Ibrance

leggo

Are there any Canadian Stage IV ladies getting this drug? I don't qualify as this wouldn't be a first line treatment for me, and I'm Her2 positive. After reading some posts in the Stage IV forum, it seems like quite a few ladies are getting it that don't meet the requirements.....according to their bio lines anyway. Just curious if any ladies in Canada have oncs that have found away around the rules (prior treatment, Her2 status). I certainly don't begrudge those getting treatment if they don't meet the criteria, but it does seem unfair that I can't find a single person in Canada that's getting it unless they meet the very strict rules. I guess I'm hoping I'm wrong but I need to get my information ducks in a row. I really don't want to look like a fool when I discuss this with my onc. 

Edited to clarify....I mean having it prescribed....not whether or not it's covered by Health Canada. 

208sandy

Ah leggo - timely discussion for sure - I have been told by my onc (last week) that first of all Ibrance (palbo) has not been o.k.'d for use in Canada yet and if it were it wouldn't be allowed unless it is first line treatment so I wouldn't qualify - I am seeing her again on March 30 and will take her on to BCO boards to read all about how our American sisters are getting it approved left, right and centre - I don't know if it is ever going to be approved for Her2+ because don't know if it was ever on a trial but here's hoping. As for getting it approved in the Provinces who knows but I do know I can't afford the $10,000 per month and would hope that the company would allow compassionate use - guess we'll have to wait and see. Meanwhile if anyone in Canada has gotten this not on a trial please check in!!!

LindaE54

Yes, timely discussion.  I saw my Onc prior to the FDA approval and questioned her at that time.  She said she wasn't sure if it was going to be used as a first line or not but 208Sandy clarified that point.  I'm seeing her on the 18th of March and will bring it up again.  I will also ask her if she knows if it is available for compassionate use.  Who can afford US$10,000 a month?   That's ridiculous.

Linda

leggo

I'm getting really worried about my friend. She's not getting anywhere trying to get Ibrance as it wouldn't be her first line treatment. Opposite actually....last chance. I see my onc next week where I can ask what the deal is with the dramatic difference between Canada and the US, and hopefully he'll tell me he'd be willing to prescribe and take her on as a patient. Taking another shot here to see if any Canadians that are HER2-/ER/PR+ have gotten it despite previous treatments. like I mentioned previously, would like to be armed with info before asking.

Bumping....anybody?

LindaE54

Leggo - I have to apologize - I went to see my Onc today and totally forgot to ask about Ibrance.  I had it on my list of questions and one thing led to the other, and only remembered in my car.  Sorry.

Linda

leggo

Linda, you're so sweet! Please, please, don't apologize. Not your problem! I'm seeing my onc on Tuesday. He's a little more forthcoming than most, so hopefully he'll tell me what the scoop is. I'd hoped to hear from someone in Canada getting it so I could compare their pathology and prior treatments to my friends', but I'm just going to ask anyway if he's willing to see her if there's a chance he would prescribe it. I see you're Her2- as well, so I'll report back what I find out. I think I might as well ask about myself (Her2+) while I'm at it, as I see there is someone on the Stage IV forum that is positive and is getting it as well. Seems odd, but I'd like to find out why. The US seems to be prescribing it arbitrarily, so I'll see what he says about it's use here in Canada, so we can compare notes. Again, thank you for even thinking of it.

Does anyone know if it passes the blood brain barrier?

leggo

Linda, I just noticed you were from Quebec. Got a question for you. I'm heading out there for a Canadiens game in a bit and we've been checking out restaurants. Have you ever been to that blind place, O.NOIR? Any recommendations for dinner in Quebec? Wanted to eat at Chuck Hughes' place, but the reservations are booked three months in advance!!! 

LindaE54

Leggo - Never been to O.Noir but it souds interesting.  I haven't been to downtown Montreal in quite a while.  I worked 30 years there but that was 6 years ago.  There is one place I enjoyed very much and my sister still goes once in a while.  It's called FireGrill on Stanley Street.  It's also within a walking distance from the Bell Center.  Other than that, I have to admit I'm not up to date.  Enjoy your little trip.

Linda

leggo

Thanks Linda, I'll check it out!

LindaE54

Leggo - I got a reply from Health Canada saying it is up to the pharma Co. to approach Health Canada to get it approved.  (no kidding!)  They suggest I contact Pfizer. 

Have you heard anything new?

