Ibrance (Palbociclib)
Comments
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Jaylea,
So glad to hear you are doing the mindfulness study.
I just completed session 4 in an 8-wk mindfulness in-person class. It is extremely helpful to me. I have been exposed to these concepts before but was not ready for them and did not need them like i do now. They mentioned a couple specific apps and said there are numerous apps available.
Looking forward to hearing about your experiences so we all can learn more from you.
Warmly,
V
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Mica: These are interesting ideas about trying a prevent resistance by switching early. You obviously live in a different funding environment than I do. In my province, BC cancer drugs are free, if approved by the BC Cancer Agency but there is a fixed protocol and sequence for using the drugs. Palbo (Ibrance) is not yet funded but should be soon. I get mine from a special access program from Pfizer. It is closed to enrolment so if I went off it, I couldn’t re enroll. Given that I came close to death during Stage 2 cancer while on a taxane and found capcatibine challenging, I find palbo so much easier. I am only on cycle 8 and am awaiting the results a Friday’s CT scan. Who knows, if the results are bad on Tuesday, I will have to switch likely everolimis and estamane. I would lthink long and hard before I choos infusible chem before I had to use it again.
Jo
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hobbes Theres another lady from B.C. who cannot get Ibrance. She's posted on liver mets thread. She's newly DX with bone and liver mets.
So, the way you got to have Ibrance is no longer available to anyone in BC? I'm going to have to look up her name because I'm drawing a blank right now.
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Her name is Vilma65, Hobbes.
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Gumdoctor, I agree about Auroya. A beautiful spirit and so generous with her support.
Mica, your hypothesis is very interesting to me. My former MO was very quick to let me skip a month here and there. He almost seemed like he thought it was a good idea. He used to say (when I wanted to back off a med including Xgeva), "it won't hurt you." He said it so many times, I thought he had read it in some "how to be a doctor" publication. I have only taken a few weeks plus two months off Ibrance and they were variously timed. It did cross my mind that it might inhibit resistance somehow but I am not so into the science as you and some others are. I understand the antibiotic reference because I have built up resistance to several antibiotics in the past and have used them successfully later. I think my new MO is leaning toward Afinitor/Aromasin at progression. I also dread going back to a more traditional chemo. There is one thread where two people are discussing Afinitor with Faslodex and both are doing well with minimal se. I have not found a thread where AA (you used the ee names but I think they are the same drugs) is discussed. Does that show up in bone or liver threads? Interesting discussion of what to do next, a question on all our minds. I'm on cycle 22 (and if you count my time off more like 25), further down the road than many. Anxiety builds.
Hobbs and cure-ious, thanks for adding your valuable insight. I truly appreciate your knowledgeable input.
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There are many BC women who have to pay for Ibrance right now. Hopefully that will change in the next few months. The provincial government will have to approve the additional expenditure for the drug. Pfizer refuses to help these women while it negotiates. The agreed to price in Canada will be far less than rhe price hat American insurance companies pay.
Jo
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I am in my first cycle of Ibrance which fortunately just got approved, if patient meets certain criteria (NOC) establishedby Health Canada. In other words to qualify for HC funding,certain criteria need to be met...This is not the Provincial Government! I had called to check on pricing and it is $6700. for the 21 day cycle! Seems very pricey to me. I wonder what the costs will be once it gets complete approval in Canada...
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janky, in the US, it is over $11,000 for 21 day cycle with no insurance and no assistance. If you are in that situation, though, Pfizer gives it to you for free. If you have drug insurance, you can get assistance with copays which can be quite high as well. Mine is $563 for 21 day cycle. I receive a foundation grant to pay that. I wonder why there is no foundation assistance in Canada. There obviously needs to be.
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Ouch!! Unbelievable! What is a foundation grant? I was told that Pfizer would give a 20% discount on Ibrance if it was not covered, but that is a drop in the bucket for most budgets...I have been trying to figure out how long has Ibrance been around? After Day 16 I still feel good, so hoping I can continue with it as it does seem effective.
