Ibrance (Palbociclib)
Comments
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Hi to all my friends. I have been busy the last couple of days and now catching up on the posts.
Jaylea- Glad you are back home. Nothing like your own bed, right. 10 more days to the 18th--praying for good news and something they can fix and you can eat and drink again.
Gumdoctor- Thank you for posting the pic of Z. Touching that she is smiling and running FROM the STOP sign. God bless her life and all that she meant to this group.
LovefromPhilly- I totally understand your post about feeling like an alien. I was sitting at my desk at work yesterday and stopped what I was doing to just listen to my co-workers and their antics. My workplace is like others I am sure, sometimes like a soap opera. But now I feel different, like an outsider looking in. Who cares about the trivial stuff. Why waste your time on it. It is definitely a weird place we find ourselves in, isn't it. Like the world shifted around us.
So far, I have not wanted a break from here. I don't blame others for taking a break--we all must do what is right for ourselves. Sometimes it is very hard to log on and read of others' sufferings and of the losses. What is in MY future??!! But I feel you all really understand when no one else in my life does. Not looking for pity, but I don't have anyone to talk to like I do here. I laugh, I cry, and I get lifted up from reading here. Bless you all.
Hugs,
CandyZ---good suggestion PatgMc
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Thanks, Lauren, but that was a result from June. The two Pets after that one showed very small progression (my new term: micro-progression). I only took four weeks off each time (a full cycle including the week off) and the research took seven weeks off. My "result" is anecdotal at best.
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Jaycee---WooHoo on the good scan results !!!!!
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What I posted earlier was pasted in from a post from JUNE, 2018. That is NOT a current scan result. I was interested in people seeing the rest of the post from June because of the research posted by Lauren.
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Janet, HOORAY!!!!
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Gotcha Janet - I misunderstood and thus confused others.
Candy - I feel like I should work for as long as I can..... but o reserve the right to change my mind at any moment. :-) and yeah, the trivial is really annoying some days. But sometimes I find it oddly comforting to join in about trivial discussions. It makes me feel normal.
Love to all,
Lauren
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Tim, the situation has recently improved and almost cleared up all the way after applying topical gentamicin at night before going to bed.
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Janet- interesting! Two scans in a row just showing micro-progression? how long can that go on- awesome! Is it worthwhile to add Faslodex on top of the I-F, hopefully get the microprogressions to go away and extend your time on these drugs even further?!!
Lauren, Ths is a very interesting mode of resistance to I/F- but the article says its rare? And we know there are mutations (rather than miRNAs floating around in exosomes) that can give rise to resistance, presumably more commonly, so I guess they need to develop some tests that can tell us when we are starting to get resistance, and why it is happening. Because those who did not develop a mutation can go back on after a break or intervening treatment, its very important to know if its still an option! Of course, if you go out long enough they often circle back to drugs that worked well in the past and give it a try, in case the cancer has mutated back to being sensitive after being treated with other drugs
I wonder if anyone knows about the supposed Ibrance rebound effect-?! there were reports that once we go off of Ibrance, the cancer rebounds and becomes more aggressive, but then I rememeber reading those findings weren't accurate. But in the onclive post of a few days ago, Joyce O'Shaunausee says she uses Abemaciclib up-front because it doesn't cause the rebound effect- so what?!! First I heard of that- IF there is actually a rebound effect from stopping Ibrance, and IF Abemaciclib doesn't cause a rebound (not sure why that would be), then shouldn't we all be going from Ibrance to Abemaciclib to prevent the rebound and see if we get more time from the drug? Another question for my oncologist (who won't know the answer, sigh)...
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Jaycee, I am 33 months into I/L on 125mg the whole time. I have only had 2 weeks off once to recover from pneumonia. I also have micro-progression noted on my scan last month so I am consistent with the study data. (I am not in a trial.) I know it is not statistically significant, but our own little study should be interesting. If I continue to progress I know my onc and I will have the "next drug" discussion. In the meantime, I continue to live in my own little world battling "stuff", reading and praying for all of my cyber friends here, rejoicing in the good news, weeping for the losses, and drawing joy out of everything I possibly can. While others continue to get bogged down in the trivial pursuits of living, we here have learned to sift through the debris and discover what is truly important. I am thankful for the connection.
Chris
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Cure-ious, my MO did mention Faslodex when we were discussing next tx. I don't think she was talking about adding it. She had mentioned AA previously. I'm not sure what she is thinking but I push it out of my mind for as long as possible. Then, (thank you, Chris) I can continue to live in my own little world battling "stuff", and what stuff we have! No trivial pursuits here.
My sister is having cataract surgery on Monday (like the two I had in October) so I get to help her for a change. It feels good.
