Ibrance (Palbociclib)
Comments
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Sunshine ask your pharmacy if they will take back the 125, they can give to someone who has insurance or $$ issue. Mine took back 3 bottles.
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Karen- So sorry to hear of your progression. Hopefully you will get a long time on Faslodex. You mentioned thinking you will not get as much time on this treatment. Why? I thought I had read that if you have a long run with your first line therapy, then the next therapy should last a while too. Hoping that is the case for you. Keep posting even though you will not be Dancing with us on Ibrance.
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Karen, sorry to hear about your progression. Like BevJen said, I have not had any issues with the Fulvestrant shots and follow the same protocol she wrote. I warm up the shots in my hands. I was on Femara for 7 years after treatment in 2008 and had much more joint pain compared to the minimal joint pain I have on Fulvestrant. I also received a flu shot on Monday (had my Fulvestrant injections and oncologist meeting). My arm/flu shot injection site still hurts today! Hips/ fulvestrant injections sites don't hurt.
Please keep posting on here and keep us up to date!
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Karen - really disappointed to see this, although I think you thought it was coming, so hopefully that cushioned the blow a little. That's a rapid protocol switch, though, and without Ibrance?
Do let us know how tomorrow goes and best of luck that it all goes smoothly.
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Hi, Karen. Faslodex can work when letrozole has failed. Two points: 1. Why not pair the faslodex with a targeted therapy such as abemaciclib or afinitor? 2. To help guide treatment, can you get genomic testing (Foundation One, Caris, Tempus, Guardant) to find out if the cancer has developed a particular mutation that makes it resistant to I+L? The answer can suggest what will or won’t be worth putting on your A list of meds to try.
For faslodex I am most comfortable (That’s a relative term) lying down with a pillow under the knee of my bent leg, like a relaxed sleeping position. I wrap the syringes in a warm blanket the nurse gives me. I had a nurse cringe at the thought of using underarms for a clean syringe.
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Thanks for the tips and thoughts everyone. I too wonder about Faslodex only.... will ask about that tomorrow. I was very relieved to see BevJen and Shetland on the Faslodex thread too.
Sunshine, hopefully the 100 will be fine for you but if not there's always 75!
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Karen, I'm sorry you must go through this anxiety. Remember when I had the new growth? I switched from Ibrance and Arimidex to Lynparza and still had some growth. Then the Guardiant360 test recommended Ibrance/Faslodex so I switched. I'm back to the cancer regressing again!
I'm going to expect good things for you on the Faslodex alone! I have a friend with MBC who has been on Faslodex alone for more than ten years.....maybe even twelve! (I have a crummy memory......Let's just say it's a long time!)
Who knows? You might end up adding the Ibrance back some day!
I'll be praying for you.
Love from PatGMc
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Karen, so sorry to hear. I agree that maybe they could have just added Falodex with the Ibrance or something else, but I'm not a doctor. It's worth asking about though. Keep us posted and good luck.
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Good evening ladies
Just a brief check in October has been hard. Actually end of September and this month have been hard. Having a lot of flashbacks from where I was 2 yrs ago going through early stage treatment, its like groundhogs day and I really don't like it, plus, well...I ended up Stage IV in spite of it and there is just a tad bit of bitterness about it hanging like a little storm cloud over my head...I wonder sometimes if these feelings will ever go away. Coming to the end of my first cycle on 100mg, 11th cycle overall on Ibrance, 10 of which were at the 125mg dose. I asked to drop because of fatigue. Saw MO last week, we agree much too soon to say whether its doing anything for fatigue yet. Think I'll go several cycles if I still can remain stable on it before I decide if I need to drop again. Ibrance so far has been surprisingly good to me. I know the ride isn't forever, BUT, so far so good
Need to go back and catch up on this thread. I haven't been around the forums in awhile, haven't blogged in a month, just been in a mini funk, but hoping to unfunk soon
Just wanted to say hello and I'm still around even if a little quiet these days
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Rabbit, it's good to see you here again! I just picked up my 100 mg dose today. I'm waiting to hear if my ANC was high enough to start. I "quit" the 125 mg 2 weeks ago and am hoping I can get back on this tomorrow.
I'm sorry you've been in a funk. Hugs back to you!
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For those switched to lower dose Ibrance, how long did it take to not feel so fatigued and have higher blood counts? I was on 125 mg capsule for 9 rounds, switched to 125 mg tablets rounds 10 & 11; cycle 12 dropped to 100 mg, I have just started cycle 14. Fatigue is not as bad, but it was getting better before the lower dose. Blood counts are still low, but oncologist keeps saying they are within the range expected for someone on Ibrance.
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Karen, ref faslodex I hope this article helps. the researcher/author is the MO I saw last year for second opinion, she is an experienced researcher/ Oncologist in the field:
https://www.nejm.org/doi/full/10.1056/nejmoa1201622
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BlueGirl, I can’t remember how long it took not to feel as fatigued, as I was only on 125 for one cycle, but my neutrophils are still struggling, and I still have to take a week off here and there. I also get fatigued, but not as bad as the first 125 month.
