Ibrance (Palbociclib)
Comments
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Hey, candy. RK’s idea of switching from Ibrance to Kisqali is an interesting one. I read somewhere that it has less impact on blood counts, but may cause more GI upset. It might be a trade-off you want to make. Regarding your rural onc, here is what I would do (I’m so opinionated!). Get signed up now with a good second opinion onc at an NCCN or university-based cancer center. Don’t wait until something is happening and there is no time, but get established now by sending your records and having a telehealth appointment. That way, when there is a decision to be made or an issue you are having trouble with, you have help at the ready. Regarding the NCCN guidelines — They are not exactly a cookbook. There is plenty of “consider X” and “plus or minus Y” Language in there. There are long discussion sections about the research. The oncologist is expected to exercise knowledge, judgement and experience. Especially, as someone above pointed out, when you are beyond the first few standard treatments. And there may be things to try that are not on the list yet but are reasonable. Medical Oncology is not only a science but an art. Keep advocating for yourself, sweet candy!
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thanks RK2020...
It’s good to know the reasoning for the delay
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Cannot use BOLD key anymore. Why, I don't know. So I am trying asterisks to highlight names.
**Husband**---- I too have heard of the on 5/ off 2 scheduling. I believe with that schedule you go all month long-- no 7 day break. The breaks are the 2 off each week. A possibility.
**Shetland**--- I have thought of the possibility of switching to another CDK 4/6 inhibitor if my MO is concerned about the counts with Ibrance. Would have to check into it. My MO has not said she wants to stop Ibrance. But she mentions my counts each month and frets when they are not over 1000 (1.0). With all the hoopla this month with the Zarxio shots, I worry she will want to stop Ibrance due to the neutropenia. She has not said it yet thought. So I am thinking of responses--change in Ibrance schedule or change in CDK.
Concerning the second opinion with a larger center----- I went to a university based, NCI accredited, center when first diagnosed for a second opinion. They agreed with the plan-- AI and CDK 4/6 inhibitor-- so I stayed local for my care. I called that center earlier in this year and asked about maintaining my relationship with them. They said I am an "established patient" for 4 years, so I can just call and have latest records sent to them and they would see me. But after 4 years I would be a "new patient" again. So my time is up Fall of 2021 then. I asked if I should pop in now. They said not unless a change in treatment is needed--progression. Not to come in just to say HI. I guess if the Ibrance/neutropenia thing is an issue with my MO, I could then call the other center for an appointment to discuss that.
To me the NCCN Guidelines are hard to follow. Online you click on links to take you to other options. So in my opinion, way above my brain. Need to reread them again.
**Shetland**--- I am glad you are opinionated. Keep it up. Hugs.
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Hello, Ibrance Dancers!
Well, a couple of weeks after scans and today I just had my video consult with my oncologist (last one was four weeks ago).
Four weeks ago, I would have bet the farm that she was going to push for me to go off of Ibrance. The worst language in my scans, though, was that there was minimal interval change in my bones and that my liver is stable. The MRI for my liver actually said my bone stuff was unchanged and that captured mostly where I have sclerotic mets. So -- yay -- I am staying on Ibrance and faslodex for at least another month. I am happy about that because it's a devil you know versus the devil you don't type of a thing.
We are now adding Zometa to my routine, every three months. Up until now, I had not been on one of those other drugs, mostly, I think, because when I began my treatment with this MO in May of 2019, we didn't think I had any bone disease. In Oct 2019, it started showing up as sclerotic mets, and threw all of us for a loop. But after listening to Dr. Brufsky on the LBBC program last Saturday, I specifically asked for Zometa, and she agreed that it's a good time to add it.
CA27-29 is still going up, but much less quickly now, so that's weird. CEA jumped up last month but was stable this month. So we don't know if those tumor markers are telling us there's more coming, or if something else is going on. So we'll keep looking at everything and figure out when it's appropriate to maybe switch treatments -- but not yet!
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BevJen----- Woohoo !!!!!!!!! Glad you can stay on Ibrance/ Faslodex. And add Zometa.
