Ibrance (Palbociclib)
Comments
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PatG . I love your post. Just what I needed today. Y90 ROCKS t-shirts, I'll put in the order today. Ha
Well, maybe not today. My mapping is this Thursday, and the first Y90 is April 13th. But, I've been told that it's only after the mapping that my doc will tell me for sure if it's a GO. Everything is happening so fast. I think that's a good thing for me, since the waiting is the hardest part.
Has anyone heard what precautions docs give for after the Y90? It seems like there are different instructions from each doc. I've heard stay away from children, pets and elderly for 3 days. My friend's doc told her to sleep alone (not a problem for me, except for my cat)for a week, don't hold pet in her lap, don't get close to her son for more than 2 hours for a week!!! All I want to know is can I go to my granddaughter's dance recital. I thought the "elderly" precaution was funny because I AM elderly and so are all my friends.! Well, I guess I'll have to WAIT to find out what my doc says.
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Sadie - There is some argument for delaying the use of CDK 4/6 inhibitors. Faslodex is a pretty good drug on its own and there is no way it is not covered ... talk about a proven drug. But you may end up with a delay even if you start pushing now. Push hard. Definitely contact Pfizer for their compassionate use program. You could also try to get into one of the trials, but you may not get the drug.
>Z<
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hi all!
So I ended up with bronchitis but seemingly getting a bit better today. PCP says because my counts are low it's hard for my body to fight off these things. I've always been so healthy that it's hard to believe that a cold could literally just knock me off my feet for a couple of days.
Diana, run with that good feeling!!
Sadieservant, That was my dilemma as well, Faslodex was next for me, but not covered. (>Z< , sorry but there IS a way that it's not covered here, not one single Cancer Agency in Canada funds it. There is a big difference is what is approved compared to what is funded) But I found this link & it may help you get something funded. I haven't had a chance to look into any of it yet. Is there someone at BCCA that looks into this stuff? I am going to try to remember to ask next appt.
Finished up putting in the gazebo footings today. I would post a pic but it looks like a mud pit at the moment.
take care all, cheers, dee
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Thanks Dee.
Yes, I am aware of the patient assistance program. That's the group that contacted me yesterday to see if they could help me. They took the information on my extended health and will contact Pfizer. I know Ibrance is seriously expensive. Not sure about Faslodex.
The question I have, if I need to cobble together money to pay for this, is if this is the best time. Should I hold off in the hopes that it will be funded? Should I wait to see how the latest research with the third option plays out? Is the Arimidex and Ibrance combo going to give me the best outcome? Again my mind is whirling. Does this ever get easier?
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here's my rant for the day:
Supposed to start the 3rd round of Ibrance yesterday. Script dosage got lowered to 100 mg from 125 on Thurs but it didn't get shipped out. Takes 2 days by courier to get to me. Finally got it straightened out today so should be here Thursday. So will be three days behind. Travel four hours to start radiation, get settled in and in position and then the computer programs don't communicate so can't start treatment. Gotta love technology. So travel back home four hours. Will try radiation again on Thursday after the four hour drive again. Also found out the tumour is between seven and eight cm and nerves from my right hip are entwined with the tumour. Will keep taking the pain meds til radiation is over. I'm tired of this crap already and I'm just getting started! Thanks for letting me rant. Prayers to all going thru treatments.
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If money is an issue, there are many hormone suppression meds and some of the most effective ones are already generic. There are four lines of hormonal treatment that have been used for years to control MBC. It's worth reviewing BestBird's guide to consider your options vs what is available. Tamoxifen, for example, is a SERD that blocks hormone receptors much like faslodex.
Hormone suppression drugs are marginally more effective when combined with various targeted therapies like Afinitor, Ibrance and other drugs coming on the market; however, it's important to look at the numbers and remember how effective these therapies are on their own.
Medically, it's not obvious to me that its best to use CDK 4/6 inhibitors (palbociclib, ribociclib, abemaciclib) as first line, even though that is what I did. CDK 4/6 inhibitors have mostly been tested as first line treatments in clinical trials, but I believe that was first a marketing decision and maybe second a medical decision.
The issue in Canada is ... how long is it going to take for these drugs to be approved for second line since the drug companies focus first on their application in the first line setting (for marketing reasons).
