Canadians, palbociclib and clinical trials

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2017

    Dancingdiva - Good to hear from you. I'm still on Fas but TMs keep on creeping up so MO moved up tests. Been having a swollen tongue on one side for the past 3 weeks, brain scan is clear but now waiting for MIR to have more answers. Still waiting for other tests and results. Enjoy every day and stay in the moment!

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited April 2017

    Hi Everyone,

    Just wanted to share an update as I lost track of this thread. I started Arimidex at the end of March and my MO suggested that I go on Ibrance as well. It took a couple of weeks of back and forth with Pfizer's patient support and my extended health but in am happy to report that I started my first round of Ibrance six days ago with really no side effects. Here's hoping this is the ticket to dry up my lung. Getting tired of the draining!

    I am fortunate to have it covered by my extended health. The cost is astronomical and I do worry that if it is not funded in the next few years it may be out of reach but for now I am happy to have this option.

    Hope you are all well.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2017

    Sadie - that's excellent news!

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  • Hopefulgirl
    Hopefulgirl Member Posts: 73
    edited June 2017

    my financial navigator in barrie advises it s may be soon funded by provincial govt. has anyone else heard that? My extended health caps at 10,000.00 per year. So I technically get almost 2 months and that is it. Navigator says the funding should come this summer as bringing from Pfizer is now cut on as may 31 201

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    hi! I am in a situation too where my husband's company has to make an appeal to have manulife cover ibrance but this was released on the same day it was suggested I switch:

    http://www.newswire.ca/news-releases/pfizer-receiv...

    This drug is too beneficial to not make it available to all- the results of the trial are amazing.

    Good luck to all'

    Maria

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  • Hopefulgirl
    Hopefulgirl Member Posts: 73
    edited June 2017

    Thank you Maris. The link is very encouraging. Might be an Ativan night for me

    image

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    love your post! Very good saying.

    Every night is an Ativan night for me ;).....you gotta do what you gotta do!

    I'm wondering- have any of you had access to PET scans in Ontario??

    Have a nice evening,

    Mari

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  • Hopefulgirl
    Hopefulgirl Member Posts: 73
    edited June 2017

    No I have ever had a PET scan. I have such terrible claustrophobia that I am terrified I will have to have MRI one day. Is a PET sac like a MRI

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  • Hopefulgirl
    Hopefulgirl Member Posts: 73
    edited June 2017

    Hello Ladies; I am looking for help from our Canadian sisters on Ibrance this morning.

    MY company is willing to cover 80% of Ibrance up to the max annually.

    The insurance Co. which is Green Shield is advising that there is a $10,000.00 cap annually with all insurance companies.

    Stated another the way our insurance Company Green Shield is stating: no carriers, including Greenshield on all plans, would cover over the cap and It has to do with the province not covering it.

    Do any of you have full coverage on your health care plan that live in Canada

    I am getting so frustrated and I want to start treatment and I can't get even the first month started.

    Cathy

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    hi! My husband's company is still in the appeal process with manulife but I believe it's 100K per year max not 10K.

    Have you heard of the trillium drug program? I just read about it last night not sure If it can help!

    https://www.ontario.ca/page/get-help-high-prescrip...

    Also- I would absolutely contact Pfizer. I know they do cover a bit if insurer covers majority.

    I'm praying it'll get worked out for you- and for me. I'm staying confident but if we have problems I'm going to take this to the MP and media if not covered. The benefits of ibrance are huge! We're not talking about a headache pill

    Anyway- let's stay in touch

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  • NewGardener
    NewGardener Member Posts: 109
    edited June 2017

    Hi Hopefulgirl,

    Have you contacted Pfizer's patient support program? It is my understanding that they are still working with patients with private insurance to ensure access to Ibrance despite copays etc. Your hospital's drug navigator should be able to help, or you can try calling Pfizer directly too.

    Ibrance still isn't covered by any of the provincial formularies. It is my understanding that the company and provincial governments are now negoatiating price through the pCPA.

