as you worked HARD for years so you could enjoy this time together...and here we are. Enjoy Key West! That is a place I would love to visit - pretty much the farthest place in the country from where I live:) I am hoping there are parts of Key West that were minimally impacted from Ian so you can relax and enjoy.
SF-Cakes - I love your shirt! I feel like I didn't see as much Pink STUFF either but I may have been able to tune it out? Since you are in SF I know you heard a lot about the 1989 earthquake anniversary. I was at the World Series game for that event, at Candlestick Park. Something I will never forget! Congratulations on 21 Ibrance cycles! 26 more months of work sound like a good plan.
KatyBlu - so relieved your bosses are supportive and get it. Hang in there!
New Ibrancers Believe60 and anyone else I might miss - welcome! The TV commercials for Ibrance, Verzenio and Kisquali are overwhelming! I can't believe how often they run them on certain channels. Hope the beginning of Ibrance goes well and reach out with any questions.
Spookiesmom - sorry to hear that you had so much nausea. Hope you are feeling better with a treatment break. Let us know how you are doing and when you see your MO next.
Greetings to all who visit this thread and I hope you are enjoying fall and all it's glory!
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I wish they would stop letting drug companies advertise on TV and in print and insist they spend that money on research.
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stable 😁.
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Great news, Dancemom!
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Dancemom, hurrah! Great news!
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Dancemom , fantastic ! This is what we want to hear:)
wren44- I completely agree, the advertising $$ spent on these drugs should be spent on research !
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Dancemom - Great news!
Wrenn44 - Prescription drug advertising dollars wasted is a pet peeve of mine. I’ve done three surveys for cdk4/6 inhibitor commercials and they always ask if their commercial would prompt me to bring up their drug at my next visit. NO. I’ve always had an isssue with advertising prescription drugs but CDK inhibitor commercials are particularly irksome. I started Ibrance just a couple of weeks after a shocking ER visit and a flurry of tests. These drugs are very often part of the first line of MBC treatment. As focused as I always am about researching MBC, my mind at that time certainly wasn’t at the point where I could get into the nitty gritty of the differences between the 3 inhibitors. At that point I just wanted to start a treatment plan ASAP. I had so many lesions that starting something was foremost in my mind. I knew there were 3 options but I trusted my doctor’s choice - although at my NEXT appointment I did ask her the reasoning behind choosing Ibrance. I guess my long winded point is that the drug companies don’t have a clue what it’s like to be gobsmacked with this diagnosis. Those initial days are…I don’t even know how to describe them but they suck.
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Dancemom, that is just the best news!! It’s what we all are hopeful for. Hope certainly helps me keep moving forward. Funny but not funny story: I went to pickup my first cycle of ibrance at the cancer center pharmacy. Told me my co-pay was $4,000.00. I think I just stared blankly at them. Turns out I have to go through my insurance specialty pharmacy. But I was in shock for a couple hours till I found that out. Starting it next Tuesday, along with my faslodex injection. (Apparently the full price is like $14,000. Yes they should stop putting so much $ into those tv ads
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believe60, I go through a specialty pharmacy, too. I started with one and then was switched to another. I didn't choose either of them, but my co-pay of $75.00 has been covered by Pfizer (I'm guessing.) When I look at my insurance report the cost of the Ibrance is all over the place from 14K to over 20K. Makes no sense, but I'm thankful for insurance that covers it.
I can have it delivered to either my local CVS or to my home. Home delivery is usually the easiest.
Carol
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My copay would be 2800. I applied to Pfizer and am on their free program for 3 months. In Jan I'll have to pay for 3 months and then will be on the other side of the donut hole and it will be free again. I won't qualify for their program because selling the house will count as income.
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wren44, I’m so sorry you have to pay that much at first. It doesn’t seem right that a home sale counts as income. I am realizing we will probably meet our catastrophic limit for the years to come, with all these meds, tests, and scans. Sunshine99, I have the same options and picked home delivery. It came the next day.
I have a question about ibrance dosage. I start my first cycle in 2 days, Tuesday. What are the sort of things that can happen that lead to so many people needing a dose reduction? I will start at 125. Thanks for any info.
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Wrenn-I will be on Medicare as of January 1 and am worried about my Ibrance costs. Did you apply directly to Pfizer? Up to now, I paid $150/mo for my first 3 months, then I got the co-pay card and have paid -0- ever since under private drug insurance. I am worried about next year. Appreciate any help you can give about getting help from Pfizer post private insurance. Thanks.