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It's horrifying to me that patients are warming up their own Faslodex shots! At my cancer center, they warm the shots on a special heating pad. It takes about 20 minutes. The shot goes in slowly at the top of my hip.
Radagast, good to see you again. Treatment PTSD is a real thing. I am forever grateful for the therapy and counseling I undertook, along with the medical care.
Asked my oncologist about requesting TM's for my next labs, as we hadn't been doing them (He is my third oncologist. I've been doing this for six years now). He agreed, after looking at my chart, and noting that my last TM's were taken in 2017, and that there had been a rise in them at that time, which coincided with a progression.
Which was a reminder for me that if I have a question or a concern, I really need to voice it. Even the best doctor won't be able to remember every detail from his patients' cases.
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Nine Twelve: I have been tracking my tumor markers since I was diagnosed in 2013. When I go in my blood draw, I ask the nurse if my oncologist has ordered the TM's. If not, (did he forget or just not want them at that time), I request they be added to my blood draw so I can follow them. I asked the nurse the last time that happened if he would get upset with her for adding that and she told me "whatever the patient wants, they will get and he will not get upset with me for adding them". They are very, very, important to me and I ask for them every time. I realize not everyone feels the same way about them but I am the patient and I get great comfort and/or distress in these numbers along with several others that I track.
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Miss Rabbit...so glad to see you here. Many of us have been wondering about you so we're grateful you checked in.
As far as being in a funk, it happens to me too and I'm sure most of us here. It's hard to stay upbeat all the time. Some days I feel really sad, others days I feel really angry, other days I wonder if it's all worth it and then some days I'm doing pretty good. But those ups and downs are sure there for me. All we can do is keep on going. But I think releasing our anxiety through tears or even screaming is good for us sometimes too.
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Did someone say "funk"?!
You know this means I have to chime in with my old standby cures for feeling that way.
First let me say that I don't mean to blow off anyone's genuine grief about what we all face each day. We'd be crazy not to feel blue and even depressed at times. As a survivor of clinical depression (40+ years!) I can say those depressed feelings are worse than anything that has happened to me in the 26 years of ups and downs with breast cancer.
I highly recommend the work of Dr. Albert Ellis whose book, Guide to Rational Living was recommended to me by my therapist (whom I'm thankful I haven't seen for 39 years). Rational Emotive Behavior Therapy has become the most effective way of learning to be happier in spite of your circumstances. Google the book and I think it's still available free on the Internet or you can buy it used on Amazon for a couple of dollars.
For many years my cure for anxiety has been doing Laughter Exercises. You can also Google Laughter Therapy and find countless YouTube videos to take you through some effective exercises. Spending lots of time with fearful thoughts running through your mind changes you chemically. Laughter.....even fake laughter.....can reverse that process.
Sending love and laughter and wishes for a great week-end!
PatGMcHaHa
https://smile.amazon.com/gp/offer-listing/0879800429/ref=sr_1_1_olp?keywords=new+guide+to+rational+living&qid=1602824730&sr=8-1&dchild=1I like this book too:
https://smile.amazon.com/Stubbornly-Yourself-Miser...=sr_1_4?crid=2KMN7F958ZU2F&dchild=1&keywords=new+guide+to+rational+living&qid=1602824575&sprefix=new+guide+to+%2Caps%2C172&sr=8-4
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I Beat It - thanks for that article. I did ask why Faslodex only and they said while they know combinations are happening and there are trials in the States, they aren’t approved here yet and there wasn’t evidence to say continuing with Ibrance or any other 4/6 inhibitors would be effective. But my nurse practitioner did say she thought it would come in the future.
Good to see you Rabbit!
By the way the Faslodex shots were absolutely fine and my nurse did all the things already mentioned here re making the shots easier. I did take paracetamol and an anti histamine before going and rubbed some arnica cream on the tiny wee bruises later on. So all good....but I was so anxious about the whole thing my BP spiked to 160/105 and they nearly never gave me it. My nurse trusted me when I told her it was normally around 125/85 as I have a home monitor I use occasionally. I have to take in some readings next time but moral of the story is Keep Calm!
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Has anyone gotten a sore throat from taking the tablets?
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Several of us have posted that we are on lower doses than 125 mg, usually because of low blood counts, other SEs, just not tolerating it. I have seen similar comments on AI and Tamoxifen. Have DRs discussed how well lower doses are tracked? If I interpret this abstract on Ibrance correctly, it sounds as if lower dose (at least during the initial cycles) is associated a shorter progression-free time. Any thoughts? I will post this link on Ibrance site, since several have commented that they are on lower doses than the standard 125 mg. Recently my DR also lowered my dose saying that studies showed there was no difference in 125 mg vs 100 mg.