How did you word that you wanted to start Zometa? Did you say you watched a seminar from Dr. Brufsky, or did you just say Hey how about adding Zometa? Wondering how to approach MO with ideas for using or changing treatments. Maybe I go about it wrong.
So happy for ya.
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Husband11- I happened to find a study on 5 day on/2 off this morning and I found the logic behind this alternative scheduling interesting. No study results yet so I really appreciated you sharing your friend’s results.
https://clinicaltrials.gov/ct2/show/study/NCT030079790 -
BevJen...that's great news!
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Hi Candy,
I was pretty careful how I worded the addition of zometa to her -- largely because I don't think she was that happy that I consulted with Dr. Cristofanilli at Northwestern.
I told her that I had participated in the LBBC virtual conference this weekend, and that I had listened to info about bone mets from Dr. Brufsky. I said that he had mentioned that he had had good results from patients who were on either zometa or xgeva, and that I wondered if it was the right time to add one of those. So that led to a short discussion about z vs. x, and I told her that I liked the idea of zometa better because it's every three months. Then I asked her: what do you think of that? So I kind of let her know what I'd heard and then threw the ball back at her to respond. She said she prefers Z, and said -- okay, I'll add it to your appointments and next month when you come for your faslodex shots and your labs, you can just start that as well. (What I didn't do was tell her that I had emailed Dr. Brufsky outside of the conference and asked what he thought of my sclerotic mets and whether he would keep a patient on the same treatment if that's all that was showing up -- which he said that he would. I thought that might push her over the edge after I had "seen" Dr. Cristofanilli.)
So maybe you could approach your MO and put it in terms of the LBBC conference as well and tell her that you learned a lot and went into the virtual get together rooms (whatever those were called) and that you came upon a discussion about different dosing patterns with Ibrance, and that it was interesting -- and what did she think of that? And if you get any info about any studies, you could also try and work those into the conversation?
Worth a try. Good luck with this.
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Awesome BevJen - I know you've been sweating this lately!
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BevJen--- Thanks. I printed the above trial on the 5/2 dosing regime also for reference. I guess it is how you word it. And throwing the ball back to them for approval. A dance. Wonder if you had not brought up Zometa would she have put you on it? Wow, I have a lot to learn. Studying options. Then wording it just so to not upset MO.
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Thanks, Candy, Jack5ie, and Sondra --
Yes, I've been sweating it and I'm really happy to stay on Ibrance for at least another month -- and I hope it will be much longer than that.
This is a strange place to be, isn't it? These "calls" by our MOs truly do affect our worldview on any given day/week.
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Yep. They hold a lot of power.
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Question---- How do you read the pelim results of a trial? The one posted above by RK2020 has been ongoing for 3 1/2 years. How do we see how it is going? Results? I am new at reading trial information.
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Candy,
If you scroll down on the trial page (the one I'm talking about is the one with the NCT number on it that lists all of the requirements/disqualifications/places where the trial is being held) -- you will come to a set of tabs -- one of them says "results" -- click on that tab and see if there is anything there. There's also a date listed within the trial summary that gives endpoints with dates - that's a clue to you.
In cases where there was nothing at the results tab, and I wanted to know, I actually emailed the contact person listed near the bottom of the trial page -- and amazingly, most of them respond.
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Bevjen, it's great to hear you'll still be dancing with us. So does Zometa and Xgeva help the bones heal? I've been off Xgeva for awhile now due to omj. My oral surgeon said he didn't see an issue with me still taking xgeva but my prior MO stopped the monthly shots.
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Simone,
I'm not exactly sure what those two drugs do to the bones, but when I listened to Dr. Adam Brufsky's presentation at the LBBC MBC virtual conference over the weekend, it convinced me that it does something to the bones that is helpful beyond just preventing skeletal-related events. He was talking in terms about how it envelops the osteoclasts in the bone, and I took away from that (rightly or wrongly) that somehow it almost puts the mets in a type of a bubble. (Maybe I'm hallucinating, but that's what I thought he said.)
I'm going on Zometa -- my MO and I talked about it. There are pros and cons of each. Zometa is IV infusion every 12 weeks. I can deal with that. Xgeva is a subcutaneous injection, but most docs are still doing it every four weeks -- they are testing now whether that one can be moved to 12 weeks too, and I'm pretty sure that I've seen people on BCO who do it every 12 weeks versus four, even though that's still being researcher.