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Some of the most recent reports shows all 3 cdk4/6 inhibitors to be roughly equal in efficacy in progression free survival, just a question of varying side effects from each. They don't report abemaciclib as being any more effective.
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Congratulations Janet!! I’m so thrilled for your good scan results! Each good result is such a relief, right
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OK, folks. One more time. I DID NOT just have a good scan. People are reacting to a post I made this morning where I QUOTED MYSELF from a post I made in JUNE 2018 when I had a good scan. I went to a lot of trouble finding that post from JUNE (thank you, Pat, for high fiving me because that's how I found it) because I described my theory of taking breaks from Ibrance. That coincided with Lauren's post (this morning right before mine) about some research about breaks from Ibrance. That's why I did it. Maybe no one has quoted themselves before but I know people have quoted others before. The dates are there (in bold type).
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Oh geez duh!!! Okay sorry about that! I was multitasking and didn't see the previous posts and got confused.
"Microprogressions" that is what your current scan has shown?
Last night my dad was asking me about how I am doing and feeling and about my aches and pains. I saw a physiatrist for the first time last week because my right thumb has gotten so bad (and I do a ton of bodywork in my practice) and also because my neck has been bothering me and my left shoulder - also low back...but we didn't have time to get to the bottom half of me.
The physiatrist asked: Has your MO talked with you about what is happening in your neck?
I don't know if folks remember but I had an MRI of my C-spine about a month ago which showed "innumerable metastasis." My MO called me with the results and was calm and suggested I get another bone scan ASAP, which I did. The bone scan showed no new mets.
The physiatrist then told me that my MO had told her that he was unclear if there were new metastasis in my neck. OY VEY!
So basically, when my dad was asking me about it all, I sighed very loudly and just said something on the line of, "Well, I guess if I have cancer growing, then we will deal with it."
I feel like I am maybe sorta a mix of being defeated with all the ups and downs of the cancer dance as well as just going with the flow and not having a serious emotional panic about it. It is what it is and we (my MO team and I) will deal with it and work with it.
Jaycee - I am sorry if I missed this, but I think I read your MO mentioned AA as next treatment line?
hugs to all, Brenda
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Cure-ious, I asked my onc about the rebound effect with Ibrance a few months ago - he is chair of breast cancer at BC Cancer Agency but a man of few words
- who said "No [there is no rebound effect with Ibrance]. Whether that is any consolation I don't know, but I thought I'd mention it. Thanks for the info, I'll ask re Abemaciclib when I see him next0 -
Cure-ious - can you explain what you meant when you said “the article said it’s rare” - I understood the article said that the method that Ibrance uses to resist is rare, compared to other drugs, but it sounds like you are saying that it’s rare with Ibrance?
It’s all so confusing but I I want to make sure I understood your comments.
Love to all,
Lauren
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So Philly - are you saying that your new physiatrist got info from your MO that contradicts what you and your MO agreed following your bone scan, which reported no new mets? I don’t think my brain is fully working today since this is my second message in a row seeking clarification. :-)
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Oh, Philly, don't worry about it. I'm retired and just sit here scrutinizing all the posts. And I invented the term "micro-progression." It makes me feel better to think of it that way. MO has mentioned AA but knows how sensitive I am to SE's and how intolerant I am of them. I refuse to feel bad in order to feel good. At our last discussion, she mentioned Faslodex. I semi-agreed that would be ok and told my onc nurse. She told me how bad the shots are. She is just really honest with me because she has been with me since the beginning. She knows I don't tolerate pain well but that is long term pain. I think I could do the F shots.
Lauren, I will be looking up the "rare" thing in that article. Philly is really lucky that she has two doctors who actually talked to each other. I have none who do that. Well, my former MO called my therapist to see just how crazy I was. He was disappointed.
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Jaycee - LOL. You always make me giggle with your dry humor. So we are fairly opposite in our approach to treatment (I overdo everything and as you said, you refuse to feel bad to feel good) so I’m not sure if you want my input but these Faslodex shots are pretty much a non-event in my experience. Maybe I have so few nerve endings in my butt but it feels like a small pinch and then I really don’t feel anything. Later it feels a bit like a sore knot but only if I apply pressure on that spot, which is fairly easy to avoid. My biggest issue is forgetting to remove the bandaids and then ripping skin when I do. Ouch!
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Reads like folk have been a little confused in the past couple of days! Only natural to jump on any info which sounds like a positive though .... did that myself to be fair!
Think the key is to be calm and measured which is not easy at all.... the ladies who have been here a long time are very skilled at it. We need to keep those around us in the real world calm too, which is very hard when you are the one living it. As my Onc team have told me ‘ think of yourself as living with it, not dying of it... we’ll tell you when it gets to that point”. Great..