    Good luck,

    Heather

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    yes- I just got off phone with benefits coordinator at princess Margaret and ibrance still not on list for Trilliun either- the request has been issued but it's still being reviewed. It's only a matter of time- there are certainly many woman in this boat. Praying that this gets sorted asap. Deep breaths and healthy thoughts it will will work out for all of us xoxo

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  • Hopefulgirl
    Hopefulgirl Member Posts: 73
    edited June 2017

    Hi Bens Mama and Heather;

    Thank you for your quick response.

    yes to all your questions; have been in touch with hospital navigator and I am enrolled and accepted with Pfizer help for 20%. Waiting on approval for the 10K cap from our private insurance, however, company wants to get coverage with no cap for me. so my company is working with green shield to get that coverage.

    I really hope the govt hops is soon.. I heard through the hospital navigator it may be this Aug or Sept.

    Has anyone else heard that information?

    My husband too wants to go to our MP to appeal our case.

    Cathy

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    hi ladies, I just found out Manulife will not even allow this drug to be appealed so I have no coverage. I have a ct Friday and pray I can stay what I'm on at least a few more weeks but my bloodwork has been bad so I don't know....ahhhhhh

    I will call Pfizer in the morning and our MP once I know more.

    Anyway, staying calm....breathing deep...wishing I could drink ;

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  • NewGardener
    NewGardener Member Posts: 109
    edited June 2017

    Hi

    Bens Mama - I hope Pfizer can help you out. And there are other treatment options - ribociclib is another CD4/6 inhibitor with clinical trials ongoing, fulvestrant alone until palbociclib is funded. Do you mind if I ask - did you receive olaparib as part of a trial?

    Hopefulgirl - I think it's just a guess about timing of funding approval. Ibrance is quite expensive and I believe that the negotiating process has already been drawn out longer than usual. The pCODR (panCanadian Oncology Drug Review) approval for Ibrance/palbociclib was back in November (and Health Canada approval was in early 2016...and US FDA in 2015, so we've all been waiting and waiting).

    A group of us (MBCers plus allies) have formed an advocacy group (Metastatic Breast Cancer Advocacy Canada). Earlier this month a couple of us went to see an ADM of Alberta Health to talk about timing, funding and access of new drugs. It was a long process to see her - the instigator first wrote to her MLA (Member of Legistive Assembly) last November. We have a website www.mbcac.ca and our email is info@mbcac.ca if you want to touch base as you contact your Ontario MPPs. Canadian Breast Cancer Network and Rethink Breast Cancer have also been advocating for access if you'd like to contact them too.

    Good luck to you both

    Heather

    PS As noted in the first post, I had to give up waiting for Canada to approve and fund palbociclib...since July 2015 I've been going to a clinical trial in the US to get palbociclib.

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  • Hopefulgirl
    Hopefulgirl Member Posts: 73
    edited June 2017

    Heather what is fulvestrant is this equivalent to Letrozole

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    hi ladies, I just found out Manulife will not even allow this drug to be appealed so I have no coverage. I have a ct Friday and pray I can stay what I'm on at least a few more weeks but my bloodwork has been bad so I don't know....ahhhhhh

    I will call Pfizer in the morning and our MP once I know more.

    Anyway, staying calm....breathing deep...wishing I could drink ;

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited June 2017

    Hi Hopeful,

    If I have this correct, Letrozole (Femara) and Anastrozole (Arimidex) are ER inhibitors that block ER production. Tamoxifen is an estrogen blocker which works by attaching to the estrogen receptor on the cancer cell, making it impossible for estrogen to bind to the receptor. Fulvestrant is another estrogen blocker but it works by destroying the receptor.

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  • NewGardener
    NewGardener Member Posts: 109
    edited June 2017

    Sadie's servant has covered it. Letrozole, anastrozole and exemestane are also known as aromatase inhibitors (AIs)while tamoxifen is a SERM (selective estrogen receptor modulator) and fulvestrant is a SERD (..receptor disruptor). My trial is actually palbociclib plus bazedoxifene, which is also a SERM.