Believe60-Your oncologist will be monitoring your blood results closely for the first few months. Many people have a drop in dosage if their ANC (white blood cells) falls below 1.0 after their off week. I am still on 125 after 6 years. Often my ANC is below 1.0 but neither my doctor or I are concerned since I seem to have pretty good health. Fatigue is quite common initially. If you have shortness of breath, you should immediately report it to your doctor.
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Hi sunshine99, I’ve done nine five-day rounds of ProLon over the years, and it isn’t IF. It is a five day, full on fast that gives enough calories to get you through, but not enough to put you out of fasting mode. It’s a terrific way to face and get through the challenges of fasting, and at this point I am much more confident about adapting it (it is expensive, but all the proceeds go to a non-profit research institute that helps people with debilitating diseases. It’s called the Create Cures Foundation). For example, as I go through my six rounds of chemotherapy, I am fasting for two whole days before and another 24 hours after each treatment. That means noon to noon Wednesday to Saturday, every three weeks (with treatment noon Friday). I had my second treatment yesterday, and this morning I’m feeling better than the day after my first treatment. Putting my body into fasting mode every three weeks, it will become more efficient and effective. The main point of it is because there is good evidence to show it increases the effectiveness of the chemo, while reducing side effects. And there is also very good evidence of fasting helping slow cancer and as a prevention. I hope that’s helpful, all the best!
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I have a general question about ibrance: I am just 5 pills into my first cycle, so 23 more days till a blood draw. I haven’t noticed any SE, but again it’s only been 5 days. I know everyone is different, but in general how many cycles of ibrance do people go through before low counts, fatigue or whatever show up? I should be more patient and wait and see, but I am anxious wondering about it. Thanks.
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believe60 - I didn't feel any side effects but my blood work showed low white blood count/low neutrophils after I completed my second pack of Ibrance. My onc. had me take an additional week off of Ibrance, retested and then I started the third cycle. Eventually, this happened too often and I had a dose reduction. I also found that I had fatigue in the beginning. I felt less fatigue as I continued on Ibrance, if that makes sense? In my experience, I don't "feel" it when my white count dipped because it never went so low to cause a fever or something serious. That has happened to some on this thread. Just keep in tune with your body. I took notes the first 6 months (day 5 cycle 3 insomnia) for example. If you ever get a fever or have shortness of breath, call your oncologist/nurse asap (like Chicagoan said, too).
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Chicagoan, I am not on medicare yet but my parents are and my father has some kind of supplemental drug coverage for prescriptions on medicare. He is 87 so it's possible the supplemental plans available now aren't that comprehensive but I wonder if your cancer center has a social worker or someone that can help you navigate this before January 1?
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believe, when I started Ibrance, my MO ordered more frequent blood work (I'm sorry I don't remember the schedule) to check my ANC and white cell count. After a few cycles of really low ANC, she had me take an extra week break, and then reduced my dose from 125 to 100. I've stayed on the 100 dose with no significant problem. My ANC is low, but not super low.
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Believe, I just finished my first cycle of Ibrance. My MO is testing blood every 2 weeks for the first 2 months. So far I haven't had any side effects. My last chemo made me miserable so this is lovely in comparison.
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believe60 - I did not tolerate 125 mg well. I checked my journal and in the first couple of weeks I experienced weakness, dizziness, fatigue, lack of appetite, mouth sore, hair thinning and I lost two toenails. My doctor followed the standard Ibrance directions for blood work - “Monitor complete blood counts prior to the start of IBRANCE therapy and at the beginning of each cycle, as well as on Day 15 of the first 2 cycles, and as clinically indicated.“ I was tested on day 15 and my ANC had dipped to 828. I was informed to take a 7 day break and take another blood test. After 7 days, my ANC dipped even lower to 777. So I took a second 7 day break.I reduced dose to 100 and tried again. Again, after 14 pills I had to take a 14 day break. I was finally able to complete a cycle on 75 mg. We all react differently to these drugs. Hopefully, you will continue to tolerate 125 well. Like aprilgirl said, I didn't feel my low ANC. All my symptoms lessened with each dose reduction. Even with the challenge in the beginning, I remained on Ibrance/Fulvestrant for 19 cycles. Good luck
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Hello to all - It appears that Ibrance and/or Faslodex (after being on them since January 2020) are not working for me anymore. My tumor markers have been steadily climbing for the past 6 months and I’m not sure what is next or what my options are. Do any of you have experience as to what I can expect or what questions I should ask at my next appointment? Maybe Verzenio or Kisqali? I’ll probably stay on Xgeva since I have bone mets only. Any advice or personal experience would be appreciated. I’ll take my MO’s advice but hope to be prepared before I see him.
