Ibrance (Palbociclib)
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Thanks all. I did get a copy of Bestbirds guide when first diagnosed and came on this site. But if it is updated, I need that update. And it has been a while since I read through it. Also I looked at the NCCN guidelines at diagnosis, but have not reviewed it in a while. I will reread both. I know sooo many have had a good run with Ibrance. And I hope I do too. I am starting Cycle 14 this week. One never knows when progression will come. Only God knows. The stats show, on those lovely Ibrance commercials, that the median time without progression with Ibrance is 24 months. Median---average---some longer, but some shorter. I pray that I am Ibrance dancing for many more cycles. I just want a plan for the next step, whenever that comes.
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Wondering how the protocol for involving all the different specialties for BC works. I went to my Primary Doc when I found a lump. She ordered a sono and a mammo. She then set me up for an appointment with a nbreast surgeon. I could not stand this doctor. No empathy. No explanations. She just had a chart telling me why I could not have a lumpectomy, it had to be a mod. mas. and then she said since you have OCD we'll take the other one off too, so no worries about that. She then ordered tests for next day. At the testing facility, her nurse coordinator ran me down with a packet talking about my surgery and included packets to wash with. She scheduled a surgery that I had not agreed to. I not even seen an ONC yet. I had thought that the ONC, explained the disease and decided on a treatment plan for you. I totally had to catch my breath and refused the surgery until I got set up with an ONC. And those are the only two specialists that I have seen.. If I wanted to see a Radiologist, is it my responsibility to set this up? or should my ONC recommend someone? I asked my ONc about Radiation for bone mets. She said oh no, we can't do that.. But that is not her field.
My biopsy report should be in this week to check and see if status of tumor has changed. I need to get all my information lined up. Thanks for any thoughts.
Lakewoman good luck on your scan results. Very sorry about the death of your mother. It's hard I know. Mine died last year a age 87 and even though she lived a long full life I still miss her and feel like an orphan
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Snooky,
Every place is so different...everyone here will have a different story to tell...
I go to a major NCCN facility and everything is coordinated by them. I did have major issues with my med oncologist (MO) on communication and not listening to me but it turned out he was having major personal issues and is no longer there. He was arrested for trying to strangle his estranged wife.
Others can chime in and give you their perspective.
Gumdoctor
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Exciting that you had a chance to go to Belize. It's on my bucket list. I was there in 1964 - yes 1964. It was pretty primitive back then but the water and diving was first class. Good for you.
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Snooky and Gumdoctor
I think the ONC should not be isolated in their practice. My ONC works in a practice with other Dr.s. He also told me that he meets with Dr.s from other practices. (I'm in Florida), so Moffit, Florida Cancer Specialists, radiation doctors etc. Meet once a week and discuss and share difficult cases. I remember one time I was the patient they discussed and the treatment was coordinated using three different doctors. The gynecological ONC did my hysterectomy, port placed by Florida Hospital and radiation at Fl cancer specialist. it would be nice if we all had a single point of access with numerous specialists, researchers, etc. at our disposal.
I find that my SE vary from month to month. I start cycle 20 tomorrow. I find that I'm tired during the second and third weeks and up until the end. It takes a few days for my body to rebound on my 7 off days. Each month is different sometimes I have more energy than other times. This cycle I start on 75mg. I started with 125 mg and reduced to 100 after I realized that I would be on this medication for a long time and that the next cycles might not even have this much QOL. I'm praying that this medication is effective for us for a long time and a cure is found. I'll be comparing 75mg to 100mg this upcoming 21 days.
My hair thinned a lot at first. Then it leveled out. It's thinner than before but not bald.