Linda

208sandy

Linda - how interesting that we have to go to the drug co. to get approval - doesn't sound quite right does it - I am seeing my onc on Tuesday and will once again broach the subject of Ibrance (which makes her quite crazy but.....). BTW I was born in Montreal and lived there for the first 25 years of my life - it will always be home to me - we used to stop at the bakery in St. Sauveur on our way to the cottage and on our way back from skiing, etc. in those days there was only one bakery in St. Sauveur (the 50's and 60's) sure everything is very built up now - my late sister lived on Bark Lake for many years (she retired there) my parents had a place near Weir during the 60s.

LindaE54

Sandy - it must have been the Pagé bakery which still exists (in front of the church, right?).  I live 2.4 km from it.  Oh yes, the village changed quite a bit but still very nice.  I love it here.  I was born in Montreal and worked 30 plus years in downtown Montreal.  There's a café where I sometimes go for lunch and they have old pictures of St-Sauveur - memory lane.  Amazing how this little village still attracts a lot of tourists.

I will also bring up Ibrance on my next visit on 5 May.  Curious to hear what your's will say.

Linda

208sandy

Oh Linda you are so lucky to live where you do - yes it was Page bakery! I also worked in downtown Montreal for 8 or so years - I was with Gulf Chemical (formerly Shawiningan Chemicals) at PVM on the 33rd floor, my sister was working at PVM for the architects that built it on the 10th floor, my father was in the CN HQ building and my brother was at Greenshields also on the plaza at PVM all at the same time - my mother was at home in Montreal West breathing a huge sigh of relief that we were all away and working (hee!)

I'll post again Tuesday after banging my head against the wall of the oncs office - we've been having this "discussion" about Ibrance for the last three appointments!

LindaE54

Small world Sandy!  I worked for Alcan and started at PVM.  My father worked as a machinist for CN and one of my sisters worked for CN also at the Head Office.  My other sister also worked for Alcan at PVM.

Have a great week-end! - Linda

leggo

Hi Linda. My apologies for the late response. Just got back from your lovely province and just now getting back on the board. 

My onc will prescribe it, but patients will have to pay for it out of pocket. He doesn't think Health Canada will approve it anytime soon as anything other than a first line treatment for hormone positive/her negative cases. He did say that was its intention and where they saw improvement when it was being developed so he wasn't too stoked about it's potential for other cases. Wether or not he's saying that because of its cost or benefits, I don't know and didn't want to push the issue because it doesn't apply to my situation anyway. The young lady that I was asking for, did manage to find an onc to prescribe it for her and the cost was covered through her husband's employer, but she had to beg. I sure hope she sees some benefit. I'm also going to send you a pm.

I just have to say, Montreal is a really cool city! Is it far from you? I can't believe I've lived in Canada my entire life and have only gotten there now! Had a bit of a medical emergency while we were there and everyone took such good care of me. Can't say enough good about everyone there. Your province, and the people in it rock!

leggo

I wanted to add that I read about your pain issues on another thread. I'm so sorry you're in pain. I know it's frowned upon, but I just wanted to suggest marijuana. In my situation, it works the best. I initially went the opiate road, but honestly, the whole experience was a gong show....take an oxy or morphine, get stomach issues, take another pill for that, get nauseous, take another pill for that, get constipated, take another pill....and all while being doped up and as high as a kite. It was ridiculous. After all was said and done, I was sicker, dopey and still had the pain, so pretty much useless. I find when the pain gets overwhelming, marijuana helps a lot, particularly at night, when pain is at its worst. For me, I think it really helps the muscle pain associated with bone mets. It seems when the muscles relax, somehow, the aching, stabbing and pulling is reduced as well. It also helps to keep my appetite up which is quite the struggle for me with the liver mets. All in all, a fairly comprehensive solution to several problems associated with this dam disease. I don't know how you feel about it, but thought I'd mention it in case some of these drugs aren't working for you.

208sandy

My onc told me the same thing again yesterday - only first line treatment and only when it's approved by Health Canada - she said "remember Avastin" - guess we'll just have to see how it all works out in the U.S. and then bring more pressure to bear (if necessary).

DayLily15

hello

i think i need to be interested in ibrance, but im not understanding "first line of " , does having a mastecomy mean ibrance would no longer be "first" ? i have not had any rads,chemo or hormonals yet.

Thank you.

LindaE54

Leggo - glad you enjoyed Montreal.  It really is a beautiful city.  I'm about 80 kms north of Montreal - I rarely go now unless I have to or if I have a lunch date with girlfriends.  I take marijuana once in a while and I agree that it helps!

