Ibrance (Palbociclib)
Comments
-
Simone80, Congratulations on your great response! Dance on, girlfriend!
Holly, Yay for the PARP Inhibitors! I predict you're going to be a PARP + immunotherapy star and many more here will follow you!
Love from PatGMc
0 -
Simone YAY for doing so awesome on Ibrance and Prayers to you that the next scan is NED!!!!
0 -
Okay, so shoot me for forwarding an article from the Daily Mail (which I can hardly stand) but I'm putting it here because of the Metformin and aspirin discussions.
https://www.dailymail.co.uk/health/article-7298799...
The aspirin part really swung the decision. I've read studies on the benefit of taking low-dose aspirin for women with breast cancer. The numbers were pretty amazing. I've been taking it for many years and feel confident it has helped prolong my life. No, I've never asked my doctor for permission.
Anyway, these are ideas you can contemplate. We're each in charge of these wonderful bodies God gave us and we get to decide how best to care for them!
Love from PatGMc
0 -
Pat, I am sold on the benefits of NSAIDS, too! I take a daily Celebrex (a COX-2 inhibitor/NSAID) to try to delay progression:
1) It alters immunosuppressive cells, which better exposes the cancer to the immune system, specifically by inhibiting IDO1 expression. IDO1 levels are high in many breast cancers and protect the tumors from immune cell killing. (hence recent trials are combining a COX-2 inhibitor with immunotherapy. We don't get immunotherapy (yet), but the drug should still help the immune system get at the cancer. Ibrance can also help the immune system, so there might be synergy there with NSAIDs.
https://www.aacr.org/Newsroom/Pages/News-Release-D...
2) It suppresses growth of PI3K mutant cancer cells (which makes the cancer endocrine therapy-resistant). Basically, the PI3K pathway turns on COX-2 (which is then used for cancer cell growth, instead of estrogen), so these cells are very sensitive to COX2 inhibition.
https://www.medpagetoday.com/hematologyoncology/ot...
3) it suppresses c-Met. Recent data indicates c-Met turns on CDK2 in cancer that become resistant to the CDK4,6 inhibitors. So, COX2 inhibition should dampen CDK2, and delay progression on Ibrance.
https://www.ncbi.nlm.nih.gov/pubmed/21473289
There is also synergy between COX2 inhibitors and statins, which have been shown to work together decrease the levels of cyclin D1, CDK2, pRb and E2F1, all of which should help the CDK4,6 inhibition.
0 -
I know people take breaks form the Ibrance for various reasons, but has anyone taken a break from the letrozole only? I guess I'm lucky, I went almost two years with minor side effects, but the last few weeks have been horrible, as far as joint pain. My knees, ankles, and even arches are aching. It's gotten to the point where I'm limping, and of course that makes it worse. My oncologist told me to stop the letrozole for a week to see if it helps, but I can't make myself do it!
My daughter takes LoLoEstrin for painful, heavy, periods, and they've stopped. if she misses even one dose, bam! they're back for a bit. So I don't like the idea of messing with the hormonals!!
0 -
Hi Cure-ious thanks for all that info.
I am confused....your MO prescribes or knows that you currently take Celebrex..which is a NSAID (admittedly I had to look up what NSAID's were) I see that they are anti inflammatories...some include Motrin etc...but I was told when I started Ibrance NO IBUPROFEN????
I want to ask my MO to prescribe this but I am afraid she will say no because it's like taking Ibuprofen, thins the blood? Is there something specific I should ask to get her to say yes?
0 -
While still on taxol (about 6wks ago) I asked the Nurse Prac. to prescribe Celebrex for me. I took in literature to ,show her. She said no and was vague about why not. She asked if I knew what a COX2 inhibitor was I confessed that I did not know how it works.
She said that if I wanted I could take Claritin daily but said TAKE IT WITH FOOD for it to work.. She also said you're taking ibuprofen for pain right? I answered yes. She said then you're already getting some benefits of COX2.