Take Care
Tanya
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Hi y'all,
I'm popping in to post a link to a story (DailyMail, of all places?!) that I found interesting. We've discussed how oftentimes when you progress on I/F, it is due to loss of hormone sensitivity, most often it can be a PI3KCA (activating) mutation, or sometimes ESR1 mutation, etc. And we also discussed a new immunotherapy combo that is coming, Keytruda and Opodivo both are doing some early trials combinng immunotherapy with an EP4 inhibitor, which is basically an inhibitor of prostaglandin E4, part of the pain and inflammation pathway common to osteoarthritis (that is targeted by NSAIDS like aspiriin, ibuprofen, Celebrex, etc) they hope the combo will work on solid tumors that do not respond to immunotherapy alone. It sounds dreamy to be able to take immunotherapy with just what amounts to a fancy pain reliever! But trials not even started yet, and of course there is no evidence if it will even work for ER+ MBC..
This report jumps right in-between those two different topics. The report is on head-and-neck cancers, but what they find is that the NSAIDS work well in that cancer because they target the PI3KCA pathway. So, if you are worried that you might be developing resistance to I/F, you might want to try adding in an NSAID, if you don't already take one... No idea, but it might help. When I read the long list of supplements the naturopath suggested to my onc, she eliminated all of them- except Celebrex, she really encouraged me to take that. And I did for quite awhile, but eventually stopped- worried about how my liver was processing all of these drugs. Now I've decided to get back on the wagon, in case maybe it can push off progression for a bit longer..
https://www.dailymail.co.uk/health/article-6632149...
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That's really interesting Cure-ious. I have been taking a 400mg ibuprofen because the Faslodex shots are causing bone pain at night. I was worried about taking it every night but maybe I shouldn't be? I do have that mutation as I'm on the Bylieve trial after I/F failed for me. Thanks for the info, cheers, dee
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Cure-ious, would a PI3KCA be reported on a Foundation One early on, before resistance to I/F occurs? I had Foundation One and it showed nothing of interest, at least nothing I've read about here. My biopsy was taken before any treatment began. Whether these studies help me or not, they are very exciting.
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Snooky- Your story is outrageous!!! Taking the other breast too, just because of OCD!!! How would she feel if told that. No empathy. I would have felt like slapping her!!! I feel like that now at my computer. And planning the surgery without your consent or chance to ask questions and catch your breath!!!! You should have reported that to administration. I feel the same way about referrals to other specialties. Do we wait for the onc to take the first step with our treatment plan or do we initiate the steps? And if we do want a say in our care, are we labeled a "problem patient"? I feel we are supposed to sit quietly and do whatever the docs say and not question anything. Just my opinion.
Cure-ious- Thank you for the information. I wish I had a brain like yours.... to understand all this. I am filing your post away for future use. This is why I wish I could receive care at a larger research cancer facility. I have RA and pain and inflammation. There is NO communication/collaboration between onc and rheumatologist. I was told by one doc- palliative care- to stay away from ibuprofen due to GI and kidney side effects. That doc told me to use only Tylenol for the joint and bone pain- RA, bone mets, and A/I side effects.
I too had F1 testing at beginning. I will have to review results again, but I too have wondered when/if we progress do we have the F1 testing done again for mutations at that point.
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I wish I could take NSAIDS. But I have reflux. So, no. I'm on AA for one month now. I had a pretty good day yesterday until a major wave of nausea came. My weight is staying stable, good thing that I'm not losing anyone. But my appetite bits not good. Afinitor is a mean drug, and often ineffective. In spite of that it is a common second line TX. I miss Ibrance 😞💞
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Been reading earlier posts and the question of unused meds came up. This is what my pharmacist told me to do. Fill the bottle of pills with water. For four days shake it every now and then to make sure contents are dissolved. Then pour the contents into cat litter, and swish around, and dispose in trash. He said there's no way that the pills can reconstitute and become harmful. In my county, the local fire department (small city) also has a drop off once a year. But as other have said. DO NOT FLUSH.. Hope this helps.
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Curious, your report about NSIADS is very interesting. When I was first diagnosed, I went heavily into research and using alternative treatments, supplements. I became a organic vegan. I never felt so good. I've had clinical depression all my life, it lifted! My HP went way, my thyroid issues cleared up. Oh and the energy that I had.
