Ibrance (Palbociclib)
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If we're on the subject of TM's, here are my most recent graphs. If you believe CA 27.29, I'm fine. If you believe CEA, I am dead by December. Scans next week.
I always say TM's are not very accurate. Hope I am right.
Does anyone monitor their CEA? It's outdated as a biomarker, replaced by CA 27.29 and CA 15-3. I had to fight to have it included in the panel and yet it is the signal with the clearest "message". Wonder what it means.
>Z<
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Z, my MO checks all 3 tumor markers and my CEA has never been out of normal range. The 15-3 bounces around a bit but the 27.29 had been rising but last month dropped to normal. I just had blood tests today and will let you know the results later in the week. All that being said, my tumor markers have never been very elevated even when I was first diagnosed and my MO said at that time that the markers weren't going to tell us much.
Your CEA marker is kinda scary but maybe it means nothing. I'd believe the 27.29, which seems to be the one my MO looks at most. If I remember right, you have scans coming up soon. That will tell the real story but I'm sure you're nervous about the whole thing. I'm sorry you have to go through this anxiety. I sure do hate this #% ¥€ cancer. Praying for you and a cure for this beast.
Hang in there!
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Cure-ious, Yes I'm 8 years out with mets, with extensive bone mets and a few soft tissue mets as well. I've had slow progression for many many years but since April it is on the fast track now and has spread to more spots. My MO is gone for the next 2 weeks, but when I see him I'll ask about Pl3KCA and other options. I have not had affinitor, but have had aromasin and had a reaction to that. I'm anxious to hear what the researcher has in mind as far as genetic testing. I will come back to this thread if I hear anything new. Thanks for asking.
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Good morning...
For what it's worth, I asked my oncologist about tumor markers...his opinion is that they are not reliable.
LindaLou....Hang in there. And, please stay with us and let us know about your new treatment.
Hope
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Z, could your CEA level be measuring inflammation in your colon? Cannot remember when you had that tapeworm.
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My CEA is 111 that really scares me too . I wish they hurry up with these new treatments
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My CEA is 111 that really scares me too . I wish they hurry up with these new treatments
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Kimchee hang in there....I feel your concern. Take it one day at a time. Just did my labs today and have to be off Ibrance another week. I would have never guessed that I would have to wait another week. This is only the 2nd time to do this. Have been on these Meds since May 2016.0
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I have been on them for a year now . I'm going insane waiting to hear what is going on app. is at 3:00
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CEA can rise due to gut inflammation. I've gotten rid of all parasites, according to a whole slew of tests. Still there can be gut inflammation. I see why many doctors do not do these tests. My CEA is high, but it is not actionable information.
Will report on how this plays out, of course.
>Z<
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Thanks to patient portal I looked up something and found
these words { Peritoneal Carcinomatosis] which there is something going on .
Now I'm freaking out even more . I don't understand why they wont let me have a total hysterectomy! They keep say this is part of my mets
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Kimchee....Like everyone else advises...hang in there! I used to read all those reports, but I haven't done so since my diagnosis of MBC. It makes me a nervous wreck, so I avoid looking at anything until "after" I hear from the doctor. Hug to you!
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hi everyone,
My mother is on ibrance 125 the last 3 months but her RBC had been quite a lot bellow normal.
Her Oncologist said to decrease the number of days taking the pill to 3 days on 4 days off for 3 weeks and then 1 week break.
Is that the same as taking the 100mg or the 75mg?
If yes, what's the point of having different versions
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So to let everybody know my doctor said the Ibrance stopped working . Still stable but its time to change meds ,which I will find out about I two weeks . I was taking 100ml. he up to 125ml just to see how that will work before change . Thank you everybody and Godbless
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cooperak, the idea behind having lower dosages is to permit continuous use for the 3 weeks on, without suffering from excessive side effects. Your mother's oncologist is not following the established treatment protocol, if they are instead of lowering the dosage, simply increasing the time off. My wife's oncologist believes sustained treatment is more important than dosage. That is certainly the way the drug was tested during the clinical trials. Is your oncologist on to something new and better? That we have no evidence of, only the evidence that it works the way it was tested during the clinical trial.
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Saw my MO today and things are okay. One marker was flat, one was down and one was up just a hair over normal which upset me. Everything was good last month. I just want it all to be good all the time. I asked and he said he doesn't give one marker more weigh than the others. It was the Ca27-29 that was up and I wonder if he was just putting my mind at ease. However, I have been off Ibrance since July 31st (because I passed out). and he's ok with me not going back on it until we return the middle of October. Then a PET scan and blood tests and we'll decide if I should just use the letrozole longer until we see progression or start Ibrance at 100mg which should help the fatigue. He feels that since my cancer took 25 years to return, it's very slow growing. This break from Ibrance has been great. I feel so much better. Just praying the cancer stays stable.
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Faith - interested in how your do. i am thinking of dropping ibrance at some point in the next few months. we'll see.
>Z<
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Faith 840- Why did you pass out?
Z- Why are you thinking of getting off Ibrance?
I read somewhere when the palbociclib stops working It is often a PI3K mutation-anyone know about that?
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The same reason Faith is off it. It suppresses blood cell production which, long term, has got to be a problem. I always feel a bit off even on a good day. The standard practice right now is to stay on it until it fails, but there is actually no evidence for or against that strategy.
