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Article in the Times

Just read an article in the Times about breast cancer in general written by Liz O Riordan..a breast surgeon who has breast cancer herself

In the section on mbc..she talks of Ibrance trials giving patients up to 10 months more of life... I found that extremely depressing...is it worth all the suffering of side effects for such a short time ?

Barb xx

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Wow. Can you send a link to the article? I don’t think the pharmaceutical company will agree. I was told I could have a normal life and when Ibrance is no longer effective there are other drugs. We need hope and the oncologists are on top of the advancements. No boohoo for me. Thanks Reenie

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I don’t know how to do that...sorry not technical at all apart from shopping online!!!

Barb XX

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actually I have read this also and I believe on the advertisement for vibrance. But that being said - many people get much longer out it it - I am done with the statistics. Just gonna live for myself

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There are people on here with years of ibrance results so hang on in there and don’t get depressed x

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Well it was like a punch in the guts...I’ve been assuming Ibrance will take care of me for some time but I already have a progression after 10 months..in fact going to see a radiologist this afternoon to see if it can be zapped...it’s just upset me....wish I hadn’t read the damned thing

I’ve been really upbeat recently...doing more and feeling well...doesn’t take much to put me back....also my car just failed it’s MOT

Barb xx

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I'm with you Barb. I'm going to stop reading these articles and studies.

Either the stats are frightening or the hopeful articles aren't in trials that are acceptable by the powers that be.

I'm having one of those bad days so forgive me!

Barb good luck with your zapping! Get that damn cancer out of there.

Love and hugs,

Marianne

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I agree with you lady’s. I was very positive but the more I read the more depressed I become. I’m going to stop reading also.

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Remember that these are statistics, they apply to the mbc group as a whole, not individuals, and include anyone who has ever been prescribed the drug and don’t take into account any other factors. All it means is that statistically it’s a more effective drug for the whole group than the others it’s been compared to for extending the time before disease progression.

There are ladies on this site who have been on ibrance for years, others who only managed a matter of weeks.

Don’t get hung up on the figures just know that it gives time before we need to move to the next drug.

I work in local government and see statistics used everyday. I agree that in their raw form these stats can be very depressing.

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I’m overreacting...sorry ladies

B

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You aren't over reacting. It gets so you don't know what to believe! Geez!

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You aren’t over reacting. We all feel the same when we see figures like that in black and white. It’s horrible how they are so blandly trotted out as though they are fact without proper qualification of what they actually mean for individuals. I’ve had doctors who should know better quote them at me!

As my mum would say, chin up 😊

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Barb, you are not over reacting at all. I remember the day I got this nice little welcome to the MBC Club care package in the mail directly from Pfizer..... It came in this purple bag with a pill case inside of this bigger case and all these pamphlets with smiling/happy women running around in the back yard with their grandchildren. I immediately had a rush of pure terror...first off... in all likelihood since I am only 46..... I will not have the opportunity to see any grandchildren...then when I started reading these pamphlets I cried hysterically. When I read that it would only increase survival by 18 months at the most it was a huge punch in the stomach. I burned all that crap immediately and it was oddly satisfying. I completely understand how you feel. Hugs to you! xx Aimee

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Aimee I'm certainly glad I didn't get any packages like that....all the info I got was from my oncologist. I'm so sorry you had to go through that but glad you got satisfaction from destroying it at least. Take care.

Sandra

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Good grief..that would have freaked me out....thank goodness I never received that

Barb xx

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I got the same! Completely freaked me out too!! The published statement was about delaying disease progression, not survival, but shocking and terrifying none the less. I like the idea that you burned it! Bravo!

I look at it this way... we are each on our own path with our own unique cancer pathology. Treatment is not one size fits all. Our doctors prescribe their best guess for our treatment, and when that no longer seems to do the job (as cancer continually evolves, trying to outsmart the treatment) then we move on to another protocol. And we hope this process carries us long into the future as scientists continue to find better treatments and get closer to finding a cure!

May we all live happily for a long time to come and enjoy each moment to the fullest! Sending love and support to us all!

