Ibrance (Palbociclib)
Comments
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Jojo, great news! And thanks for the reply to my question.
Dianarose, is there any possibility of getting a small supply of samples from your onc?
Pat, I hope that you're feeling good again!
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I thought this was interesting in light of our questions about whether we'll one day be able to drop our dosage of Ibrance:
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An interesting article about patient assistance for high-priced cancer drugs:
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Cure-ious,
I don't feel like it's early...I've been on ibrance for over a year...feel like it could be half over...and worried about what comes next
Joellen
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Jojo, I'm so happy about your good news! You and so many others here help grow Ibrance's standing as a game changer! We are all proud (though tired) pioneers!
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Finally got my Ibrance scheduled! Spent at least two hours on the phone today. For those who get Ibrance from Prime Care/ Walgreens you should start the process two weeks before you need them as you are most likely not in their new system and no one knows what they are doing. Extremely stressful.
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PatgMc, Thanks for the links to those two interesting articles. I had actually already read the one about high priced drugs and patient assistance in the WSJ this morning. I told my DH, that was the reason the PAN foundation didn't give me the same help this year as they had last year which caused me a lot of stress until I found out Pfizer would provide it at no charge. It's always a case of follow the money.
Faith (in the future).
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Ah, right, Joellen, I see that I was reading too fast- and got mixed up. you are only a month or two behind me. But didn't you say your last scans looked good? So is your concern that you may progress in just a few months? Although the average time to progression in the Ibrance-Femara trials were 24 months, that just means that half of the people in the trial went off in less time, and half went longer than that, with some going on for a lot longer. And if you have progression, the recommendation may be faslodex and another Ibrance-like drug like abemacyclib, you could get quite a bit more time from that with few side effects. Other treatments get more complicated to sort out...
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Faith, that's what happened to me. I'm so thankful for the happy ending for both of us!
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Cure-ious,
My insurance refused to pay for a petscan, which is what I've had every 3 months for 2 years, so I got a ct scan. They didn't have any regular ct scans to compare it to, so they think it's good, but I have to get another this month to be sure.
I thought that if you fail one hormonal treatment, that the others won't work either.
Joellen
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Jojo, your oncologist needs to stamp his/her foot and insist on a PET/CT so they can see if your SUV is diminishing. My onc says things often look the same on a CT when there actually is diminished active cancer. Forgive me for trying to tell you what to do. Maybe you could have the scans less often but get a better idea of where you stand with a PET/CT? It makes me crazy that insurance companies interfere in our care and mess with our peace of mind.
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My last pet showed the mets as inactive. The insurance company denied the pet 3 months ago, saying I had to have a ct first, and then I could have a pet if needed. My doc said everything looked good on the ct, there were just a couple of places they need to watch in my liver so see if there was any growth on the next ct scan. She said the insurance companies have been denying pets for lots of people recently, and they are being very stubborn about it.
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Jojo, I guess I just haven't reached that totally inactive point yet. I know it's a good place to be!
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I'm sure you'll get there!
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In the almost 13 years since I was diagnosed I have only had s handful of scans. How do they tell if it's inactive? Is it when there is no change from the previous?
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Dianarose -
Whereas Pat and I and many here have IDC MBC, you are ILC. Many doctors feel that CT scans are more effective for ILC, others feel that scans are just not worth it for ILC. I think that is why you get few scans and when you do they are CT scans. ILC forms in sheets rather than in solid tumors. PET scans don't see them whereas a very good radiologist can sometimes make out the sheets in a CT scan. But basically ILC doesn't show up well in scans.
Even for IDC type cancer, there are many major institutions, including I believe MD Anderson, that don't to PET scans in part because of the rate of false positives. PET scans are very sensitive and pick up every manner of inflammation. In my case the last PET scan picked up some very mild inflammation in my behind from the an ovarian suppression shot I had gotten 2 months prior! Fortunately we do not get cancer in our behinds so it was easy to rule that out for malignancy. But there are many other issues with PET scans.... SUV levels are not super accurate and difficult to compare from scan to scan, slow growing cancer may not show up, etc... the right scan depends what you really need to know.
I have had long discussions with radiologists and, right now, I do PET scans for some very specific reasons, but there are many situations where I would choose a good CT scan. if I could not get PET scans I am not sure I would care that much. It's a close call between the two scanning techniques and it can depend on the specifics of your diagnosis. The real problem is that neither work perfectly for anyone. Scans are much less accurate than we would like to believe.
>Z<
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Zarovka- my Mo goes by my tumor marker. Even that isn't always accurate but when mine is on the rise it's never been good. With as much cancer I have in my belly and bones the highest it was was in the 200's. So I am wondering just how accurate that is for me.
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Look at this article about Keytruda from a post on the Inspire site:
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Look at this post about Keytruda from this morning on the Inspire site:
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If that link didn't work, try this:
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Joy- amazing article. Wish they would try it with some breast cancer patients.
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I know that you all are going to say "Shut up!!" to me this AM. However, two things.....
