Ibrance (Palbociclib)
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Well, there is a trial on this - the FLIPPER, which showed good PFS on Ibrance + faslodex:
https://www.cancernetwork.com/view/frontline-fulve...
In England the authority that recommends drugs as cost effective for use in the NHS did not put forward Verzenio + faslodex as a combination showing enough promise as a cost-effective therapy to allow it to be used in the NHS (MONARCH2 trial). They are still evaluating Kisquali + faslodex and Ibrance + is up next.
Guess the point is while the stats are good, they aren't a home run for insurance companies or others making the recommendations.
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Sondra- Yeah, but that is because the trial was for firstline therapy, ie not for people who progressed already on Ibrance-Femara, and moreover they took out those whose cancers were already endocrine-insensitive and therefore never had a response. So in those circumstances, the PFS is great of course. But for secondline, the PFS drops dramatically- and you have to infer some of the numbers- for example, the trial of Verzenio alone, which was mostly after people failed on some kind of endocrine therapy. There are trials now to directly compare having Ibrance with the Faslodex or not for secondline, but they are newer trials not reporting out data yet. From the Verzenio monotherapy trial, it seems about 1/3 of people progressing from I-F were not sensitive to CDK4,6 inhibition (we do not know what fraction of those were or were not sensitive when they started firstline), another 1/3 responded but not for long, and a final 1/3 made it past six months. Based on that, it seems more likely than not one remains sensitive to CDK4,6 inhibitors, especially if you responded fairly well to a previous I-F combo. In other words, upon progression on average its more likely that the cancer is only/mostly resistant to the AI, not to the CDK4,6 inhibitor.
And yes, RB loss is one for sure indicator of a lack of response to CDK4,6 inhibition, but this is very rare in MBC and the mutation has not popped up as a way that resistance develops in real life, so RB status seems not much of a factor. A more common marker for lack of resistance is high PDL1 expression (which, on the positive side, indicates the cancer is more likely to respond to immunotherapy)- a few biomarkers were also found indicating the cancers most sensitive to adding CDK4,6 inhibitors tend to express the HER3 and/or FGFR2 genes.
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Hi, I am having a time with sourcing my ibrance. The first month was for a free trial - I'm on week 2 now. Next month it sounds like my copay will be $2500! There are no assistance programs available at this time to lower that. I think the place is called bioplus. They told me to keep calling in hopes of more assistance programs becoming available. Any thoughts on this ?
Also, went to pcp & she thinks I may have celluitus in my lymphadema arm & prescribed bactrim...anyone had experience with that? Man, today was just a total nightmare!
Thanks in advance for any replies...
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Amanda6, I'm so sorry for this anxiety over the cost of Ibrance. I suggest you have your oncology office contact Pfizer and tell them there is no assistance money available. They'll have you fill out paperwork for their Patient Assistance Program and it should be a matter of days before they approve you. You'll need to provide your tax return form.
Your meds will be sent directly from Pfizer.
Love from PatGMc
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pat, thank you !!!
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Amanda6,
"The Pfizer Patient Assistance Program may be able to help patients to receive free medicine if independent charitable foundations or Medicare Extra Help are not available. Patients may also receive assistance in finding alternate insurance options.
Eligible patients may receive up to a 90-day supply of the medicine until alternative options become available. Patients who are unable to secure insurance coverage may be eligible to receive their medication for free for up to 12 months."
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I’ve had cellulitis twice in a LE arm, both times the ab cleared it up. But you do have to keep an eye on it, can be nasty and put you in hospital.
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Hi ladies I do not see a thread for Faslodex? So i am going to post here and bone mets thread.
About 4 days ago my neck and back were hurting thought I either slept wrong or that it was my mets in C7 and T3 acting up but usually that feels like just burning in the spine. Then I got my first faslodex shots Thrusday and last night my spine (where my mets are) and my whole upper back and neck started hurting so bad like not just the spine the musles too is this from the Faslodex?
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Cross posted-- you all are so smart on this Thread--
My sister asked me about how long treatments last, on average, after first line therapy. I mean, I have had 3 1/2 years on first line therapy. I will probably be going to 2nd line soon. So how long can the next therapy last? So how do I find that info? Do you look up the specific drug being used to see PFS stats on that drug? Or is there a rule of thumb that the first line therapy is the longest line, on average?
I know everyone is different. But, just wondered how to answer my sister. And also to think about it myself. I got 3 1/2 years on Ibrance/Letrozole, will the next treatment not last that long, on average??
Thoughts....