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I got 2 of those packages. Tossed them. I'm doing well right know, and right now is all we have for sure. That's true for everyone, so I just do what I'm told, and try to find happy and productive moments when I can. On bad days I remember that I'm 7 years into this, but I'm still here. So are you.

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Here’s the thing. No article written by someone not in our circle is worth this trip in the negative. We live on the positive side of this disease. WE LIVE!!!! No one but those of us who share this knows what is possible each and every day. Rock on sweet sisters. Turn a deaf ear to the naysayers.

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I am with you Barb. It is so hard to read things and take each article as the authority. In medicine it is a series of observations and experiments and evidence accumulates over time. I to try to ignore the nay sayers and just think of myself not as an “average” in these studies but as someone who does better than most. I was very disappointed that it wasn’t the case with letrozole and Ibrance as I only got 6 months before I progressed. But no one knows which drug failed me....most think I should have gotten longer from letrozole too. All I can do is be positive about the next line which is taxol and I hope it does the trick for me! I love this group as we have so many mature and thoughtful women who do the best for themselves and have intelligent conversations with their docs.

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Everything you said is so true..

Thank you and all the best with your next treatment

Barb xx

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Dear Barb, You have been very supportive for me, and I am truly sorry you are feeling

discouraged. May I suggest you try some alternative supplements, alongside your

regular treatments? The reason being, one never knows what might help and it

gives one optimism to be trying new stuff, I think. I get my scan and bloodwork

results this week, and if they are positive, it will only encourage me to pile on more

supplements, for the placibo effect if nothing more, lol. Warm best wishes Mary

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Very true Mary...I do take supplements and I’m planning a consultation at the COC clinic in London soon..I’ve sent them my records..can’t just do nothing!!

Barb XX

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Hi Barb,

I read about Dr Riordan and posted a link to an article on here a while ago. You should take a look at her "Jar of joy" speech on YouTube. It's very encouraging. Just remember that your death is not imminent. Nor is mine or many other people's, although I was almost hit by an ambulance yesterday, but that's another story!

Sophie ❤

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My daughter tried to poison me at the weekend by being helpful and washing the mould off a bunch of grapes before putting them in the fruit bowl!! She’s 23 with a first class honours degree!! Thankfully she didn’t manage it 😊

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Oh no! I hope you are OK, Julie. The lorry ahead of the ambulance wouldn't pull over, so the ambulance overtook anyway and nearly hit me head-on as I was coming from the other direction. But I managed to pull over in time. I told my husband that if the ambulance had hit me at least they would have been on the scene! He didn't think that was funny! 😂😂

Sophie ❤

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It just proves you just never know what is going to happen! 😊 But as you said, at least they would have all the equipment on board if you'd needed it! 😂 Jxx

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Yes, that's true Julie. I think I have a bit of a strange sense of humour sometimes. Or maybe it's just my way of stomping on cancer. I once told my husband that I was going to do my best to beat this disease or die trying. He didn't think that was funny either! 😂😂

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That's exactly the sort of thing I would say 😂 I have to work hard to remember that not everyone shares my sense of humour!

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I know! I don't want to offend anyone either! But sometimes I say something that seems like a good idea at the time. 😂😂

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Oh I know exactly how that feels and that unexpected look of shock on the other persons face 😂

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Morning Julie,

Maybe it's because we don't conform to the cancer stereotypes that people have. But we are allowed to have a sense of humour!

Sophie ❤

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I love your sense of humour too...I’ve just been out and realised I’ve got my jumper on inside out...says wobniar across the front instead of rainbow!!!.. am I allowed to blame the meds for that one?!

Barb XX

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Hi Barb,

I would definitely blame your medication! Pull the "cancer card" anytime you like, as I find it works!

Sophie x

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😂

Barb xx

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Hi Sophie, I love your sense of humour. So many here have a great way of punching the situation with a laugh, Barb and Julie among others. Thanks for that, I shall go off to my book group smiling. Fay

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Hi Fay,

Thank you! I hope you have fun at your book group. I am home for lunch before I head back out again shortly.