I had the oddest thing happen this AM. I had taken my Ibrance capsule, as usual, but it sort of felt a little "stuck" in my throat. Not enough to have the remotest concern. I assumed that it had actually gone down. About 20 min later I did a little (ahem...) burp, and out flew this "smoke" from my nose and mouth!! It was Ibrance powder from the capsule, which was, indeed, stuck in my throat! I immediately drank copious amounts of water to wash the sucker down where it was supposed to be. No more "smoke" after that. So weird. I shall in the future drink lots of water with my capsule. I am assuming, based on its $500 cost, that I probably burped out $75 or so!!!!
On another note entirely, I read earlier on this string where someone had switched from 125mg to the lower dosage and had some extra 125mg left over. Every so often, we hear from someone who is terribly stressed about actually getting the medication in a timely fashion. Do you think that we should have a "shash" (sp?) of extra Ibrance, which we could pass along to someone in dire need? Who would be the keeper of the stash? I stuck poor Cive with the bookkeeping for the Ibrance costs, but that never really went anywhere. Would it be illegal for us to be passing along drugs to someone in need? Just a passing thought....
I will be quiet for the remainder of the day....
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JoynerL,
Yes it is illegal to give prescription medicine to someone for whom the prescription was not written. I can see people who were close to each other perhaps ignoring that, but you could not set something like that up online. Too bad we can't get a refund for unused Ibrance at over $2000 (11,000 cost/21 days) a dose. All of the data I got with the exception of our Canadian friend was around $11,000/month.
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Having promised to be quiet, here I am. Cive, that makes perfect sense to me. Would hate to be stuck in a drug bust for trying to be helpful!
Yes, my Ibrance is $11,456 per month if no insuranace. Craziness.
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Joyner - I've had the pill stuck in my throat like that. Weird.
No one is going to get busted for sharing Ibrance, whether or not it is illegal. And I think it is a stretch to say it is illegal. The main issue is that a couple of days will not matter. What we all really need to focus on is getting a responsible onc with a reliable specialty pharmacy so our supply is consistent. We have enough to worry about, a couple of days to sort things out doesn't matter much.
I missed 3 days of Ibrance this cycle for one reason or another ... i just went away for 2 days and forgot my meds, just plain forgot one day earlier on in the cycle. That's my worst performance ever. I've never missed more than a day in the past. But I doubt it matters much in the big picture.
Breathe everyone and have a great weekend.
>Z<
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Joellen - After AIs, you can move on to faslodex or SERDs, because they degrade the estrogen receptor, rather than make it functionally inactive. After AIs and faslodex treatments, the thought is that it is time for some treatment protocol (there are several different ones) that includes an mTOR inhibitor (like affinitor or maybe newer versions coming along), which will inhibit the PI3K/mTOR pathway that is driving the growth of the AI-resistant cancer cells- the thought is that this treatment can render the cancer sensitive to estrogen again,and therefore may respond in the future to another AI.
Joyner- your link is what we were chatting about awhile back, that Keytruda works great on cancers that have mutations in the mismatch DNA repair pathway. Some breast cancers have these mutations (maybe mostly triple negative), so hopefully a test for MSH gene mutations appears soon, however there are lots of other ways to try to get immunotherapy to work, and I wish more clinical trials were doing that for ER-positive breast cancer. It's like they are happy to work on triple-negative, where its already successful, than push for the more common ER-positive cancers. One good way would be to include a targeted drug that inactivates the mismatch DNA repair pathway, which would in principle render all cancers susceptible to immunotherapy. There are some drugs that might affect the mismatch DNA repair pathway floating around in early clinical trials, so stay tuned.
Once I tried to take Ibrance without water, while driving, but couldn't get it down- so I had to spit out a $500 pill, what a waste! Z- your three extra Ibrance pills will be so useful! Due to low counts and delays, I ended up with extra three pills, but will use them this month since I'm heading tomorrow for three weeks in europe, and will have to restart Ibrance two days before I get home, so it works out that now I can do that, call in the renewal in the day I get back and get the prescription in time..It's very useful to be able to start the next series on time in case the renewal delivery day falls on a holiday, etc..
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JoynerL, I had the burping thing happen to me also. It didn't really feel stuck, but I burped and out came yellow smoke. Scared me! I mentioned it to my MO's nurse and she had never heard of it. I do drink two large glasses of water when taking the Ibrance. Of course that causes its own set of problems, too many potty breaks and low sodium.
On another note, I'm having a whole lot of dizziness, more than usual lately. Of course the Ibrance, letrozole and my BP meds all cause dizziness and now my allergies are really kicking in. I really hate all this stuff!!
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Cure-ious,
I didn't realize that...I thought falsodex was the same as letrozole. What about tamoxifin? I've never tried it.
Joellen
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Cure-ious - I actually was planning to just keep going and basically have a 24 day cycle, stop for a week and start again ... and hopefully not miss 3 days again. I am on a low dose so I figure a long cycle won't kill me. Well, I don't plan to do this again anytime soon ...
>Z<
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curi-ous: You are correct, it is 11,000/21 or about $500/pill.
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