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There are three private foundations that assist with drug costs in the US. They are mostly funded by the drug companies. If you think about it, it makes sense. The two I have used only fund US patients. The third, I don't know. Probably only US, though. I did a Google search for "cancer care patient assistance in Canada" and found several promising links including the one below. It takes time and patience but worth it if you find something useful.
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Mica, I am intrigued by your comment about the association between paraneoplastic immune system and response to immunotherapy. Has there been a study that shows that association? If you know of literature that references that, I would love to read it. Can you send me some links or names? I was diagnosed with PMR right before MBC, and my rheumatologist and oncologist both determined that the PMR was a manifestation of paraneoplastic syndrome. I have to admit that you are the first person (other than me) whom I have encountered that has mentioned the term paraneoplastic. I would love to arm myself with suitable information that I can present to my MO.
Hugs and prayers from, Lynne
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Thank you Grannax for connecting me with Jo. Jo frustrating to hear that Pfizer decided to stop funding until the negotiation is over. Janky, so great that the Alberta government is funding it, wonder if out NDP premier will follow (not that they are on any agreement on issues at the moment
) Pfizer do offer 20% off but that's hardly any help. Without the discount they charge 8000$ so it will be 6400 out of pocket!!Jaycee, thank you for the link, I will check it out
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Correction for those who read my post above (which I just edited), about funding for Ibrance in Alberta, Ibrance is funded through Health Canada according to the booklet I have, sorry for any misinformation...
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Janky, how did you get it funded? it's not funded in BC yet. Is there any place to turn to for authorization or just through your msp?
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I will see if I can find out about funding, I was at my follow up MO appt after a biopsy and contrast ct and bone scans. He talked about the Ibrance and made the comment that I was fortunate that he had had it approved the previous week, therefore I did not have to incur the cost - I picked it up at the Cancer Center pharmacy.
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Chani, congrats on your scan results. Wishing you continued success on this protocol.
Hobbes, hope your scans give you good news.
The fact that some folks don't get Ibrance because of the cost makes me crazy. When my MO first prescribed Ibrance there was confusion with the pharmacy whether it was covered by insurance. So DH and I spent an agonizing weekend deciding whether to drain our savings and mortgage the house. I said absolutely no way. DH was inconsolable. That Monday we learned it was covered. I'm still furious for anyone faced with such wrenching choices.
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All- this may be somewhat in the weeds for everybody, but I wanted to mention a recent report that when breast cancer resistance develops to estrogen drugs due to mutation of the estrogen receptor (which is often but not always the case) those mutated cancers often have up-regulated expression of the CDK7 kinase. A new drug inhibitor of CDK7 is in early-stage clinical trials. therefore it is possible that for those with ER mutated upon progression may benefit by changing from (firstline) CDK4,6 inhibitor + Femara to (secondline) CDK7 inhibitor +Faslodex.
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Cure-ious, is that the new drug in the phase III trial I sent the article about a few days back? Did the drug have a name? It would be good to have that information in our tool belts for future (or current) conversations with our oncs. Thanks for the information!
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Cure-ious my F1 report indicates that I have ERS1 alteration and is resistant to AI. Is this the same thing you're talking about? I have not progressed yet so my MO is not changing my TX yet.
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Hi - New to this thread and to MBC but my MO is suggesting that I take Ibrance, along with fasomax and Herceptinx and I am ER+ and her2+. He said the combo (fosamax and Ibrance) has been used in ER+ but Her2- people in the past. There is apparently a clinical trial to test it in her2+ patients but it requires that you have failed a prior chemo to be eligible. Since I am new to MBC and one 1 bone met, we obviously don’t want to do that. ask we are going to try to get it covered of trial. Anyone Her2+ or have insights on using this combo for Her2+
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To the Canadian here. Health Canada does not fund cancer drugs unless you are First Nations or military or RCMP. Other Canadians get their cancer drugs through the provincial health plan. In the four western provinces, cancer drugs are provided free through the Cancer Centres. Each province makes its own decision on which cancer drugs to fund. The other six provinces have a confusing set of programs that depend on your age, income and whether or not the drug is oral or infusible. As of today three provinces are listing Ibrance: Alberta, Quebec and New Brunswick Ibrance is under review in the other provinces. If you live in Alberta and your oncologist prescribed Ibrance you get it at the Cancer Clinic. If you live in Quebec or New Brunswick, you get it through the same route as other oral cancer drugs. If you live elsewhere in Canada, you need to pressure your Minister of Health to fund the drug. I live in BC I get Ibrance free from Pfizer under a special access program but that program closed enrolment on May 31 2017. If you are still confused send me a PM, telling me where you live.