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From the journal of International Journal of Clinical Oncology, potential bniomarkers to evaluate effectiveness of Ibrance / CDK4/6 inhibitor.
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Bluegirl, the first study you referenced about dose of Ibrance is just weird. I'm not trying to show off but I have a PhD in statistics. First, a sample size of 56 is NOTHING. Then 12 weeks, 36 weeks? Comparing what you took for that period predicting long term PFS values? It was really hard to follow and they used some terminology I didn't recognize. I would not put a lot of credence in that study. Use my data instead. 75 mg since April 2016.
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Jaycee49 - I'm glad someone understands numbers and can point out weaknesses in how they are presented. Took one required statistics class in school, at first, did ok to moderately good, then started failing, barely passed in the end. I think in that study they were trying to show that there is some evidence to have more studies/information on how how/if dose affects overall outcome. If DRs share information (protect PI) on cancer types, drugs etc, effectiveness, maybe something meaningful will come from it. But there are so many other differences. Not only is BC not "one disease" , but its victims are not all "one person" who repond the same.
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THe Moderators sent this to me as a PM when I sent links about 2 studies. In this study, (small sample size) the authors conclude that it might be ok to lower the Ibrance dose in " fragile" patients. https://www.targetedonc.com/view/reduced-palbocicl...
My oncologist has never described me as "fragile", and said that my low blood counts were within range of what would be expected of someone on Ibrance, but not so low that she would take me off of it. She did lower it to 100mg, maybe because fatigue was my biggest complaint. Fatigue was getting better before the lower dose, blood counts have not gone up. This is the 3rd cycle of the lower dose, on cycle 14 from the start
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You can tell from these articles that these are "light" journals. Not rigorous scholarly journals where the research is peer reviewed. The one I posted about earlier didn't even list the authors. And it was very short compared to normal journal articles describing serious research. I looked up the journal and what they do is summarize previously published studies. The publisher of that one didn't even allow them access to the abstract. They make money by selling advertising.
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Jaycee - love to hear that you have been on Ibrance since 4/2016! I hope to be a long timer on this combo, too.
Karenfizedbo15 - happy to hear that your Faslodex injection was ok!
Simone80 - I have not noticed a sore throat from the Ibrance tablets. I take mine in the evening and try to drink a fair amount of water after taking it. I still really don't like the packaging as it's so hard to open!
RRabbit - always good to see you pop in and post!
PatgMc - love your post and will try to find that book! I do like the change in seasons but we are having some gloomy days in Seattle and add in the election/news/covid and ..... I could use some Laughter Therapy:)
BlueGirlRedState - I took 125 for 6 months and was lowered to 100 the past 4-5 and it seems to be going well, scan in June and scan last week show NED - makes me nervous to even type that for fear of jinxing myself but so far, so good! Next scan in January. WBC is better on 100mg.
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Simone80...it wasn't really a sore throat in the normal sense that I got, it was more like a pain that went down into my esophagus as well. It happened for a few days out of the month. But it seems better now (knock on wood).
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I started on 125 mg and was immediately dropped to 75 the next cycle. I’ve been on 75 mg since July of 2019, and I don’t know if I’ve had progression because scans are awful for me.
Candy, I wanted to let you know I went to my appointment a week early because I will be out of town next week. I just finished my last pill of the 21-day cycle yesterday. My neutrophils were .53 and my WBC 2.0. I totally get where you’re coming from. Can you update on your latest bloodwork with the 5/2 protocol? I talked to my doc today about it, but she said she hasn’t seen anything yet about that trial. I told her it’s not actually published yet.
I’m seriously thinking of switching to Verzenio, but I’m not sure if I should. She still told me to go ahead and start the Ibrance next week. I’m having a huge communication issue between the insurance and the specialty pharmacy and haven’t received my tablets yet for the next round. I have to have them by Thursday. It’s been a tough week from last Monday.
I have to say I totally lost my shit with a supervisor today from the specialty pharmacy. She said she understood, and I yelled back, Do you have cancer? She didn’t answer. I said, You don’t understand. I have been trying to get my prescription filled since last Monday. Too many cooks in the kitchen, and the left hand doesn’t know what the right hand is doing. I’m beyond frustrated. It all has to do with the prior authorization, which was done in August, but the pharmacy hasn’t received it yet.
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KBL - So sorry your pharmacy is stressing you out. 😢
The 5/2 study has an estimated completion date of February 2022. Unfortunately, it has only 55 participants.
I’m also contemplating going to Verzenio as it may be my best choice but I’m not looking forward to it. I do not want to start at the highest dose due to the high rate of diarrhea.
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The nausea on 125 was so bad, I stopped 3 days early. Gave myself a 2 week vacation, started the 100. In 3 hours the nausea was back. I finally got a script for zofran. Good stuff!! First se listed, may cause constipation. Boy did it ever. So I stopped the 100. MO said I could stop ibrance continue with letrozole. I’ve been bummed all week. Won’t see MO for 2 more weeks.
Any ideas?
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