Sophie x

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I think it’s very funny

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We have a law in USA thattraffic going both ways is to pull over and stop. Probably

would have been a good idea. Glad you were lucky.

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Hi Mary,

Yes, we have the same law in the UK. The Highway Code states that motorists should pull over when safe to do so and allow emergency vehicles to pass. But for some reason, the lorry didn't want to pull over.

Sophie

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Haha...being super brainy doesn’t mean you have common sense..lol

Barb xx

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She was amazed that the mould would still be there even when you couldn't see it anymore!! oh well I really needed to lose a few pounds 😂 Jxx

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Not the way to do it though..a more sensible diet I think!!

Barb xx

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A sensible diet would be a lot less dramatic 😂 Jxx

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Julie, I would just tell your daughter to be a bit more original next time she tries to poison you! Oh and some advance warning would be good too!

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It's usually my husband who tries to poison me, he's that generation who thinks working in a clean kitchen is for whimps! 😂

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Uh oh! Forget about the cancer. It sounds like it's your family who will be the death of you!! Just kidding. 😂😂

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No, I've thought the same for years! I'm always thankful I've got through the week! Probably why having cancer has never got me down! My immediate surroundings are far more of a challenge! Thank goodness they love me, I'd be in real trouble if they didn't 😂😂

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This is just what I need, a nice uplifting, light-hearted post! 😊😊

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I will look st that..thank you...she’s not stage 4 though!!!

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Yes, I think you are right, Barb. But a few things she said really resonated with me and struck a chord. She said that getting breast cancer herself made her see that the way she broke the news to her patients was all wrong. She would say that patients were "lucky" to get a certain type of cancer whereas the truth is no one is ever lucky to find themselves in this situation. So her diagnosis made her more compassionate.

Sophie ❤

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Sometimes it gets to be too much and when I read things like that I get angry. Only God knows my time and I will fight as long as I can the same way we all do. I stopped reading the ibrance trial results because it is too much and I react also. You are not over-reacting. I never thought the damn cancer would come back after 7 years so that didn’t fit the statistics either.

🙏🏻🙏🏻😘the radiotherapy for your liver zaps it out for good.

Hugs and love

Frances

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Yes well mine came back after 24 years!

Barb xx

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20 years for me

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There aren’t many of us that had it come back so many years later...I remember my oncologist at tha time said I could completely forget about it coming back after 15 years!!....wrong....I think it’s very unusual...you’re doing very well though...I’m just a year on from diagnosis although I know I’ve probably had mbc fore years...only discovered due to a vertebral fracture

All the best

Barb xx

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Mine was found by accident as well, due to a UTI. Could have knocked me over. 1992 I had a mastectomy, and chemo. Lymph nodes were clear. I thought it was over. Not.

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I didn’t have anything apart from a mastectomy and some xoladex injections as had a local recurrence on the scar..then nothing until now...terrible shock after all these years

Barb xx

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We can read those articles, but it is not 100% accurate, and we have to be positive and have faith in God

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Hi Barb. Take all of those articles with a grain of salt or better than that don't read them at all. Particularly when the main focus of the article is regular breast cancer and just a blurb on MBC. Ibrance however has never been marketed or shown to extend life directly. Their purpose and marketing is around extending progression free survival time. It for most people is accomplishing that quite well....times for each person varies of course. Eventually all of us will have to move along to the next cocktail and hope for a good long time on each while we wait for the cure. Don't worry we will all be around for a good long while to share support with each other.

Hope your radiation session is doable and works wonderfully for you. Take care.

Sandra

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Thanks Sandra..you always talk sense

Saw radiologist today..he wants a PET scan first to rule out any more liver lesions...eek I assumed there’s only the one on the CT scan

Anyway if there are 1-5 lesions he can zap with SABR radiation..if there’s more then I’ll have to change my drug combo!!!...I have to now wait for pet scan appointment ...hate the waiting as you all know..it’s the not knowing

Barb XX

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Thanks Barb. That would be standard protocol to check for more lesions....the CT though remember is quite accurate in detecting mets in liver so I'm sure you will be fine to get the SABR radiation. We used to do RFA treatments in my endoscopy area so I really support how effective they can be in sending cancer tumors packing.