One strategy might be to work through the (many) hormone suppression options available, and then try one of the easy oral chemos like Xeloda for a while once those stop working. An alternative to Xeloda is high dose estrogen therapy (believe it or not, look it up!). Both chemo and high dose estrogen can re-sensitize cancer to hormone suppression drugs. And once you have cycled through all those options, you may find that your cancer is sensitive to hormonals again and the CDK 4/6 inhibitors and even faslodex are available. Maybe other drugs as well.
Navigating through cancer treatments is certainly a complicated strategic problem, especially when you take into account was is available and what is paid for in different areas.
I wrote this without looking at anyone's specific treatment history, so forgive me if it doesn't make sense to your specific case. My main point is that hormone suppression alone is a reasonable treatment choice and there are many options to do that. Once the cancer becomes resistant to hormone suppression, there are treatment choices that can re-sensitize the cancer to hormonal therapy. Working through through all that should take long enough for all these approvals and reviews to occur.
>Z<
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Thanks Z
Money does not come into it for all treatment options. In Canada (well, at least in British Columbia) most of the hormone drugs are covered by our provincial health plan. For instance, AIs and Tamoxifen are given to us at no cost. In his initial report my oncologist laid out his recommendations which included starting with Arimidex (I had issues with Femara), then follow with Faslodex if the AI failed and then Tamoxifen. We did begin with Taxol given my current disease load. It failed and I suggested moving to hormone treatment rather than switching to Xeloda as originally planned.
I get why Ibrance is not yet offered under our funded system given the relative recent appearance of this targeted therapy but don't understand why Faslodex is not funded. It has clearly been around awhile and is also something promoted as a good option for treatment. Oh, and my understanding is that unlike Tamoxifen which binds to the receptor, Faslodex destroys the receptor which may enhance it's effectiveness.
I agree completely that the best timing of the use of the CDK 4/6 Inhibitor is unclear. This is my conundrum as I am also not convinced that it is at its best as a first line treatment. However, it may also not be as effective if it is pulled into play far down the line in the series of treatments when the cancer is less responsive to hormone treatment.
I'm also not entirely clear on the funding process. If Canada agrees to fund the drug I suspect that it would then be available for treatment regardless of whether it was first line or second line treatment. There may also be options for clinical trials for second line treatment.
All this to say that I think we are on the same page here Before I shell out lots of money I need to better understand if this timing makes the most sense. Of course, here's hoping that they find a way to fund it without me raiding my piggy bank (or selling a kidney - oh right, not much of a market for that now).
Thanks for the support and interesting discussion.
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that was so sad... I tried to follow Romansma Hope to see how she was doing since there's hundreds of pages from her original post, we live near each other and have similar lives it seems, only to follow through and piece together that she is gone! Omg. My heart! It's so unfair!
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Sadiesservant, I had the conversation about Faslodex almost 3 years ago with my last MO, it's still not funded in any province, so if I were a betting person, I would say it's not going to be funded anytime soon. I don't know why, but I can ask my new MO & see what she has to say about it. Were you on letrozole or brand name Femera? I was on letrozole the first time around & it was horrible. So this time I was given Femera & what a world of difference. BCCA pharmacy wasn't happy about it, but my MO held out for me & I've been on it for 9 months with no issues.
>Z< thanks for your suggestions, that's why we love this thread.
MbMom, rant away! so frustrating, I hope your next session goes smoothly.
Chantel, sorry you had to go through all that only to find out that Hope passed away last year. It hurts my heart everytime I come to this page but I still come here for the support & hope you do too.
cheers, dee
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Oh, Sadie....you have enough on your mind dealing with BC without having to do battle with costs and access to Ibrance and Faslodex. I so hope that you can figure it out.
Has anyone else read the Mayo Clinic "Breast Cancer Book"? It appears to have good, clear data on treatment and drug options. I ordered it online and received it yesterday. Someone recommended it on this site. Sadie, can your onc put your mind to rest about other best options if you cannot figure out access to Ibrance/Faslodex?