    Heather

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  • Hopefulgirl
    Hopefulgirl Member Posts: 73
    edited June 2017

    thank you Sadie and heather

    My MO referred to an injection to fuse bone mets, maybe she did not use the word fuse, but the injection is given once a month. What is the name starts with an f I believe

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited June 2017

    I'm not on it but I have heard of Xgeva which builds bones. At least I think so. My mets are mostly in my lungs.

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    Hi Everyone,

    IF your insurance company is currently covering Ibrance can you please let me know who the insurer is? I need to put together a list of insurer's who are currently covering the drug.

    Many many thanks,

    Maria

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  • Husband11
    Husband11 Member Posts: 2,264
    edited June 2017

    Could it be a bisphosponate?

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    Hi,

    Heather- the PARP drug I am on is actually Niraparib and I am on it as part of a clinical trial at PMH which is run by a company called Tesaro. It has sadly been halted except to people who were on it as it is being redesigned. This is a drug trial for ppl with the BRCA mutation which I have.

    Hopeful- I'm pretty sure you're talking about Fulvestrant. Bone strengthening meds are an infusion which you get every 4 to 6 weeks and I doubt that's what your MO is talking about.

    Sleep well everyone

    Maria

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  • Ontariogirl
    Ontariogirl Member Posts: 1
    edited June 2017

    Hi Maria My insurance company is Great West LIfe. I had no problem with them covering my Ibrance. They pay 90% and Pfizer picks up the other 10%. There is no yearly cap either. My oncologist told me that Pfizer has a compassionate program if you can't get coverage. They pick up the whole amount. Hope this helps.Stephanie

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    feeling so bummed tonight :(

    Manulife completely denying appeal for Ibrance, offered me a $230 discount per month...thanks.

    Pfizer will cover 20% but this still brings it to $5100/ mo out of pocket. Their compassionate payment program ended May 31st

    Ontario government not adding this yet to drug formulary for coverage from Trillium.

    So....I have a ct tomorrow and please pray for me that things haven't progressed more in last few weeks and that I don't have to make the change..,miracles do happen .

    My energy needs to be spent on joyful moments with my beautiful boy and hubby and family and friends and not in spending 2 days on the phone trying to explain to people that we are not dealing with the flu...

    Also trying to contact Novartis about their rival drug to ibrance Kisqali to see if I can get it off labelbut having trouble getting through.

    If I need this I'll pay the first month and lobby and push as much as possible to have something done about this

    G'nite everyone,

    Maria

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  • NewGardener
    NewGardener Member Posts: 109
    edited June 2017

    Bens Mama/Maria - I hope your CT does show no need to change drugs. I hear you about the time it takes to self-advocate to get access to the best treatments. It can be exhausting. Not to add to your workload - have you checked www.canadiancancertrials.ca to see if there are other trials for CD4/6 inhibitors (Kisqali/ribociclib or abemaciclib) near you? Of course, PMH is the centre of so many trials, your docs may have new suggestions for you too.

    Take care, Heather

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited June 2017

    Maria - I feel for you and wishing you a very boring scan. I'm also ensured with ManuLife and they never, ever wanted to cooperate for Ibrance. To make matters more complicated, they also told me it depends on the employer - some will make it available some won't. Do you have contacts in HR to push this issue? My ex-employer will not cover it.

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    hi everyone, I am soooo happy to say that my husband's employer has worked something out and should the switch to ibrance happen next Tuesday (when I see my onc) it will be covered. Miracles really do happen ;)

    Just read reports of CT and bones, lungs and majority of liver stable but 1 cluster of lesions that is 'probably' 8mm bigger. Radiologist says overall stable disease but seeing as how my liver enzymes have been so nuts (aLp now around 580) I'm not sure what the recommendation will be.

    Going to enjoy this long weekend. Happy Canada day to all of you. I hope you can all be surrounded with love, laughter, joy and hopefully not too much poutine (although I just love it!). I'm Italian so our canada day picnic involves lasagna lol

    Hugs,

    Maria

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  • Hopefulgirl
    Hopefulgirl Member Posts: 73
    edited June 2017

    Dear Maria

    I have been praying this would happen for you and I am so happy you posted this. Miracles really do happen. My employer is working on my behalf with Green Shield so I am looking for good news too. Happy Canada all!!!

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