I was told months ago when I was on Ibrance to stay away from Tylenol. lol... Onc's all have their own ideas!
0 -
wow. I wasn't told to stay away from either ibuprofen OR Tylenol and I just started Ibrance. So what is one supposed to take for aches and pains??? baby aspirin?
Snooky, are you saying that your NP said that Claritin was a COX2 inhibitor? I didn't know that either.
Putting this on the list to ask MO about.
0 -
Celebrex was the only thing from a long list of supplements suggested by a naturopath that my first onc (now retired) agreed to, and she strongly urged me to take it. It has the strongest anti-cancer activitiy of the NSAIDs and is similar to a strong ibuprofen like one takes to fight inflammation. It comes with a "black box" warning for heart problems, however that is a rare side effect and studies show high ibuprofen has the same issue- my onc felt that the potential benefits in my case would far outweigh the risks. I don't see it on the list of drugs counter-indicated for use with Ibrance.
A baby aspirin is safer, and is a blood thinner as well. I prefer the Celebrex because it works better on my arthritic knee pain (which is significant after seven years exemestane and four years femara!). Ciaci, I feel your pain!! But I would not go off the femara, and remember there isn't a benefit to taking Ibrance if you aren't also taking femara, so it would be like going off of all drugs because of the joint pain.
I've been taking it since March, and so far no problems (knock on wood!) but I would prefer to take one of the newer versions of Celebrex, like the EP4 inhibitor that is used in the immunotherapy trial that kattysmith is on- these drugs target prostaglandins that are further down the COX-2 pathway and do not come with the heart risk issue, however I think those are not yet FDA-approved.
Anyway, for those just starting Ibrance-Femara, I did not take it at the beginning, just decided to add it in after 3.5 years when I had some minor progression and thought it might help to add this..
0 -
Cur ious thanks for the additional info.
BenJen, Yes Claritin is a COX2 inhabitor.
0 -
Cure-ious,
Thanks for the clarification on the COX-2 inhibitor. Another question for you: you posted (in this thread or another? I've lost track) that you would save metformin for a time when resistance occurs to hormonal treatment? Can you clarify this point?
I am pre-diabetic and have been for many years. I just skate by with my glucose numbers, so have tried to address with exercise and trying to control what I eat. However, I talked my internist into prescribing 500 mg of metformin per day to address the pre-diabetes, plus we discussed the cancer benefits as well. Because I was just starting up on Ibrance and didn't want to begin too many things at one time, I've held out on the metformin. However, after 13 years on letrozole, it failed and I am on faslodex with Ibrance now. Now I'm wondering if I should hold out longer on the metformin. All of this stuff on what to add and when is very confusing to a non-scientist like me.
Would appreciate any clarification/reasoning that you care to provide. Thanks much.
Bev
0 -
Ciaci, what I did do once for about six months is not take Letrozole on the week off of Ibrance. The AI causes me all kinds of problems and I just wanted to see if this method made a difference. I might have but, like you, it was scary. I may try it again soon.
There are many people who cannot take NSAIDs, me included. GI side effects are just not tolerable. I take Tylenol daily so that seems ok with Ibrance.
0 -
jaycee, I am like you in that I cannot take NSAIDS: ibuprofen, aspirin, naproxene (Aleve). At one time I was able to take ibuprofen for headaches and pain but developed the allergies in my 30s. So now I take acetaminophen (tylenol) and arthritis strength acetaminophen and even tho it isn't quite as effective for the aches and pains as ibuprofen, it helps.
I see nothing in the Ibrance literature, and was not told by anyone on my medical team or the nurse advocate from CVS specialty pharmacy who calls here to check up on the Ibrance I am takingthat there is a problem taking ibuprofen or acetaminophen with the drug.
0 -
snooky you mentioned about ckaritan benefits does anyone know if this includes Claritan d bc that it what I take for post nasal drip.
Curious..thank you for taking the time to explain all that .i want to print it out and bring ti my MO lol. you are just so awesome we are really blessed to have you here.
