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-   -   Anyone else on the trial S-222611? (https://her2support.org/vbulletin/showthread.php?t=64332)

Lesleycstephen 12-28-2015 11:18 AM

Anyone else on the trial S-222611?
I live in Scotland in the UK, and about 6 weeks ago started on the Phase2 trial for a Japanese drug, a tyrone kinase inhibitor, made by Shiniogi.

I had extensive mets in my lungs, trouble breathing and coughing a lot. Within 3 or 4 days I noticed I was coughing less - 6 weeks on I feel great. No cough, breathing well, bags more energy. I get a scan soon so will know exactly what the response has been.

I believe it has also shown efficacy on brain mets, and another lady in our small group on the trial here has had significant reduction in her brain mets.

I genuinely feel this is a wonder drug (I had previously not responded to Xeloda/Capcetibine OR to TDM-1/Kadcyla, so was fast running out of options). From what I can gather, it has had a really good success rate. Out of us 10 patients, 9 responded.

And even better, there are very few and fairly minor side effects. I have had almost none. Anyone on the trial elsewhere, or know anything about it?


Juls 12-28-2015 11:42 AM

Re: Anyone else on the trial S-222611?
Just read about this trial. I am in Scotland on other trial (Pertuzumab) Great to hear & read of good results.

MaineRottweilers 12-28-2015 01:09 PM

Re: Anyone else on the trial S-222611?
Lesley, that is FANTASTIC news. Thank you for being willing to put yourself on the line for the trial, paving the way for others. Thank you, thank you, thank you and I hope it buys you tons of time.

waterdreamer 02-11-2016 06:22 PM

Re: Anyone else on the trial S-222611?
I contacted the lead researcher in this trial, and for now they have no plans for a phase II of this trial. I also contacted the Japanese company headquartered in New Jersey, and expressed interest in participating in a Phase II of this trial, should it get that far.

Lesleycstephen 02-12-2016 03:19 AM

Re: Anyone else on the trial S-222611?
Hi there

I asked when I was last in hospital what will happen with this drug, as its been very successful in our small cohort of women - 10 out of 11 responded, at least one complete remission and everyone else good partial responses. Its a phase1/2 I think. Was told they will collect all the data this year and decide whether to take forward - I am praying that they do asap as it is fantastic, and almost no side effects as so targeted.

I had previously filed on Xeloda, kadcyla and Herceptin hadn't really worked either, so things weren't looking good.

If I hear any more will let you know

Best wishes and hope things stay stable . Let me know if you get on MM302 and how that is, as Im always looking for the next drug.


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