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Amanda6 - I am sorry you have the added stress of the $2000 a month copay! My insurance company had me work with Accredo, which is part of Express Scripts and Accredo signed me up for a Pfizer program that covered the $2200 copay. It was not income based and I did not have to submit any financial info.
Nicole - Faslodex - I have not had that experience but also don't have bone mets. Once, the nurse hit a sciatic nerve which created a zinging pain down my butt/leg on that one side which took a few days to go away. Hope you feel better today!
Candy678- great question. I also wonder if you have had 2+ years on first line does this mean your cancer hasn't morphed with mutations, yet? It is so hard for all of us to figure out our personal timeline:/ On my intial redx as stage IV my MO tested for the standard ER/PR and Her2 status along with checking for a PIK3CA mutation. When I asked for further testing (learned about on here!) she told me we will test for more when(or if) I have a progression. I still struggle with the "sitting duck" feeling and doubt I have a day without it coming into my mind but.....and so it goes....
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Amanda6 Jaylea has scads of info for medication assistance.
Candy cureious has posted about treatment types and length of times statistically of course. May God grant your the best treatment and healing
Tanya
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Aprilgirl- I have had small progression. We did a liquid biopsy with Guardant and nothing came up. We are doing a liver biopsy this next Wednesday. I am still on I/L, but with next scans we will probably be changing treatment and my MO wanted the tissue biopsy to direct her next treatment plan.
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Candy, I hope whatever next-line treatment you have it is helpful!
Amanda 6 sorry to hear about the big co-pay. I think you said you are in Canada so the pharmacy landscape is probably completely different. My cancer center handled this through CVS Specialty and I got off easy on the co-pay....which makes me all the more anxious that it works for a good long time.
3 weeks on letrozole and 1.5 weeks since starting Ibrance I'm finding the fatigue mounting....napping nearly every afternoon. Will try to get more exercise and see if that helps, but is this an indication of how things will be from here on out? Grading even short papers seems overwhelming sometimes.
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Candy, best of luck for Wednesday. Where are you going to do your biopsy? ...second line of treatment pfs, another great question, I really want to know
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Prairiesea-I found that the fatigue was worst for me the first 3 months. After that it got much better. Now on cycle 60 at 125, I almost never nap. I do sleep 8-9 hours every night. Hang in there. Do try exercising and going outside to get natural light if you can.
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Candy, When I was 31/2 years on I-F, I had minor progression in a pile of hip mets and a new spot on spine. My MO suggested wait and watch, but I consulted a RO got SBRT radiation to those spots, which gave me another year and a half. More spots came up this year, tho still in bone, so definitely time to switch up treatment. In general, not only does the PFS of a drug go down after firstline treatment, but the fraction of patients that even respond to it goes down as well. The best treatment is used for firstline, to give everyone their best shot. Soon, the SERDs and Enobosarm will head for firstline-only clinical trials, and will need to show the same or better responses than Ibrance-Femara (pharma won't pay to do that until they are pretty sure they have a winner).
But it isn't all a downhill race to the bottom. Whereas many later lines get 7-8 months PFS at best, the Enhertu ADC-chemo PFS was 16 months- much better than most secondline targeted therapies and way better than regular chemo (3-4 months), and that was on heavily treated patients. And sometimes you want to consider not just the PFS but quality of life and overall survival- for example those who do respond to immunotherapy, even if only for some months, usually at least have few if any side effects and get a nice boost to their overall survival, I guess because the subsequent treatments all work somewhat better than they would have otherwise.
With respect to mutations, all progression happens because the cancer has mutated to be able to grow in the presence of the drug. Although a PI3K mutation can make one insensitive to endocrine therapy, that mutation is usually there at the start and does not pop up during treatment, which means you probably don't have that one, because you did well on I-F. Resistance can come from an ESR1 mutation, or up-regulation of the Her2 pathway (both of which are treatable/reversible), but many times its not clear and there is no clear way to pick "next best" treatments.
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Tanya, is jaylea a misspelling by chance? Looked it up, didn't find much. I'd love to find a good info source.
Prairie, I'm feeling some extra fatigue as well, also 1 1/2 weeks in. Take care:). ( I'm in US - NH.
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Candy, in your pocket for your appt on Wednesday. Hoping your MO has a great plan ready for you and the next treatment, or whatever change they make is easy and powerful!
Prarie and Amanda, like Chicagoan, the first 3 months I had the most fatigue. Of course, I have had a dose reduction as well but don't have that same fatigue like when Ibrance was new to me.
Sending you all love, enjoy the rest of the weekend!
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Snow-drop-- I go to a satellite location of the main cancer center to see my MO and do the CT's and MRI's (closer to me). I have to go to the main cancer center for the biopsy with an IR. They do not have IR's at the satellite location. The main center is 20 miles north of the satellite location (thru the heart of a city).