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sharware - Have you had any imaging recently? I'm having a similar experience. I started Ibrance in Dec 2019. My TMs have been rising again this year. A recent CT scan showed a lesion in my liver that wasn't there earlier this year. I'm waiting to be scheduled for SBRT soon. In the meantime I went back up to 125 mg dosage from 100 mg. I see my MO tomorrow. He may wait until after SBRT before making changes. Guess I’ll know more tomorrow.
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Shareware- sorry to hear this! Are you Her 2 low by any chance? ask your MO- should be on the first biopsy you had done. If you are you can consider Enhertu. otherwise, if you have no other mutations there is Xeloda and Afinitor. If you have other mutations you may get a more targeted treatment like Piqray or PARPi.
My MO would not put me on a different CDK4/6i after the first one failed- some doctors do try that.
If you only have one spot- you may be able to get radiation and stay on your Ibrance. You need a scan to confirm progression.
Good luck!
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Serenitystat - I’m due scans in December, so should know more what’s going on - I have multiple bone mets (skull, sacrum, several ribs). I do have words of encouragement for you because the SBRT is a fantastic way to zap individual areas and hopefully will get rid of your liver met. I had SBRT to my public symphasis in March 2019 when I only had that one bone met. By end of 2019, I had multiple bone mets and went on Ibrance/Fosladex/Xgeva in January 2020. Good luck to you tomorrow and thanks for your response. Let’s keep each other updated!
nkb - I’ll have to ask about the Her2 Low - I’m not sure if my bone biopsy from 2019 is still accessible. Thanks for all the treatment choices you mentioned as I didn’t know all of them. It makes me feel better knowing there are options out there. First step is scans and then maybe SBRT, if a spot is really active. As I just told serenitystat,the SBRT really helped me and got rid of the cancer in my pubic symphasis. Maybe they can zap one of my spots if overly active and I can stay on Ibrance like you mentioned. Thanks for your reply. Hugs to everyone on this thread as we fight together in spirit.
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sharware- After 11 months on Ibrance/Fulvestrant I had a spot on my spine zapped with radiation and I continued on Ibrance for a total of 19 cycles. When my progression became multi-focal, I tried Verzenio/anastrozole. I decided to switch both meds because there was no way to tell which drug was failing. I had an MO tell me that the endocrine therapy does the heavy lifting and I wasn’t sure anastrozole would work for me but I figured it was worth a try. Three months later I had more progression and went on Xeloda. Because I don’t have any actionable mutations and I’ve already taken AC+T, other options were Aromasin/Afinitor and Halavan. Xeloda did wonders to begin with but 9 months later I’ve got more progression. I go soon to meet with a clinical trial doctor. Hugs.
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rk2020 - thanks for your reply. It sounds like I need to scan again to find out what’s really going on. You don’t mention CA 27.29 tumor markers and if those were rising like mine are. Some don’t have them tested but mine have always been a reliable indicator of my tumor load. My next MO appointment is end of this month and I’ll know more what he is thinking about treatment although that decision probably won’t be determined until my scans in December. Good luck to you with the clinical trial doctor. - I would be very interested how that goes for you as I’m thinking about looking into a trial (if I’m eligible)....Hugs to you
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sharware - My TMs rose again, and my MO expects them to rise even more with SBRT. I’m scheduled for 5 treatments beginning this Friday. Hope it works without too many side effects. I’m in my off week of Ibrance and will not restart until 2 days after SBRT is completed in mid November. 🤞
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To sharware and serenitystat
Has your MO talked about (or ordered) a liquid biopsy to test for mutations?
https://www.healio.com/news/hematology-oncology/20...
Wendy
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sharware- I get ca27.29 tested every 3 weeks when I get my other labs. My numbers never get very high (69 is my highest number and both times I was in the 60s I had A LOT of cancer).
Up until last month, a rise or fall >6 or 7 points would correlate with my scan findings. But my last scan showed several bone mets and a 2 cm liver lesion and my ca27.29 only went up 2 points on each of my last two labs. This increase is so small that it could be just lab error of margin and yet several new lesions showed up. Hmmm. Not sure what to make of that. Has my cancer mutated making my ca27.29 no longer accurate? I haven’t seen my MO since I got my last lab results but I’m seeing a trial doctor on Monday.
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weninwi - Thanks for the article. A liquid biopsy hasn’t been brought up before. From the article it doesn’t seem to be SOC for me (yet). I’ll ask my MO though if it would be considered in the future.
My first SBRT is tomorrow. 🤞
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