Starting cycle 22 this week but consider if I make it to cycle 30. For various reasons, I don't think anyone can tell me why I made it to cycle 30 ... whether it was the ibrance, the letrozol, both or neither. But I can tell you that I feel like crap a lot of the time which interferes with my self care and overall well being. And that is going to effect outcomes for sure.
>Z<
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Interesting discussion Z. While I certainly can't claim to have researched this, I personally have some reservations about the quick jump to Ibrance in the early days of treatment. I was actually surprised when my MO suggested it as I expected he would favour Ibrance and Fulvestrant as a second line treatment if the AI failed. I don't think it is clear if it is any less effective as a second line. There are certainly many women who have done well on Femara or Arimidex alonefor quite some time.
I can certainly attest to the impact on my blood. As I've mentioned, my RBC was in a state of steady decline, never returning to a normal level after each cycle. Even after more than 5 weeks off Ibrance my RBC and hemoglobin are well below normal. I agree, that can't be good.
Ultimately, while I would love to be a super responder, I am not terribly upset that Ibrance is off the table for now. It's early days for me and like Faith, my cancer should be slow growing (16 years out from original diagnosis). I'm hoping to have a reasonable run on Anastrozole and by then we might have more answers and less toxic (to me) options.
Pat2
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I'm thankful that we've reached a time when people have choices for MBC treatment. I can remember when a Stem Cell Transplant following High Dose Chemotherapy was considered the only aggressive way to treat.
I believe this community empowers us to know we can make treatment choices based on information gathered from around the world.
Regarding tumor markers: I've chosen not to have them done as I've had friends live their lives on a roller coaster of fear over those numbers. I've decided to go with the PET results + the x-rays done by my orthopedic oncologist + symptoms. We each have to decide what we can live with, don't we?
I saw my oncologist yesterday and told him I'd like to scan again at the end of November and if things look good, take the month of December off Ibrance. He mentioned something new he's excited about for early next year. We ventured off onto another subject and I didn't get the details. He keeps making it clear to me that Ibrance is just the beginning of new drugs working in new ways for us. (He mentioned the new drug after I asked about Keytruda so I'm assuming the new drug works along those lines.) Pat2, he emphasized that the side effects should be more tolerable!
Anyway, I will finish a year on "the Big I" and XGeva next week and 13 months of Arimidex. In August of 2016, I was afraid that I would have a future of increasing pain until I eventually died from MBC. Reading about your stories quickly gave me hope that I could stay on this protocol for a long time and do well. A PT worked on me with myofascial therapy for 3 months and rid me of almost all pain. Surprisingly, the pain was not cancer-related! My only other discomfort turned out to be arthritis which hasn't even required Junior doses of Motrin!
A quick overview for you new folks.....I'm 23 and a half years since being diagnosed with Stage II BC, new primary 8 years later, metastatic node on chest wall in 2012, bone mets in 2016. Like my oncologist, I believe we are on the cutting edge of MBC treatment and that we can expect years of life with the people we love! God is so good!
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Good morning...
I love hearing these "so far" success stories with Ibrance/Letrozole combo. I remember when I was first diagnosed with BMC and was told there is "no cure", I just stared at my oncologist and the tears started flowing. He assured me I did not have "one foot in the grave"...of course, this was music to my ears. But, I admit, whenever I'm having a day of not feeling well, those dreadful thoughts come back in my mind. He said the longer it takes for the MBC to appear, the better our life expectancy. So...I'm just hanging in here with the rest of you and hoping and praying our treatments - whatever they may be - work wonders for us.
Hope
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Anybody else out there start with 125 on Ibrance then had it lower because of wbc to 100ml. then it stopped working , so they higher the dose again to 125 to see if that will work before your moved on the another option ?
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Kimchee...I'm on round 3 of Ibrance 125. I've never been given the option of a lower dose. My counts aren't great, but I guess they are good enough to tolerate the dose. I have very few side effects. Even the fatigue has subsided quite a bit. I recently started taking B-12 -- maybe, that's helped with the fatigue. I seldom need a nap anymore. I would be willing to go back to 125 mgs. if I were you to see if it works.
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Thank you nonahope you have made me feel better and I guess if this doesn't work there surely be other options
Prayers
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Kimchee- I was lowered to 100mg also after the first cycle. If it stopped working and I was able to tolerate the 125 mg again, I would consider it. There is also Ribociclib (Kisqali) which is similar to Ibrance - there is a thread about that you could read. And a third similar medication that is not approved yet, that will be out soon I think.
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I did go back to 125 just took my first pill today . Thank you for your support and prayers that they find something soon for all of us.
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New encouraging article about Abemecliclib. I'm not sure, however, whether this means it is not appropriate for those already treated with Ibrance??
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I think there are many reasons why I passed out, when the EMT's came my HR and BP were both very low. I've also been dealing with a lot of stress worried about our upcoming trip to Italy but I think my body just knew I needed a break and I'm so glad I took it. The difference in my energy levels is great. I get the impression from my MO that taking a break from Ibrance is like resenitizing your estrogen so it starts working better again. I was on the 125mg the whole 20 months before I stopped and I will probably start at 100mg when I start again. I think we are just in the beginning stages of lots of new ways to treat MBC and all.of us are pioneers.
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I just hope we can benefit from it
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