So I try to do just that, plus I cannot live with it in my face 24/7. I need to enjoy life! Hence, amongst many other things, been for a regular reiki session with a friend who is a reiki master today. I am the BIGGEST cynic out there, but I always feel so much better when I leave than when I arrived. Frankly I do not care what the thinking behind reiki and evidence is ( unusual for me).... I just feel more relaxed, calm and cared for...so I’ll keep going until I can’t and then she’ll come to me!
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Just a short comment here for those on or considering Faslodex:
I ran into my friend who has been on Faslodex alone for bone mets and we cleared up how long it has been since she started. TEN YEARS!!
May all your little sore butts celebrate that tonight!
Love from PatGMc Z
(Jaycee, you say micro, I say petite progression. Either way, it ain't no big thang. We got this!)
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Hee Hee Patg.......love it0
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lol at all your little sore butts. Lol adorable you are again Pat as always!!!
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Lauren, the article you posted was exciting because it described a very unusual and interesting mechanism by which cancers can become resistant to CDK4,6 inhibitors, where basically cells that have made some molecules of resistance package them up in exosomes (think 'bubbles') that can get out of the resistant cells and into the sensitive cells around it. The observation was made in cultured cells in the lab, but it indicates if this is happening in the body to any significant extent then that it might be a good idea to take a break from the meds from time to time. We would have no way to know how long a break would be needed to clear out the "bubbles" of resistance, because so far there are no blood test or biomarkers to follow to know if and when it is happening. If it is common and happens early in treatment, drug holidays would give time for the bubbles to clear out and 'reset' the cancer to become sensitive to Ibrance once it sees it again.
My point was that other mechanisms can cause resistance to Ibrance, which are relatively well described, and these involve new mutations acquired in the cancer cell, for example loss of the RB protein or up-regulation of other kinases like CDK2 and CDK6. These are mutations in the cancer cells that would not go away with a drug holiday. Apparently eventually everyone will develop resistance to CDK4,6 inhibitors, but how much of the time is it due to mutations arising in the cancer cell, versus how much of the time might it be these "resistance bubbles" that can clear away when the drug is removed, is unclear at this point.
Moreover, there was that report in 2017 ASCO that said that most of the time, at first progression on I-F, people are NOT resistant to the ibrance (at least they don't show the genetic mutations in RB or CDK2 or CDK6), instead the mutations that they see in the cancers that progress on firstline I-F tend to be the same ones they get when people develop resistance to Femara alone,( ie ESR1 mutation or PI3K activating mutations). So maybe it would be a good idea to have a little break, but unless some newer data comes out about this, we can assume/hope that we are still sensitive to Ibrance, and include it in whatever treatment comes next...
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To me (and I am not as much of a scientist as Cure-ious), it is RIDICULOUS to assume patients become resistant to Ibrance and Femara at EXACTLY the same time. Ridiculous. Why doctors continue to dump them both is beyond me. I've been saying this for a while (ask Joyner) but I refuse to quote myself ever again.
Thanks for the long explanation (again) Cure-ious. It may finally be starting to sink in.
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jaycee. If you dont mind my saying, lauren described the faslodex shots exactly how i experience them. 20 months so far and only 1 was painful from a nurse that put in hip as opposed to buttocks. That is optional but she's the only one ever to do that. The clinic where I go has 12 nursesin the infusion room that could inject me. I would rather do the shot once a month then pop pills. Such a hassle.
Gailmary
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Janet, the Fasloxex shots are very do-able. The keys are: a nurse who knows to 1) warm the shots to room temperature before injecting, and 2) inject very slowly (30 sec or more per shot). I always got the same nurse to do my injections, as I had a bad experience with one who didn't know anything about Faslodex. Also, you may want to take Claritin (or the generic Loratadin...cheaper), 1 tablet/day for 2 days before the injection, day of, and for 2 days after. It really helps, and I learned that trick on this site. I paid the price when I didn't take the Claritin (I do take Loratadin)..lots of bone and site pain for a couple of days after the shot. And walk rapidly after the shot for a bit, twitching your butt to distribute the medication. Piece of cake...
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Bless you, Curious! Thank you for taking the time to explain andbring clarity. So grateful for you!
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Ibrance/Faslodex failed for me after 23 mo. I asked my onc if one rather than the other had failed, and he said, "They BOTH failed".
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JoynerL...how is your new treatment....SE, etc. I think you mentioned you are on Xeloda? Is that chemo? I appreciate all those out there with researching MBC and sharing their knowledge.0