Please, ladies, I'm not encouraging alternative at all My three sons finally staged an intervention and convinced me to go into the medical community and their standard of care.(I did it because of love them) Now of course, I feel like crap on F/I
But the interesting thing is...….alternative is about getting your body to recognize cancer as non-self and allowing your immune system to take care of it. Exactly where the medical researchers are now. ALSO, using aspirin was hugh in unmasking the cancer cells so the body would recognize cancer as an invader.
I just wanted to share this. And again, I am in no way encouraging alterntive medicine for cancer. HUGS
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Hi! I think there is a study currently going on - Palbociclib With Fulvestrant After Treatment With Palbociclib and an Aromatase Inhibitor. For those of us on Ibrance and Femara, I wonder if it is reasonable to continue Ibrance but switch the Femara to Faslodex. Would this make sense with the likelihood that one has grown resistant to the Femara but not the Ibrance?
I've seen this discussion somewhere here. I remember someone stayed on Ibrance but switched the Femara to the Faslodex. I was wondering if this can only be done in a trial? Also, when are the results going to be posted for this trial? Ha - I am so impatient.
Oh, the next step for second line treatment really boggles my mind! ~Kar
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KarPC-
I read the same thing somewhere on this site, another thread maybe. I don't want to stop Ibrance if the culprit is the A/I.
That is what I mean..... how do the docs determine which drug has become resistant?? I know, I have not had progression yet, and maybe I will have many more cycles with this regimen, and no I don't think I am stressing too much on this. I think it is a valid question.
Cure-ious--- help. What does the research show? What is the SCIENTIFIC approach to changing treatments? Do we do more testing--Foundation One or something else--at progression to chart our next course?
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Hi all -
Time for a cure - thanks so much for sharing your success! So happy for you and appreciate the HOPE
Love from Philly - my nose bleeds are pretty frequent and almost never completely go away... it's not just you!
Nova girl - Itook Ibrance through my radiation also. I specifically asked my onc and rad onc if that was ok and they both said yes - no issue. I've seen others here who said they qeee told to stop so who knows.
Welcome Nell! My side effects are a bit annoying (recurring infections and other oddball stuff) but I'm 1 year on and not much has changed about my life. I would say I've slowed down a bit and say no to stuff more than I used to. Work travel (especially international trips) take some time to rebound from, whereas before I would just need a day to adjust.
I did see my onc this month. We reviewed my PET - which was NEAD - and he said he didn't see a need to continue doing tumor markers with me right now. I will see him in 3 months but he said he may push my scan to 9 months instead of 6! He is also adding zometa (mostly at my request) on the every 6 month program. I'll start that at my next Herceptin treatment. So other than that, I stay the course with I/F, Herceptin and now zometa. I am grateful to be stable
Love to all!
Laure
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i too wondered how the dr would know which drug stopped working. But get this I was on Ibrance. Faslodex AND Femara all at the same time for 11 doses. When I had to have gall bladder out and cancer became stable he dropped the Ibrance. Still on both the Faslodex and Femara. Cant seem to show that in my profile. Ssid there was a small study that showed it could help. Scans last monday showed my tumor shrinking. He said if it keeps shrinking in 4 months i could drop the faslodex and if tumor markers go up he could add the ibrance back in. Im guessing if i dont have progression by then i could always go back on the faslodex. Such a mystery.
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snooky1954, my husband and I owned a pharmacy (retired before diagnosis, of course; neither of us had any prescriptions back then - would sure come in handy now to have my very own supplier!!) and we disposed of the drugs in a similar manner. We'd empty the bottles and vials into a container and fill with HOT water (that way it doesn't take four days!); stir it up until it resembles very colorful mush, empty it into a large Ziploc bag, mix it with shredded paper and throw it out. Our shredder made confetti-sized pieces, not strips, and it was perfect to absorb the water.
You're right that you should never flush or just toss medicines out in the garbage.
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Praying4U, I'll share a bit of my own story -- a very similar one! -- and maybe that will help. I was diagnosed de novo is November 2016. My March 2017 scan picked up small lesions on my liver that needed to me "monitored for possible metastasis." My MO was strongly reassuring that I shouldn't worry; I tried to trust that advice and did sort of ok but my husband (he later confessed to me) was a wreck. Unfortunately, my July CT scan showed that they had grown. My DH and I were devastated beyond words. The MO told us that it wasn't a definite progression -- sometimes just the angle of the scan makes it look like there has been growth but it's not real. We began discussing my next line, but she suggested an MRI to confirm or deny. Hallelujah they were benign cysts!!!