Jo
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Hi,
I've been taking Ibrance for 13 months and my daily nausea is getting worse. Does anyone have a cure for this problem. Thanks much!
Nancy
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Nancy, What dose are you on? Could you go lower? I'm on 75 mg and doing fine. 22 cycles now.
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I'm on 100 mg currently. Thanks for the tip! I will talk with my doctor this week.
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Nancy, my nausea got progressively worse on 100mg which I took for 15 or 16 cycles. At the end I was vomiting just about every day. I found that breaking Phenergen in half gave me some relief without making me too sleepy. I took an Ibrance break while dealing with a seemingly endless bout of the flu and pneumonia, then started on 75mg. I've completed one cycle and started the second and so far, I've had no nausea. Also I have much less fatigue. I pray that you do something to get relief as it's a hard way to live. I even ordered a dozen lovely blue "Emesis Bags" from Amazon. That was a first!
For those of you with heartburn, I've discovered Pepcid AC (duh!) and one dose gives me 24 hours virtually heartburn-free. I still also take Tums because it keeps my calcium in the normal range.
I'm sort of on pins and needles today awaiting some kind of co-pay aid for Ibrance. I've been turned down by the foundations but still hoping to get the meds directly from Pfizer. I had an odd situation where PAN approved me but pulled the grant after one prescription. Looks like they changed the criteria from Net Income to Gross Income. While I pray for my situation, I'll also pray for those of you who have been paying out-of-pocket all along.
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Has anyone heard/read if using Ibrance 75mg EVERY OTHER DAY is effective?
My MO wants to try this next because 75mg daily is still causing my ANC to be too low.
Also I would like to hear from you all at what level does your ANC stay since you have been on Ibrance.
Thanks for your imput.
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Darn, Pat, that change could bite me, too. Have you looked at the other two foundations to see if they also changed the rules? I will certainly need to.
PAF (Patient Advocate Foundation)
CancerCare.org
Pfizer used to use a specialty pharmacy called Advanced Care Scripts to search for available funding. If they couldn't find any, Pfizer paid.
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The half life of ibrance is 29 hours. So, the next day, you still have half of it in you. You take another dose, now you have 1.5 times the original amount in you, and so on. 24 hours later you now have .75 dose still in you and you take another dose, now you have 1.75 in you, and so on. The drug doesn't clear quickly, and builds up in your system over 4-5 half lifes (6 days). Maybe my reasoning isn't correct, but that would suggest to me that you need several days off to get it completely out of your system. That new regimin under testing, of 5 on 3 off, or something like that, sounds more likely to improve counts than taking it every other day.
But, I suppose taking it every second day is about the only way to reduce the effective dosage further without pill cutting or altering the standard pattern of time on and off.
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Joyner and Grannax, the drug is only in phase 1, right now for TNBC and a couple of other solid tumors- its called SY-1365, from a startup in Boston called Syros, and here is a link:
https://clinicaltrials.gov/ct2/show/NCT03134638
I haven't read the actual report yet and the press release did not say whether they are referring to the ESR1 mutation or to some other specific mutation in the ER. Doesn't matter too much right now becasuse the drug needs to move out of phase 1 and we need a trial for ER-positive MBC, but I will check on that when I get access.
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PAF MBC is closed (no money)
PAF BC is open (we can use this fund, I have)
CancerCare.org MBC is closed (they don't have a BC fund)
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