I overdid it on the past weekend with yard things and had been exhausted and sore the past few days. However slept 16 hours last night and feel so much better today. Just came back from walking my pooch and now going to head out for a bike ride. It's a beautiful day here. Hope you are enjoying some rides with Bugsy.

Sandra

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Oh that’s reassuring re scans...I’m hoping I can have the sabr treatment

Yes I had a lovely ride on Bugsy this afternoon..quite hot so I burnt my shoulders a bit...never learn..blonde hair and freckles so I should have more sense at my age!!

You’re naughty overdoing things but I’m the same...refuse to give in..glad your long sleep helped..sometimes that’s all it takes

All the best

Barb xx

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Glad you got out on Bugsy. Aloe Vera gel will take that sunburn away. I did a 10km ride and I'll likely be tired again this evening but boy it felt great. It's great to not think about cancer and just enjoy life. Heading outside now to cozy up with a good book. Take care.

Sandra

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Enjoy your book...I read all the time

At the moment I’m reading ‘ three things about Elsie’ by Joanna Cannon....it’s hilarious!!

Barb xx

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Me too. I read 4-5 books a week. Right now I'm into summer books based at the beach. Just checked out the one you mentioned and I like funny books so I've just reserved it at my library and I'll pick it up in a day or two. Thanks for the recommendation.

Sandra

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It’s funny and sad at the same time...yes I read all the time...it annoys my husband sometimes..he once said ‘for gods sake get your nose out of that book..you’d think it was War was and Peace’....guess what I was reading?...yep War and Peace...that shut him up!!

Barb xx

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Hey, the way my nurse and oncologist described ibrance is that it doubles the effects of letrozole.

She explained that if letrozole helped for 3 years added ibrance would make it 6.

As we all react differently, is difficult to put any time on its effectiveness. My oncologist has a lady going on 8 years in ibrance/letrozole.

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Well it seems that oncologists have different ideas about Ibrance which is understandable as it’s a relatively new drug

I must say I’m sceptical about the lady on it for 8 years...it wasn’t available then...even the ladies who were on the drug trials are 5 years in...this is what I’ve gleaned from here so I could be wrong

I would love to get 8 years on any drug tbh

All the best to you

Barb xx

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Funny, I didn’t actually hear my oncologist say a woman was on it for 8years( only hear half of what they say in these meetings) it was my husband taking notes, so who knows!!

When I see my oncologist next month I will definitely ask him.

Keep you updated!x

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On this site I've seen several MBC warriors that have had a major reduction of their cancer and some even healed with NED! My Oncologist has told me to expect remission and possible NED after just scattered 4 months of meds (2 cycles were with Ibrance) and a major reduction in my cancer! Not sure where that Oncologist got her information! There are women here who have lived years by using Ibrance!

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I’ve been on ibrance for 3 years so I definitely think it’s worth it and that it can work for longer than 10 months. 10 months is awfully low, in most articles I’ve read it (including ibrance advertising) 24 months is the average they use.

I’ve been lucky on side effects though, I realize many women are struggling 💕

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Reassuring

Barb xx

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Barb....

Remember FEAR is FALSE EVIDENCE APPEARING REAL

Write this on post it's around your home as a reminder.

Also, if helpful, I'm just now discovering how different "brands" of Letrozole have a WIDE range of "Inactive Ingredients" that can cause terrible side effects. For example, I discovered by accident that the TEVA brand caused joint pain and stiffness in my hands as well as blood in my sinus discharge.

Clearly I have a negative reaction to the Inactive Ingredients.