The big issue with either, I think, is the possibility of developing ONJ, but Brufsky said that with the every 12 week administration of Zometa, they are seeing basically zero issues with ONJ (versus prior, when it was also given every 4 weeks).
And as for me, they have no flippin' idea why all of my bone mets seem to be sclerotic -- the consulting doc I "saw" via video at Northwestern (Dr. Cristofanilli) seemed to think that I have been harboring bone marrow mets, and that the sclerotic mets are evidence that my current treatment is working on eliminating those. I think this is a likely hypothesis, since I had a one year tumor marker run up before anything at all was seen on scans, and then it was in my liver, and that's what showed.
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Candy, I’m glad to hear you are already established with your second-opinion onc. Fantastic. I think this issue with blood counts, Zarxio, Ibrance schedule, possible Kisqali, the study description on RK’s link, etc. Would be a great reason to schedule an appointment with him/her. It’s not “just to say hi”. It would reset your established patient status so it does not expire and cause trouble later. And yes, those NCCN guidelines are some pretty dense reading with mazes of twisty passages.
Steady as she goes, BevJen. I love the finesse with which you communicated to your onc what you wanted. And I love that you emailed Dr. Brufsky on the sly. Masterful.
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I was under the impression that Xgeva was to help heal as they pumped that right into me when I was in the hospital last November for whatever that was (the sacral fracture). They said between that,radiotherapy,Vit D and stopping estrogen and the rest of it would help heal the lesion. Unfortunately in March the injections were stopped for three months due to Covid19. It is on my list of questions to ask the MO next week (Im seeing the molecular oncologist this time though I suspect that is only because I have scans up and its her shift that day).
Frankly I would be ok with every three months injection as it is uncomfortable for me in the bones for about 24 hours after.
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Simone: I stopped getting Xgeva shots about 6 months ago due to developing ONJ. It has been extremely painful and my oncologist and oral surgeon don't have any ideas about how to "cure" the ONJ. I had a very bad fall getting into or out of the bathtub and didn't break anything so I assume stopping the Xgeva hasn't hurt me. ONJ is a great way to lose weight but a good diet is much better. (I've lost 50 pounds through all this.)
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Wandering, did you just wake up one day with pain, or did it come on more gradually?
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Jens, I just went on and listened to Brufsky and Graff- they did well and were good speaker choices. I really appreciated that Graff threw out some info on stuff in phase 3, though we mostly know about those irons in the fire, it's always interesting to hear which drugs and trials they mention... I wish they had a speaker just on the "what's next" topic and go into lots more details about more drugs. I had not realized how small the PFS numbers were for our main chemos- really unacceptable, but then you have a new type of drug SG, shows us how to target chemo to cancer cells and reduce some SEs and give a longer PFS, so again there is progress
I kinda unexpectedly ended up retired under the covid shutdown, and still have to write up our last research, esp a paper showing that cdk12 is actually a direct player in the MTOR pathway- it has a very central role- and we have identified a new protein that strongly inhibits CDK12 kinase activity, without affecting other CDKs- hope the drug developers can use this to design more selective inhibitors for us, and mostly hope those drugs aren't too toxic
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BevJen-- I looked at the trial posted by RK2020. Says no results yet. Looks like trial ends Feb 2022. I did not see email info for sending a message. I can dig deeper when/if I need to.
I am one of those on Xgeva every 3 months. I started monthly for the first year of diagnosis. Then MO changed to every 3 months to prevent ONJ. She said the change was to prevent ONJ, but I didn't know that schedule was still in trial until I heard Dr. Brufsky's lecture. So hopefully it is still working as well on the 3 month regime. My MO has never discussed changing to Zometa. So we stay on Xgeva and doing injection every 3 months.
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I thought the speakers were going to be posted after Friday. I will go online tomorrow and listen to the lectures again.