Someone else pointed out ow these wonderful tools pick up everything little tiny thing. Most of the time it's nothing! In our shoes it's almost impossible not to worry ...
I don't know all of your stats, but If you are bone-only I gather progression to liver this early wold be highly unusual.
please keep us posted!
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Snooky, et. al: My local CVS pharmacy has installed a drop box for unused pills. It's designed like a box at the post office - all blue. You don't need to talk to anyone - just drop the pills in the box.
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LaurenH-thank you for reassuring me. I asked my RO about Ibrance and radiation- she also said it was okay. Congrats on being stable:-)
I have had GI upset for a week straight roughly 6x or more an hour. They said my bowels were inadvertently getting radiated and that was the culprit. I was trying to keep up with fluid intake but to no avail because everything was going right through me. I felt fine all last week then on Friday evening I got confused and disoriented. I then freaked out because I thought the BC has spread to my brain (MRI says it’s clear). Anyway, I had to go to the ER for severe dehydration. I felt so silly. Now I’m drinking pedialite and trying to take as much Imodium as I’m allowed.
Wishing everyone good scans and prayers for anyone stuck in limbo or with progression.
Also, my sister sent me this now. It came out today. Did anyone see this? Th creator is a Nobel prize chemistry winner for the science.
https://www.nature.com/articles/d41586-018-06753-y
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Ciaci…..thanks for the story....that was interesting. For my ONC meds., I've been told to bring unopened bottles and unneeded meds to the Onc. They have an organization that donates to other countries that cannot afford the meds. I love that idea. Have a good day.
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Wandering. that's a good plan, nice and safe. Geesh, I flushed things down the sewer for years NEVER thinking about the harm I was doing. Thank goodness I found out several years ago.
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“My MBC is like an un-invited guest. But as long as she is quiet and well-behaved I can tolerate her. Sometimes I even forget she is in my house. But when she acts up and makes trouble I must quickly take action to quiet her down again.”
This is a metaphor I saw on this board several months ago. I thought it was quite apt.
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Candy, I didn't experience any hair loss until my 11th cycle. (Five months after I was switched from anastrozole to Letrozole.). It was steady loss for about three months. Then it stabilized and graduallymuch of it filled back in. I've heard that a few others had the same experience
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Thanks Penny!! The hair loss is freaky. Just running my hand down my hair I have several strands in my hand. And it is noticeably thinner. I have always had fine hair and it now looks like a Charley Brown tree. So far, about 2 months. I hope it does stabilize. My PCP ordered thyroid lab tests, but I think it is the meds. Just weird that it is so many cycles into the med.
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Hi all and a warm welcome to the new posters. I hope all your questions get answered and you feel supported here.
Lauren, woo-hoo on your continued good news. Less scans is more better!
Grannax, so sorry to hear you've had a tough go on AA. I'm praying the treatment gets easier for you going forward.
Cure-ious, thanks as always for keeping us informed.
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Something keeps me from believing this is possible but then I remember that no one thought a cure for polio was possible until it was. So let's just take a moment to pray for these researchers:
https://nypost.com/2019/01/28/well-have-a-cure-for...
https://www.jpost.com/HEALTH-SCIENCE/A-cure-for-ca...I had a PET/CT scan today and will wait to get results next week. For those of you still having to uncomfortably place your hands behind your head, I no longer have to do that. I asked the tech why they stopped and she said the Seimens (sp?) rep asked where their beside-the-body arm rests were when he checked their machine. They were tucked away in a cabinet because the techs never saw a use for them. He told them having hands behind the patient's head didn't serve any purpose. This is way more comfortable, folks! I almost went to sleep!