Teva Pharmaceutical fillers:Inactive Ingredients:

silicon dioxide

FD&C Blue No. 2

aluminum oxide

FD&C Yellow No. 5

ferric oxide yellow

lactose monohydrate

magnesium stearate

microcrystalline cellulose

polyethylene glycol

polyvinyl alcohol

sodium starch glycolate type A potato

corn starch

magnesium silicate

titanium dioxide

Now I'm on the Health Accord Pharmaceutical Brand and those side effects from TEVA are gone.

Inactive Ingredient(s): silicon dioxide / hypromellose 2910 (6 mpa.s) / ferric oxide yellow / lactose monohydrate / magnesium stearate / starch, corn / cellulose, microcrystalline / polyethylene glycol 400 / sodium starch glycolate type a potato / talc / titanium dioxide

DEA Schedule: Non-scheduledProduct Code: 16729-034

On this website there are 29 different brands of Letrozole:

pillbox.nlm.nih.gov/pillima...

In closing, perhaps this Breast Surgeon is too left brain wired from having to over develop her left brain to become a surgeon.

Not every female doctor is capable of following her right brain intuition that requires a level of "trust".

Therefore, she is following her dominant left brain wiring, unfortunately she can only process so called "concrete" / literal information based on old dated science research.

I'd be curious to know her thoughts when she finally develops MBC and lives way beyond 10 months.

I doubt she would ever read any of the valuable information on this website.

Just speaking truth.

I discovered this quote online that I'm pondering today:

"Truth is like a Lion, you don't have to defend it you just let it loose."

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Hi Joybe

I was also surprised at the side effects from brand to brand. It made a huge difference for me and I settled on accord for Letrozole. For anyone here struggling, try to change your brand.

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Joy, this is so interesting. I’m on TEVA and have no side effects at all. I also have an autoimmune illness that caused multiple chemical sensitivity. I’m allergic to yellow 5 and Teva is yellow. I will be checking out the other manufactures. It’s getting harder to find Teva. What brand are you on?

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I'm now on Accord Healthcare Brand that is marked LT.

Prior to the pharmacist changing to TEVA, I was on Breckenridge Pharmaceutical Letrozole marked N on one side and L on the reverse side.

I had great results with that from April 2018 to October 2018, however Breckenridge became too expensive for the Pharmacist and he changed to TEVA in October 2018.

I had to switch Pharmacies in January 2019 due to insurance. The new Pharmacy also was providing the TEVA until they ran out in March 2018 and had to use the Accord Letrozole that they had as back-up. I started the Accord April 2019 and by the 3rd week I noticed the pain and joint stiffness in my hands slowly going away.

With each week I am feeling significant improvement. I called the pharmacy and requested that I only receive the Accord Letrozole and they made the notation to provide "only" the Accord.

I know the dyes in Teva caused a reaction in a vitamin D I was taking.

My CBC vitamin D was in a deficit until I stated buying vitamin D w/out fillers from the health food store and my levels increased to the normal range.

All I can say is I have a limited history of taking pharmaceuticals. I can't even take codeine of any kind for pain. I took 2 Hydrocodon 7.5 over a 6 hr. period for a 2 teeth I had pulled back in 2015 and I almost blacked out with my heart racing and could barely walk upstairs to lay down.

I didn't want to call 911 so I flushed my system with water until it was all gone.

I haven't been sick in over 10 years. My MBC was the first time I was diagnosed in March of 2018 after I had fractured my arm and that is when the cancer was discovered. Then I had my first and only biopsy, at the end of March 2018 and my tumor size was 1.3 x 1.2 x 1.6 cm.

After 10 months in January 2019 my new ONC ordered my 2nd mammogram and my tumor had shrunk to 0.8 x 0.6 x 1.1.

In my latest CT scans my bone mets are no longer visible in my hip and pelvis area and no progression in my thoracic, clavicle and the humorous fracture and no new mets.

So the Letrozole and Ibrance are working.

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So true. Let truth loose!

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Very interesting to see that there are so many manufactures of Letrozole. I'm on the one from Accord Healthcare Inc which is simply what I was provided by my oncologist. It's manufactured in Canada and I'm Canadian so I'm sure that's why that's the one given here. However despite that I certainly still have joint stiffness particularly in my hands. It's tolerable but annoying. Thanks for your insight.