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amanda - I am no longer taking Ibrance (progression), I did start using CBD/THC to help with sleep, pain, anxiety etc. I did tell my DR in case she had any concerns. With THC, only at night, will not use Vape/smoke Nothing really seems to help with pain, but I think the WYLD Elderberry gummies 1:1 THC:CBN (vs CBD) help with relax and sleep. Not legal where I live, so have to travel to friendlier states. One clerk at a dispensiary suggested a Rick Simpson oil for cookies, maybe I will make today. Also trying Tart Cherry (pure, no apple/grape etc) helps with sleep,. I find a concentrate that I dilute more convienent than premixed. Two glasses/day is a lot of juice, but according to this study which someone else posted, it did help with sleep. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5617749/
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My second round of Ibrance at 75mg seems to be going fine, blood work looks good so far, and I am definitely not as tired as I was at 125! I'm still working and running around doing errands (with a mask on, of course) and recently arranged to have our back-backyard cleaned up so we can use it - blackberry vines were having a party out there, apparently.
Got a survey from my hospital stay, and I happily filled it out because I did receive great care while I was there - then the last question was, "How would you rate your overall health?" And I thought, huh. I used to check "Very Good". Well, guess I'll leave that blank for now, sheesh.
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SF Cakes - Glad you are feeling better with the lower dose. I wish my MO would let me go slightly lower to 100mg because I am quite fatigued, but he likes the results from my blood work, so I’m still on 125 mg.
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Still waiting for my next line of treatment. I have been off Ibrance/Faslodex since 4/5. I did get an Xgeva injection though on that day. They are doing all different biopsies because they are coming back inconclusive. May still have to have a liquid biopsy too.
I have a more concerning issue tight now. I have always gotten headaches for years that start from my neck and go up the back of my head and around my eye and ear on the left side only. I would get them for a day or two and then they would go away. Annoying when I would get them which was occasionally, but not debilitating. I had my 2nd Covid vaccine on 4/10. Just a sore arm the first day and then I was sick with fever, chills, body aches and diarrhea. On the fourth day I felt better from that but then I started getting my same headaches on the left side but with more pain and daily. They have not stopped since. I have been taking Advil and using Voltaren that does help but the headaches never fully go away. I can't sleep because when I change positions or lay on my side the pain is there. I have been basically sitting up sleeping which helps a little. Massage does also help. My daughter gives great massages and said that she feels a puffiness on my neck right below my skull that goes away after she massages and I do feel so much better after she does it. I told my oncologist and he wants to send me for an MRI to rule out a brain tumor. I am so scared right now and have been for days. I was hoping/wondering if maybe it could be from the Covid vaccine that maybe it triggered some sort of inflammation in my body that made my already existing headaches much worse. Or I have a pinched nerve. Or cancer treatment withdrawal. Or anything else other than a brain tumor. I'm so worried and have been since early March with all the tests and then the progression, then taken off meds, then Covid reaction. A perfect storm.
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Have you seen a dentist for those headaches? Could be from your jaw joint. I used to get debilitating headaches on the right side. Worse than migraine. Nothing would knock it down. It’s called TMJ, temporal mandible joint. I had 4 hours of surgery on both sides, no more headaches, shoulder pain. He did not wire my mouth closed, but was not allowed to chew for 6 weeks.
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Spookiesmom...my jaw does click when I chew and has gotten worse lately. That sounds terrible though (4 hour surgeries) but I'll take that over a brain tumor any day. I do see my dentist again in mid May I think. If it's nothing more serious I will ask him to check that out for me. Thanks.
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Candy, I am asking because I know the center is far, a round trip and a biopsy would be difficult, safe trip and more important best of luck for good results.
I took 2 weeks off for vaccine, due to very low counts, now my blood test is in middle of my cycle, Should I push for rescheduling my blood test? My MO nurse said it is ok, no change’s needed! But what is the point, this test is for safely starting ibrance, whether blood rebounded during a week off, right?
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Snow-drop-- I have a friend taking me to the biopsy, so I do not have to drive. But, yes, it will be a long day. 2 hours to get to the destination.
I would reschedule the blood test for the week off to see how the numbers rebound on your week off.
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Amanda6 yes misspelling sorry. Jaycee49 NM
Tany
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Snow-drop, my blood tests are always on Day 15 of they cycle. I believe that was standard in the trials.
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Snow-drop, yes, I believe bloodwork is supposed to be done towards the end of your week (or two) off. My specialty pharmacy won't release my next monthly prescription of Ibrance without seeing those labs.
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