Is anyone on the Lee0011 Double Blind Trial?

For those wanting to share with others living with secondary or metastatic breast cancer.
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Tracey Gibney
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Re: Is anyone on the Lee0011 Double Blind Trial?

Postby Tracey Gibney » Fri Jul 31, 2015 1:59 am

Hi Cosama I picked up my Ibrance today and took the first dose this evening so fingers crossed that I have a good response with few side effects. As far as I know Ibrance was fast tracked in America because of its positive trial results and is available there. I am receiving it on a compassionate access scheme but I have been told that program has now closed to new applicants. Last week on the news I heard that Pfizer were applying to the PBS in September. I have been very lucky that I have progressed very slowly, fatigue is my biggest problem. In saying that I am very active but do need to sleep in and have a fairly slow start to my day. I am no longer working so I am able to do this . I have had my ovaries out as I hated zoladex. I felt very unwell on zoladex, with very high blood pressure, palpitations, nausea and dizziness.
Tracey xx
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

Cosoma
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Re: Is anyone on the Lee0011 Double Blind Trial?

Postby Cosoma » Thu Jul 30, 2015 11:51 am

Tracey,


I knew Phizer had a similar drug, ahead of Novaris in clinical trial, I did not know it was on the market, that is fantastic news for you and many women around the world!

What countries is it approved in and do you know how long before it is available here?

Are you on Zolidex injections also?

Your story Tracey is inspiring, management spanning over 20 years fills be with so much hope :) :) :)

Did the mets change your life in sense of everyday normal activities?

Thanks Tracey xx

Tracey Gibney
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Re: Is anyone on the Lee0011 Double Blind Trial?

Postby Tracey Gibney » Thu Jul 30, 2015 12:29 am

Cosoma,
Well the Ibrance has finally arrived, so I am picking it up tomorrow. Ibrance is a CDK 4/6 inhibitor and is taken with femara. It is made by Pfizer there trial was stopped early because of the good results. Apparently the main side effect is neutropenia but doesn't seem to lead to febrile neutropenia like chemo. With Ibrance the white blood cells drop quite quickly with most women. I have to have bloods taken tomorrow and day 14. It is taken for 21 days with a 7 day break. My oncologist applied to the drug compant for me so I will be receiving it at no cost for as long as it is working. Do they expect your white blood cells to drop? Hopefully you are on the trial drug!
Tracey
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

Angela
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Re: Is anyone on the Lee0011 Double Blind Trial?

Postby Angela » Wed Jul 29, 2015 8:44 pm

Hi Cosoma
I really wanted to reply to your other post but can't find it! :ouch: Anyway I was in your position two and a half years ago but also had a big lung lesion and many little lung lesions. Like you this hit me like a bolt of lightning!! I was unable to talk to anyone. I even asked my lovely work colleagues not to contact me. I thought my life had finished. Give yourself time. Gradually I recovered emotionally and have responded well to treatment. For the last couple of years I have learnt to regard my secondary cancer as any other chronic illness. You deal with it like you would diabetes or arthritis or renal disease! :crybaby: There is so much advancement being made in treatment. :clap:
My first thought after diagnosis was "Oh no I'm not going to see my grandson start school!" Well he's in kindy now. I saw him start school and have another gorgeous granddaughter as well. I returned to work after the initial shock and have managed 3 days a week with no problems.
As far as the stress re scans go- sorry can't help you. I stress every time. Maybe someone else can advise both of us how to keep calm. :pmsl:
Anyway I hope I have lightened your day a bit. xxxxxxxxxxxx
Dx April 2001 Grade 2 DCI. L lumpectomy. All 33 nodes removed clear
6/52 radiotherapy June 2001.Tamoxifen for 6 years.
Yearly mammograms always clear.
Dx January 2013 extensive bone mets, lung mets and metastatic pleural infusion.
On Arimidex and Xgeva.

Cosoma
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Re: Is anyone on the Lee0011 Double Blind Trial?

Postby Cosoma » Wed Jul 29, 2015 4:25 pm

Tracey,

I am on a Lee0011/Placebo double blind trial, its nerve racking as I do not know if I am on the drug or not, no side affects so far, my oncologist will know within 8 weeks if I am on, fingers crossed!

Speaking to the Trials Unit nurses, nobody on the trial really has any side affects, I have not spoken with anyone personally, hence posting.

Can you tell me about the drug you are about to start, how were you able to access it and what is the cost?

Look forward to hearing from you Tracey :)

Cosoma xx

Tracey Gibney
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Re: Is anyone on the Lee0011 Double Blind Trial?

Postby Tracey Gibney » Tue Jul 28, 2015 9:40 pm

Cosoma I am not on the trial but I am waiting for Ibrance to arrive which is a very similar drug. I am getting the Ibrance on a special access program. How long have you been on the trial and what side effects if any have you experienced.
Tracey xx
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

Cosoma
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Is anyone on the Lee0011 Double Blind Trial?

Postby Cosoma » Tue Jul 28, 2015 3:45 pm

After giving birth to my second daughter at 31, I was diagnosed with 9 grade 3 cancer tumours in my left breast, along with 4 out of 12 positive nodes, followed by a double mastectomy, chemo, radiation and a combination of zolidex and fermara for 6 years.

I was diagnosed with secondary breast cancer in my pelvis and lower spine 8 weeks ago, I am continuing with Zolidex, tamaxifin and taking part in the double blind trial of Lee001.

Is anyone else on the the Lee011 Trial? If so I would love to hear from you!

Thanks so much :)


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