Sandra

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Hi Sandra

I’ve had various brands of letrazole and haven’t noticed any difference but that’s just my experience...now I’m wondering if there has been and I’ve not been aware as I hurt all over anyway..maybe ignorance is bliss!!

Barb xx

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Honestly they are all mostly the same active ingredients and unless you are particularly sensitive to a lot of ingredients( I'm not) I don't think it should be that much of an issue. Plus my hand joints are horrible today but I'm sure that's because we are getting rain and it's damp....bad combination for me for joint issues.

Sandra

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Yeah it’s easy to blame everything on the medication

My whole body hurts today because I did a lot yesterday..went to the zoo and walked for 3 hours then rode later...paying the price but that’s not the letrazole!!

Going frock shopping later..my daughters wedding not till September but I’ve seen a dress I like so will snap it up or they’ll sell out and I might regret it...also it’s a pencil dress style so that’ll stop me putting weight on before then!!

Although I’m around the same weight my shape seems to be different...I.e. a bigger waist and no flat tummy any more...ugh

Barb xx

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When I over did it last weekend I felt like that too....my whole body hurt but it was better after resting. I think with bone mets that is going to happen but we have to enjoy life. Hopefully you feel better now.

Hope you had a great day shopping and were able to get the dress you wanted.....actually September isn't that far away really. Plus you are going on vacation soon correct? Italy sounds fabulous. Will you have your PET scan before that or later down the road? Not sure what the wait times are like for you. Take care.

Sandra

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Got the frock and even better...house of Fraser had a promotion day and I got 25% off...my lucky day!!..also got a lovely hat as well...posh Barb instead of scruffy jodhpur wearing barb!!!

The oncology secretary said I should get scan next week but who knows??!!

I hate waiting and I’ll have to try and forget it when I’m in Italy as can’t change anything

Had lunch out today..and a sneaky glass of wine

All the best

Barb xx

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Sounds like you had the perfect day! I'm sure you will look beautiful at the wedding. Exciting time for you and your daughter. Absolutely try and not even think about cancer when you are in Italy. Enjoy the beautiful landscape, food, wine and your family. You are you and cancer is something to put on the back burner and not let it define us.

Sandra

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Thank you Sandra

I will do just that!!

Barb xx

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I certainly understand what you mean and I often wonder what it would feel like without treatment and my sense is it would not feel great either. Also important to understand that it gives women on average 10 months more of progression free survival. Meaning until they needed to move on to another therapy. As you likely know, Ibrance was tested as compared with letrozole or a hormone therapy which before Ibrance we would just be on letrozole. Most cancer therapies are approved on only 3 extra months. In fact there is a drug being evaluated before the FDA that is only offering 1.5 months. There are two ways I chose to look at it. First the 10 months is in many ways a great advantage over what was previously available before having to move on to another even more toxic drug. And second, for each drug we get more time on, there is an opportunity for a newer better drug to become available. I think about all the Her2+ women who suffered through inadequate treatments and then suddenly one day herceptin became available and they were able to receive that new therapy. Hang in there and stay positive. I try to believe I will beat the average and be one of the responders who got far more than the time the drug was approved on. But i get it...it is hard to wrap one’s head around when we feel so awful.

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The 10 months is ibrance/faslodex progression free survival on average (not overall survival). A study also showed about 20 months PFS with ibrance/letrozale.

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Thank you

I just panicked (as you do) and totally got really upset

Barb xx

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Hi Barb and others...

....So many replies, I skimmed, so I'm probably repeating, but yes, Ibrance essentially doubles "progression free survival" (time without progression), e.g. from about 12 to about 24 months ON AVERAGE in combo w/ Letrezole, as a first line treatment, and similar results from Faslo, again as a first line treatment. Here's a link to a doc that shows it graphically...

nejm.org/doi/full/10.1056/N...

If you click on the tab on top that reads "figures/media", scroll down to the first graphs...otherwise just go down several pages in the article itself...