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Sadie~ wait to hear what Pfizer has to say, they are being hit hard with calls and inquiries about when it will come into public coverages and availability, some people still can't get it out there because of studies not ended. The head director of clinical trials said the more people that call Pfizer directly, the faster they will be forced to realize they have to move along faster with production and releasing it into your public health system for everyone. Not just given in trials where there is no guarantee you'll even get the actual drug. He also said he doesn't think many additional ones are starting because of such the demand for this drug. He said it's crazy right now , the distribution companies can't even keep up, that is also the reaction the company Novartis is having with the release of Kisqali another Closely related sister drug of ibrance. Hang in there. A lot of people are aware of this issue for using this ibrance as second line and not first only . Which is another problem that is occuring. Praying for a speedy resolution!
I am off for blood work and lovely shot of Xgevea! Yuck. At least it's not the scan.... this time, but.....next time it willbe! Keeping you all close in prayer! ~M~
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Chantal - we loose too many people. There are some very tough discussions going on elsewhere in this forum at this very moment... It's important to stay positive, but I like to see Hope at the top of this thread. Reminds me every day we are fighting for our lives. It's important to respect and remember all the ladies who trained our doctors so that we might thrive. I think we're turning a corner, but we have a huge debt to Hope.
Micmel - Your perspective into the machinery behind drug distribution is absolutely fascinating. I look forward to reading each of your posts on this topic. Kisquali is game changing precisely because it has the same efficacy as on the same population. The drug companies, to get their return, need to get their drug into clinics first. Once a clinic gets used to Kisquali or Ibrance, they are unlikely to switch because they know the drug. Voila ... the market works in our favor. Finally.
Ibrance has been proven very very effective in a second line setting in a major clinical trial, paired with Faslodex. No question there, really.
Sadie - The Canadian system does a cost benefit analysis for these drugs. Faslodex is marginally more effective than tamoxifen, however, at 100X the cost ... is it worth it? I don't have a problem, on a societal level, with saying no to the cost of faslodex in exchange for broader access to healthcare The US makes a different calculation primarily to drive US drug development. For that reason the US leads in drug development and it drives a huge sector of our economy. Different calculation, also reasonable. Really no perfect way to do this.
I also think the benefit of these cutting edge drugs is overstated ... there are a lot of good options you do have access to. Managing your medical budget is a key factor and I firmly believe that Ibrance is the best place to spend it. I'll be visiting Vancouver this summer for complementary care not available in the US. Canada is light years ahead of us in complementary oncology because the FDA protects our pharmaceutical industry like precious only child. Lots of effective treatments don't make it through the approval system because they are not proprietary and can't be monetized. Canada, and BC specifically because of its wealth, does much better in this space, but you do have to pay for it yourself. PM me for some ideas if you are interested.
>Z<
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Joyner - I've read them all. The best guide, hands down, is written by our own Bestbird. PM her to request it. Here's a thread about it.
>Z<
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Z, I agree on the Bestbird document, and I do have it, thanks to recommendations on this site, perhaps from you. I like the Mayo Clinic book, too. It helps me to read much of the same material written by a different voice...seems to sink in better. Thanks!
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Have any of you lovely ladies started with Ibrance and Letrozole but changed to Ibrance and Falsodex? I had 3 glorious years on tamoxifen, very few side effects, before last fall. After progression my oncologists decided upon letrozole and Ibrance. I am on my 6th cycle now and seem to be stable but there were areas that lit up on PET that they believe to be inflammation rather than new areas. I believe that because since starting this combo my body is stiff, achy following with lots of fatigue. Trying so hard to figure out of its the combo or the letrozole.
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Info from Oncology Business Review about another Ibrance "cousin" making its way into our world:
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Pat, this is all great stuff and so encouraging to see rapid expansion of available hormone treatments. Thanks for your vigilance on all of this!
-Lynn
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Lynn, we're going to live to speak of the old days when breast cancer once took people's lives! I believe! Let's keep on dancing!
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I was thinking today about how odd this breast cancer journey can be. My first BC diagnosis in 1994 was ER & PR Negative (no checking for HER2 in 1994). The second was ER & PR & HER2 Positive, a very small tumor. The surgeon told me I'd never need to worry about that one again, that if I ever had a problem, it would be from the first. Then came the chest wall metastasis in 2012 - ER & PR Positive, HER2 Negative. The bone biopsy in 2016 was the same. I'm so thankful the surgeon was wrong and that Ibrance is here for me. And I'm thankful it's here for all of you.