Bev...maybe once I get to VA we can double team our MO lol she will relent and give in for things we want to add in to our therapy ?? Lol shes gonna be like..wait another patient just asked about that?? Lol could be a good thing
Wondering if a baby aspirin or even half of one would be good if I would get benefits from that???
0 -
For what it's worth...
Letrozole HALF LIFE is 2 days....as usual we are being OVERMEDICATED....
I took half the dose of the prescribed Letrozole when I was diagnosed without the ibrance. Not only it melted away my 2.5 tumor in my breast BUT there was no progression for 2 YEARS!
Sometimes you have to think for yourselves, doctors have to abide by FDA rules, and pharmaceutical are there to make money, never mind a cure, but we don't have to, because we should all know by now our odds...just saying...
Oh...and taking it for 2 to 6 weeks to reach plasma concentration...well that wasn’t true either in my case. I would have preferred to die if I had to take the Letrozole every day for all those weeks....
.0 -
Frisky, thanks for bringing up the "overmedicated" thought. I always wonder why 125mg Ibrance is standard dose, while many can stay stable for years on 75mg?
For those long term Ibrancers , does ibrance really have an effect or AI's can do the job on it own? Then why we have to take risks of Ibrance's toxicity ? I never able to answer these questions.
0 -
42young, the studies with ibrance compared women on anti-hormonal therapy vs women on the same therapy plus ibrance. They have tested it with both an aromatase inhibitor and an estrogen blocker, faslodex (fulvestrant). The women who took the combined therapy roughly doubled their time to progression.
So, for some women the AI or estrogen blocker alone will work, but with ibrance added it works longer.
0 -
Husband is right, but also you can't make tons of money on $20 @month for the Letrozole for the first couple years vs $12,387 the cost of ibrance, but that's not all. We're not taking into account the permanent damages over all those years. But hey, to each it's own...in cancer care there's no free ride as far as SE and quality of life are concerned. We better be grateful for what we get....right?
This Ibrance price guide is based on using the Drugs.com discount card which is accepted at most U.S. pharmacies. The cost for Ibrance oral capsule 75 mg is around $12,387 for a supply of 21 capsules, depending on the pharmacy you visit. Prices are for cash paying customers only and are not valid with insurance plans.
0 -
Doctors do have to follow guidelines. Since the clinical trial was done with the 125 mg, that is the standard dose they are supposed to begin patients with. This is how my onc explained it to me.
An aromatase inhibitor, like letrozole or Aromasin or Arimidex prevents estrogen from being made, starving er+ bc. Ibrance helps stop the cancer cells from growing and dividing by blocking certain proteins. The combo works together by doing two different things.
0 -
Cure-ious - I'm not in any trial actually. Just going out on a limb on my own. I recently sent my samples out for the Foundation One testing because I'm curious to know which gene expressions I might have. I know ER+ is usually less agressive and ibrance has been an important breakthrough, but as a relative newbie it does seem like all the news lately is about TNBC and HER2+ advances. I'm ecstatic for those women and just hoping we'll be able to see something similar soon.
0 -
Frisky, I get it. I hate what big pharma is doing. But I'm three years plus into Ibrance (all paid for someone besides me) and I am grateful but torn. What about places in the world where patients don't have access to it? What about the years when it wasn't even available in Europe? Canada? Did people die prematurely so money could flow? Yup. We are all thrown into a mess of things we try to understand but can't. Just what a cancer patient needs. More stress. I do stress about it every day but also try to survive as best I can. And maybe help a little.
Is Goldie sure her thermometer isn't broken?
0 -
Thanks Hysband, Frisky & DivineMrsM. I 'm aware of those studies & clinical trials on Ibrance, but just wonder if any MO even recommend AI's alone anymore? I started out with bone mets only, so i thought i can start Arimidex first, then add Ibrance later, but my MO wanted me on both right from the start. Hope he is right & benefits of ibrance will outweigh the risks for me.