What you'll see is that half of the participants had progression after about a year on just Letrezole, but in combo w/ Ibrance, it was two years before half had progression. Importantly, if you look at the end of the graph, about 1/3 of participants still had no progression after 33 months. I found this encouraging, and in fact I made it well past that duration...

When I began treatment, I copy-pasted a similar graph into powerpoint so that I could track my progress, visually, along the curve, which was gratifying. I inserted a red line, representing me (! :) ) that I moved each month, but maybe that's odd (! :)) The chart i used went out to 40 months, and actually had slightly higher rates of PFS (e.g. 35% made it to 36 months) but I can't find the source at the moment. What's interesting to me is that the earlier graph had a much steeper curve at the beginning, much flatter toward the end, so I said to my docs at the time "Okay, so a lot of women fall off pretty quickly, so if you can make it past 6 months, likelihood of progression any given month/scan is pretty low...?", and they agreed. This new graph has a much more consistent decline, not sure why...Maybe in the beginning docs were much quicker to switch treatments and now they're not, so fewer "fall off"? Also the newer graph includes several hundred women, whereas the one I used included 89 initially, so the new one is probably a bit more reliable...

I felt a bit sad, waking up to read that folks were shocked by this...The info has been available since the beginning and docs should definitely make things clear. This goes back to some of my other posts re: information, while not always cheering, is ultimately good/helpful. Our doctors need to share relevant information, and not "protect" (infantilize) us. Better info means better decisions...

I'd not be discouraged....reality hasn't changed, just our understanding of it...Plenty of women last many years on this treatment and on the next one, too...

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i love all your posts and thank you all so much for being there for support! H-O-P-E is what we have and that is powerful! Just a short note to remind you all of the Israeli cure coming in about 6 months called MU-TA-TO! I first heard about it in December of 2018 and they said in a year so, I just wanted to mention that again as it gives me great hope! Let's all focus on staying alive until the CURE, because IT IS COMING! I remember the lady who spoke at the last MBC conference talking about the NK cells and trials starting, has anybody heard of one? They have made great advancements with the NK cells.

I'm glad you're getting that spot zapped, Barb! Here's to it going away and you continuing on the combo you're comfortable with. Don't forget the 42 day ibrance thing they've only recently discovered, about how it starts working again after a time off. FEAR is a liar! God bless you and heal us all in Jesus name, amen! <3 xo

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My wife was diagnosed terminal in 2016. At the time her breast cancer consultant said with chemotherapy etc she might survive 6 months.We found an oncologist and she was offered an end of life programme.She had her course of Cemo ,the cancer had spread to lungs liver spine pelvis et . We were very fortunate to have discovered Ibrance .We are now approaching three years survival.Yes it has been testing times for my wife ,with a strong mind and faith life goes on .At the moment we at our holiday home in Portugal ,she is enjoying the shade an occasional glass of wine and looking to our next trip in to Italy.Dont believe all you read ,I have been a silent member of this wonderful group.As the husband I have taken comfort from you ladies..It is very difficult being the onlooker,reading some of your positive postings has been a great comfort, for that I must thank you all,Live for the day tomorrow is far away.One final word !dont take notice of negative reports ,there are a lot more success story’s like ours.Keep believing.My best thoughts to you all. J.M

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amen! thank you, very uplifting! I am new here and it's been a lifeline! God bless you!

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Wonderful to hear this!!! I think I speak for all of us when I say, please chime in more, we’d love to hear more about you and your wife!

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What a lovely uplifting post..so happy that your dear wife is enjoying her life and having a lovely holiday...I’ve cheered up lots after reading the posts on here..everyone is so kind

All the best

Barb xx

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Thank you so much for your post. We all need the positive result stories. Enjoy the trip both of you and may both have many more beautiful days💕Bless you for sharing with us.

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We have to keep in perspective That Ibrance has only been on the market since 2015. I can’t remember how long the trials were before dispersing it to the public. Each individual has a different make up so that makes it hard to actually pinpoint how many years or months we will get out of Ibrance. Hoping for a lot of years. Hopefully some new drug will be available.