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What is all this pussy-footing around, walking on egg shells with MO's? They are your employee, they work for you, you PAY them. Being so timid with them only gives them more power. My mother told me when I was a kid, youngest of three sisters, that when they teased me, pushed me around, if I reacted with fear, they would just do it more. OK, I'm polite. Really. I am. I only got kicked out of a doctor's office once and that was 30 years ago. I was a different person then. I've seen MANY doctors since. What are you so afraid of? My blood pressure is rising and I need to calm down. Yes, you have to consider your wording when asking for something. When I went from 125 mg. Ibrance to 75 mg, I just said, "can I just go straight to 75 mg?" He said yes and he was mean. I've never had a doctor deny a request for a med. They usually jump to comply. That's why there are TV ads for meds. The ads say, "go ask your doctor for this med." I just mentioned Pepcid to my GI doctor last time and he called in an rx before I even asked.
OK, calm now. Sort of.
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Love ya Jaycee. But I have not had those experiences. With all this neutropenia, Zarxio stuff I have only spoken with my MO directly once. The messages have been going thru the nurse, he talks with MO, and relays messages to me. The 1 time I talked with MO about all this was on the phone and she said she had "5 minutes between patients so tell me what you need quickly". The staff acted like I was questioning the doctor and acted miffed. Don't question the docs orders.
And another example of handling our doctors---- I asked my PCP for a script for pain meds---muscle relaxer, not narcotic---for chronic back pain. He flat out refused. Said it would make me more constipated and would be "sedating"---even though I wanted to use it at night for back/leg spasms when lying in bed. I also asked my PCP to increase my Pepcid to twice a day due to lots of heartburn. He finally reluctantly agreed.
In my area, the docs are used to being king and the patients do whatever is ordered without question. And the patients don't suggest to the doctor. Always been that way.
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There are some interesting reports coming out about a drug in trials in Manchester, SFX-01. It's made from a broccoli extract. It's being studied for its potential to overcome resistance to anti-estrogen drugs. Anyone heard of this? Saw a couple of news reports on it. Encouraging since most new reports are on triple negative or HER2 + progress.
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interesting, Elenas- here is your trial description:
Approximately 75% of metastatic breast cancers express the estrogen receptor (ER). Initially, many such cancers can be controlled using endocrine therapies such as tamoxifen, fulvestrant and the aromatase inhibitors. However, resistance almost always develops, ultimately leading to the death of such patients. Endocrine resistance is mediated in part by the persistence of ER negative breast cancer stem cells. In laboratory studies SFX-01 has been shown to inhibit the activity of such cancer stem cells and to enhance the effectiveness of endocrine therapies. The active component of SFX-01 is sulphoraphane, a well-known substance contained in broccoli and other cruciferous vegetables, although the levels of sulporophane in the body after taking SFX-01 will be much higher than those achieved by eating broccoli. SFX-01 is in the early stages of development and this is the first time it is being given to breast cancer patients. Approximately 60 participants (women and men) from 10 European centres will be recruited to the study. At study entry the participants' cancers will be progressing (growing) on treatment with endocrine therapy and SFX-01 will be added to this treatment to see whether resistance can be reversed and the tumour growth halted. The study will also test how safe and well tolerated SFX-01 is in combination with the three different types of endocrine therapy. The study has three different treatment arms (tamoxifen, fulvestrant and AI) depending on which drug patients are taking at the time they enter the study and there will be about 20 patients in each arm.
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And here are some positive early results, they will continue with trials; 5 of 46 patients remained on the drug in combo with tamoxifen or AI for a year, extending their endocrine-sensitive period
Range `of response times was 5-17 months (these are all after I/F treatments); Ibrance was not included in the mix
Biggest SE was nausea- yeah that broccoli derivative (sulforane) is some stinky stuff!- some of us take i3C supplement hoping for this same anti-cancer activity but of course these trial drug levels are much higher
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Thanks for your reply Bevjen. That is strange about your bone mets. Good to hear they are healing. I've heard that ILC is sneaky and some time mets don't show up on scans.
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Simone,
Yes, that's true. Because ILC appears in sheets rather than in tumors, it's difficult to spot on scans. I try to clue in the radiology techs when I have scans that I have ILC so the radiologists will look more closely at the scans. I don't think they always realize this, but I try.
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