0 -
42young...you can refuse to take ibrance right now. Tell your MO you want to use it when and if you progress.
When I took ibrance with Fulvestrant—which would probably be your next line of therapy as well—there was progression after 3 months—which really means it didn't work at all—but my MO prescribed it for another 3 months before we moved on to that other glorious piece of cancer treatment: AFINITOR. OMG, that took the cake as far as insanity is concerned...and I have the AKT mutations, which means that it was targeted for my type cancer—according to my garden variety genius MOs....
well that was not the case either...and I'm being treated at one of the leading breast cancer hospitals in this country by its top researcher..
If I get out of this madhouse alive, I promise to write a book about what we go through, no one out there, remotely suspects what's awaiting them.
0 -
Thanks Frisky. Since i'm stable now, i may discuss with my MO about taking a break from ibrance for few weeks in between instead of stopping it completely.
0 -
Jaycee...by sharing our stories and experiences we are doing the best we can to understand what's going on with ourselves and our TXs.
It's an invaluable service this community provides, because we are not in the dark when our doctors prescribe these medications. Knowledge helps us survive, by preparing us for what's to come based on our community real life experiences. I'm deeply grateful to each and every one of you
42, it's highly probable that your Mo will tell you that your being stable is due to ibrance, and he could be right, you know...but suspending for a short while shouldn’t affect the overall benefit
0 -
My sister just passed away from breast cancer and we are trying to cover costs of her funeral. I have a 25 day supply of Ibrance 125mg to sell to someone in need. My sister did not have health insurance and as you know, her medications were VERY expensive. A 21 day supply of Ibrance costs roughly $12,000.00. I am willing to sell it for half that price. My prayers go out to all of you brave people facing such a horrific illness. God bless you all!!
0 -
Kristen, first of all, I'm very sorry about your sister. I lost a sister to BC many years ago and it was tough. If you are in the US, it is illegal to sell prescription drugs. You probably don't need added legal woes to your already difficult situation. Most oncologists keep a stash of donated meds for patients in temporary need. Maybe give it to her oncologist's office or ask them what they suggest?
0 -
Hello old friends, yes I’m still hanging around here. I was on Ibrance for about 19 months and the SE’s were really bothering me so I asked for a break while we took a trip. I went off, expecting to start again after the trip when my MO said I could just use the letrozole for awhile. It’s been two years now with just letrozole and my lung tumors have disappeared and my tumor markers are normal. My MO says I can start Ibrance again when I progress, probably with Faslodex. At my last visit I asked if he had any other stage 4 patients just on letrozole and he said no. I guess I’m in my own clinical trial.
I think I feel better without the Ibrance but honestly I still feel awful most days. Fatigue, muscle and joint pains and nausea. I’m also feeling lots of anxiety lately, probably the stress of when will it come back. I’ve been thinking of asking for meds for this but then I read all the side effects and think not. Since I already deal with high BP, GERD and heart issues and the side effects of those drugs I take for those, I’m don’t want to add anything else into the mix. There is just no free ride.
So, for those of you having lots of side effects, it could all be from the letrozole. I’m considering taking it just every other day but I’m chicken.
I pray for all of us everyday. May God bless us all and may the researchers find the CURE!
Faith (in the future).
0 -
My onc told me to take Ibuprofen for my joint pain... just throwing that out there, LOL.
0 -
Faith, so good to see you. What about a different AI? Maybe it would have the same SE's, though. I take an antidepressant (Remeron) and an anti anxiety med (Ativan, only 0.5 mg.) with no side effects. Maybe worth asking/trying. I know. Guinea pigs again. I'm always amazed when, on those drug ads on TV, they say don't take this med if you are allergic to it. Well, if you have never taken it, how would you know that?
About the above posts including mine. I guess the mods scan for the word "illegal" and investigate pretty quickly. Someone posted about selling some Ibrance leftover from a deceased relative. I always hate it when something is deleted and the posts after it don't make any sense. Not that uncommon for mine but still ...
0