We need to enjoy each day .

Mimi

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Wise words Mimi

Barb xx

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I try not to read to much stuff because too much of it upsets me. I don't think any of us are a statistic and so what if Ibrance doesn't work. There are a lot of other choices out there. I think my oncologist is on top of what's going on out there and what can be done so i put my trust in him and faith in God that I will live many more years.

Love, Kim

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I do try to avoid reading stuff on google but this caught my eye as I was reading the paper as I always do...should have turned the page quickly!!

Barb xx

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I've just read the article, completely depressing! Not even fit to line the bottom of a bird cage! We deserve better journalism than this!

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Glad you think that...why print stuff like that...so insensitive...a lot of stuff about breast cancer...the pink crap fund raising and articles are all aimed at ladies who are not metastatic which is why people think we can be cured...ugh makes me so cross

Sorry ranting a bit here

Barb xx

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No I completely agree! Having a rant of my own! That's not a journalistic article - it's a space filler! Some one needed a couple of columns to fill a space and has written a really easy article that didn't require any thought! Do they realise the impact of writing such crap has! I don't get cross often but I am now!

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You’ve made me feel better...that article really upset me and I had been getting so much better emotionally ...doesn’t take much to tip the balance

Anyway I’m going to move on and forget it...imagine though if I hadn’t been able to share on here?.. I would have been fretting over this for ages but you ladies have put it in perspective

Thanks

Barb xx

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Barb

I was upset for you. Let it go😘too much crap like that. We all know the reality and we all are fighting a great fight, uniting together as a powerful force to fight and to Live..

I wanted to share something different now. I found out that there is a deferment for anybody being treated for cancer who has student loans. It just happened last month. I was at my dr today and when I told the staff they got angry- common complaint was why isn’t that posted as news? Doc didn’t know and he was tiffed by it also- his response was why weren’t any oncologists told? Where is this being reported? No where. They know I am a strong advocate as a patient and a nurse and want me to spread the news. I spoke to dept of education yesterday about it- it is true- they are sending me the forms but it is so new they don’t have the forms yet.!! I only found out because I was digging into SHARE to help someone I know recently diagnosed. No news or words about this publicly at all.

Keep the faith, Barb, always glad to hear you♥️

Love

Frances

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Thank you Frances for your response

Well done you for finding that out re the student loans...this will be helpful to those worried about that...there is often information to be had but nobody tells people

Barb xx

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Take these articles with a grain of salt - I was diagnosed stage 4 in March 2011 with life expectancy of 9 months or less...after I surpass that I was told 24-36 months.... I am 8 years out stage 4 metastatic with 4 recurrences and still living life to its fullest.

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Wow that's fantastic for you and certainly very motivating to all of us here. Thanks so much for sharing. Take care.

Sandra

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You lift my spirits!!

I spoke to a friend today who has just read a piece in the Daily Mail about a group of ladies with mbc and they’re all 10 yrs on...so it’s possible for some

Barb xx

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Is this the article, Barb?

dailymail.co.uk/news/articl...

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No but this is the article I’ve just emailed you about..how funny

Barb XX

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What a coincidence, Barb! Ten years is good, but it is not good enough. I am hoping that as treatments improve, then 30, 40 or more years will be the norm for metastatic cancer patients, or better yet, a cure.

Sophie

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Not the article in the original post...…but This is a fantastic article Sophie/Barb and should lift the spirits of all of us on this board. This is good journalism and shows hope for the future and now. Thanks so much for sharing.

Sandra

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You're welcome, Sandra. I try to do what I can to help others, so am pleased this gave you a boost! We should all hope for that cure that is just around the corner!

Sophie

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Hi!

Can you send the link?

Sorry this article is scaring you, this is such a crazy time we have not knowing the real truth.

I have to say tho that I’ve been on it for almost 2 years and I’m doing so much better that I barely remember having cancer most days.

Xxoo

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The same here

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