Sandy - thanks for update.  I read somewhere else you had good results!  Very very happy for you!  Still enjoying the shoes?

Daylily - From what I understand, Ibrance is for metastatic breast cancer hormone positive.

Linda

208sandy

Daylilly - Linda's explanation is right and besides which Ibrance is NOT available in Canada it has NOT been approved.

Linda - yes, still enjoying the new shoes and the fact that my Canadians are in the playoffs!

DayLily15

Thank you LindaE54 and 208sandy - im trying really hard to understand all the avenues of therapy, im so glad you are here to point me in the right direction. i feel like i cant afford to miss a trick or treatment.

leggo

It looks like Ibrance isn't going to work for my friend. She developed a respiratory infection and the treatment was stopped. Doctors still aren't sure if it was because of the drug or not. Also nosebleeds so severe that she's had her nose packed for the last three days. They have no idea why. Shit.

modavie

Hey ladies, I've been trying to collect as much info about Ibrance as possible. I contacted Phizer but they refused to give me information because I was a patient. Then, I spoke to the onco pharmacy and my oncologist. So, here's how it works. There isn't any compassionate program available in Canada however one can join a compassionate program from the USA. The hospital onco pharmacy has to fill out a form requesting Health Canada to approve the medication. My onco told me this was a long shot... Once Health Canada approves, then the hospital onco board has to approve the use. One of the reasons why Health Canada may be delaying the approval process is the cost of the medication. I have a few bone mets and have been on chemo for 8 months now. According to my onco the medication is suitable for me - ER/PR+, Her-. I had a consultation at the Dana Farber hospital where the oncologist I saw also said that I can be put on Ibrance. I was diagnosed with Stage II/III - 2 years ago. I had a complete mastectomy and 6 months of AC+T chemo followed by rads. Before rads started a spot in my shoulder was noticed on a CT scan. Biopsy came out negative but 8 months later on Tamoxifen I started having pain in lower back.... So, yes, bone mets in 4 spots. So, far scans are showing significant improvement. My onco doesn't know how long chemo is going to continue. Those of you with bone mets, what type of treatment are you on?

LindaE54

Modavie - WOW - thanks for the info on Ibrance.  I wonder if there have been prior approval by Health Canada for this kind of procedure.  I'm seeing my Onc on Thursday and will run this by her.  She wasn't aware of this when I saw her last month.  She did ask the hospital pharmacy to look into it.  It will be interesting to compare notes.  Which hospital do you go to?  I'm in the Laurentians and am treated at St-Jerome.

I am currently on Femara for my bone mets. 

Linda

208sandy

I have asked my onc on at least three occasions about Ibrance and all she will say is that "it isn't approved in Canada" and is not approved for any treatment other than what has been on trial so far - she also said that she was afraid that it was like the "much vaunted" Avastin and wouldn't be the miracle drug we all think it is. I do not have bone mets - I have skin mets and some pleural cavity activity and have been Stage IV for two years now - I am presently on Faslodex and it is working - hoping that Ibrance is available when this one stops working and I can either change oncs or find an onc in Ontario who wants to help but unless the drug is approved by Health Canada I don't see things changing.

modavie

I'm treated at the Montreal General soon to be moved to the super hospital - Glen site. At the Glen site there will be a dedicated Breast team and they are also talking about different trials. I'll keep you all posted on my findings about lbrance and if some interesting trials come up.

LindaE54

Many thanks Modavie.  Very much appreciated.

Linda

LindaE54

I went to see my Onc today and discussed Ibrance.  First she was not aware of the approval process through Health Canada.  There is a palbociclib clinical study at the CHUM, Hotel-Dieu in Montreal, but only as first line, which I don't qualify for.  She doesn't see Ibrance approved in Canada for a few years.

Linda

GoldenGirls

My mom's onc mentioned something about it being available in Canada in June. This was a couple of months back when I asked about it as a possible option for her when her current treatment fails. I will be asking him again the next time she sees him.

modavie

Keep us posted GolderGirls. I'm trying to find out more details about the trial at the CHUM, Hotel-Dieu in Montreal but can't find any info on the web. I spoke to my onco and told him about this trial but he wasn't aware either. LindaE54, do you know the name of the oncologist who's leading the trial? Aside of that, my last chemo is tomorrow and then I'm having my ovaries shut down and being switched to letrozol.

leggo

My understanding is that IF and when it is approved, it will be first-line metastatic treatment only. I think if you want it, and have had previous treatment of any kind, you're going to have to pay for it yourself. Has anyone heard to the contrary?