Love from PatGMc
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Just now cycling back around today, so
Dee, you are correct in that the report says ibuprofen should be very helpful for combating cancers with the PI3KCA mutation, and so keep taking it since you know you have the mutation! Maybe that is why you are responding so well to Faslodex alone! I'm keeping an eye out any future trials with the EP4 drug, which hits the same pathway and they are combining it with immunotherapy for a completely different reason, because it makes the TILS attack the tumor. Now it sounds like it might also make the whole combo work better against Pi3KCA mutations as well..
Muddling- its really rare to have a PI3KCA mutation appear in a primary breast cancer, and super-common for the mutation to arise as the cause of progression. Basically the cancer mutated to turn on the PI3KCA kinase and now its running a different pathway, and no longer cares about estrogen or the estrogen receptor anymore. So 40%-50% of breast cancers that have become resistant to AIs have this mutation. For that reason, it wouldn't help to take the PI3KCA drug as a firstline treatment, you have to wait for the AI resistant cancer to grow and then it is sensitive. They add Faslodex or an AI to the treatments because once you inhibit PI3K (with Alpelisib or Affinitor, for example), then the estrogen receptor pathway can take over again- so the Faslodex is to block the estrogen-dependent growth pathway from re-emerging and driving the growth of the cancer.
And Candy, this is the irony- We take the Ibrance with the Femara with no biomarker or anything in particular that says that we will respond to the drug (just the trials show on average it helps)- so when we are taking Ibrance we have no idea if its actually doing anything in our particular case- and then when we progress, we don't know if we have grown resistant to it yet or not, as again there is no test or biomarker for it. A few candidates but nothing for sure beyond total loss of the RB protein, which is rare. At the last ASCO meeting, they reported finding that in the vast majority of the cases, like 85-90% of the time, when patients progressed on I/F it was for the same reason that patients progressed on femara or faslodex alone (Ie, PI3KCA mutation or ESR1 mutation or a handlful of rarer reasons). The majority of them were still sensitive to Ibrance or CDK4,6 inhibitor. Eventually one gets resistance, but its a lot more common to lose the resistance to the AI after the firstline treatment. So, it makes every sense to continue with the Ibrance or another CDK4,6 inhibitor and move from femara to faslodex. Or keep the femara and ibrance and just add faslodex.
But then when those treatments have run their course, its important to find out if the cancer has developed a PI3K mutation, at least it will be shortly whenever the FDA approves Alpelisib. We probably will all get tested for PI3KCA when that drug is an option. And to remember that if you do get that mutation, it maybe a good idea to add ibuprofen or aspirin or some kind of NSAIDs. And maybe then after that maybe we will be able to benefit from immunotherapy with EP4 inhibitor, and after that hopefully we get a CURE so we can move on with our lives?!...
PS Also, to Grannax and everybody taking AA, the Affinitor hits the same pathway, so if you find that you are having too many SEs on Affinitor, you can try switching to Alpelisib-Faslodex when it gets FDA-approved. That combo also has big SEs (ask Dee!!) but different ones- high blood sugar levels and grade3-4 rashes. You have to go low-carb diet and/or fast at night to drive down the sugar levels in your body (for Alpelisib).
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PatMg - wouldn't this be amazing??? I just saw these articles too and shared with my loved ones! I'll take any bit of hope I can get!
Hair: I have REALLY curly hair. Like super tight curls. I think that maybe the Ibrance and other meds have caused my hair texture to change? It is nowalmost straight in some patches. Very weird! I feel like I don't look like myself. Just had a cut which normally would cause my hair to spring up into tight little corkscrew curls even more. But nope, it is straight! My best friend was looking for me at a restaurant. She was standing right next to me, behind me, and couldn't find me because my hair looks so different.
Makes sense: hair is made up of keratin which is a protein and these meds effect our hormones which are proteins and/or amino acids aka the building blocks of proteins.
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Cure-ious, thanks for that explanation. I'll try to remember it when the time comes. I'll ask to stay on Ibrance and go to Faslodex instead of (or in addition to) letrozole and see how that works rather than ditch it completely for a totally new combination. No telling what he would say, but I can ask, and explain my reasoning.
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