My prayer is, should my daughter's Triple Negative BC recur, that it will have morphed into ER Positive. My biggest prayer is that she never faces this again (She's 9 years out this month) and that my granddaughter never walks this path. She will be checked at 18 to see if she carries our BRCA1 genetic mutation. I keep watching the PARP inhibitor trials which are showing more promise for ovarian so far, but who knows how they can be tweaked to give great results for BC?
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Pat~ God bless you and your precious family. Everyone here is always in my prayers. The strength I think you gain as a breast cancer patient, is such a special gift that many don't get ever in life. But I really wish we never had to receive it facing such a mean battle. I only want peace and health for us all. We so deserve it. The battle sometimes gets to be to much to carry. That's when I fall down, if it wasn't for my family. I'd never get up again. You all help everyday. You may not realize it. But you do. So thank you Pat, andfor everyone for allowing me to know I'm really not all alone. ~M~
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teacher911,
My MO says that there isn't any research to support continuing Ibrance with fulvestrant after the Ibrance/letrozole fails. But I believe the two combinations are thought to be equally effective, so switching midstream could be OK? Not sure what the insurance repercussions might be, if the switch would be easily approved.
I did not have as much joint stiffness in the first several months of the letrozole as I do presently. Fatigue level varies. Overall I have tolerated the combo well. (on cycle #11) Hope this helps! MJH
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I'm supposed to be in the hospital today but I'm not. The nuclear camera broke And could not be fixed by today. The mapping for Y 90 had to be rescheduled for next week. So, plan A did not work. Now I'm on plan C which is actually better than plan A or B!
We MBCers have to be flexible. Plan C is the mapping is April 13 and the Y 90 is April 17 at a better hospital. So, I am choosing to be happy about the changes.
I'll let you know how it goes.
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My platelets went down to 118 after two weeks on Ibrance. My hemoglobin went either up or down. Can't remember. MO is concerned it's from the cancer and not the Ibrance. She is having me continue the Ibrance but wants to check my blood again on Monday. She said if it's the cancer my only option is chemo again. After almost 13 years of this crap not even sure if I want to. I am so tired of it all. I hope people don't think I am a quitter but just the thought of it is unbearable at this time. I feel good so I am praying she is wrong.
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teacher911, forgot a very important piece of info! You may want to save Falsodex as a second line of treatment after Ibrance/letrozole
cheers! MJH
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Dianarose, my platelets almost always go down at my mid cycle blood work, then come up at end of 4 wk cycle. MJH
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Jan- what about your hemoglobin? Does it bounce back your week off
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Dianarose, my Hemoglobin has been lower than usual the whole time, but still OK. I definitely had lower absolute neutrophils in the beginning, but now they are much more stable. I think the initial doses may have more of an impact. How much did your HGB go down, do you know? Wait till the 4 week draw and see what happens. Some need to wait an extra week before restarting the Ibrance usually because of absolute neutrophil counts. Come to think of it, I had to do that twice in the beginning. My personal opinion is that the Ibrance has lowered your platelets. MJH
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Diane - I think this will all work out, but whatever your choice you will get support here. I am just so glad you are feeling well. It is a very good sign.
>Z<
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Hi All,
I heard from Pfizer Patient Assistance today. No decision has been made by my insurance provider but Pfizer wanted my signature on an insurer generated form to assess the request for funding of Ibrance. I found this encouraging as it was specific to Ibrance (not a generic form) which, in my view, means that they have dealt with this issue before and it will not be a flat out no. My oncologist needs to submit two pages of justification but hopefully I will know soon.
Keep your fingers crossed for me! I know this process makes side effects seem like a piece of cake
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hi all!
Sadiesservant, glad that you've had some success with Pfizer. I did a study with them not long ago & they seemed to be very patient oriented (which they should be) but they really wanted to know how they could help patients & one of the things I stressed was drugs being available at minimal cost to those of us with no extended health care when our agencies don't fund them. I hope they listened.
I am still very sick & the trial will not let me not take Ibrance to give my WBC & neutrophils a chance to fight this infection, so they have added an antibiotic to my ever growing pile of pills. Scares me sometimes. Plus they want me to have my scheduled pamidronate infusion tomorrow. I got it postponed for one day, but I'm sure I will scare all the other patients with all my coughing & hacking even though I will wear a mask.
take care all, cheers, dee
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