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new member / SORCE

pj_gal
Posts: 6
Joined: Feb 2012

Hi. I'd a 4.5cm tumour, incidentally discovered, removed thru robotic lap radical nephrectomy six weeks ago. Recovering very well. Path rpt: clear cell rcc; margins clear; cancer limited to kidney (pT1b); Furhman grade 3.

I'm eligible to participate in a trial known as SORCE but am indecisive. I would be most grateful to hear from anyone who are or have been in this trial and how are they coping.

Thank you and have a good day.

pj_gal
Posts: 6
Joined: Feb 2012

sorry, surgery was 11 weeks ago

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

pj_gal, may I ask where you are? I believe SORCE is the name of a trial going on in the UK for non-metastatic patients, comparing sorafenib (Nexavar) with placebo.

pj_gal
Posts: 6
Joined: Feb 2012

Texas_wedge, I am in Australia and you are spot-on about the trial.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Sorry you have occasion to be here, pj_gal, but you'll make a lot of friends here where the only relevant human parameter is compassion. I'm an Englishman living happily (aside from the obvious) in Scotland and we have other members from e.g. Russia and Malaysia, all of us made very welcome by our friends Statesside.

I have a pretty dreadful prognosis and have an eye on the SORCE trial which I could qualify for if I get an unexpectedly favourable first follow-up scan on 29th inst. I'm more likely, alas, to qualify (if at all) for the ASPEN trial for met. patients, evaluating Nexavar against Afinitor. I'm at almost 11 weeks post-op so at much the same stage* as you so maybe we'll exchange more messages in due course on these brilliant support threads. * (not cancer stage, where I hope you're not stage 4 like me)

Best of luck,

TW

pj_gal
Posts: 6
Joined: Feb 2012

Thanks TW. I did notice this forum provide good support, information and frank opinions by its members. Good luck to you on your follow-up scan on 29th and hope to hear some good news then.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

Ah! TW, I’m now living in TW(Taiwan). So you can add it to your location list:-)

Jon

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

I just came back from my follow up appointment with my Urologic Oncologist (who I love!) and had similar results in pathology report. My surgery was almost 5 weeks ago and the tumor was 3cm Stage 1 Grade 3 clear cell with good margins. I too am healing well and with this information it is looking like an exceedingly high cure rate (high 90's and he says he thinks realistically almost 100%) with, statistically, only a 5% chance of a new tumor forming in either the remaining portion of the saved kidney or the other one, and a 95% chance that I will never have to deal with this again. So with all that good news - why would you consider entering a trial? If you are otherwise healthy, the cancer is out and there is such a low risk of experiencing this again - why put these drugs in your body? Of course, I had a partial nephrectomy that saved part of the affected kidney so I still have 2 to work with and it sounds like you opted for the radical removal of the entire kidney so that may be a factor distinguishing our situations. But I have seen a lot of discussion about these trials on these boards lately and it disturbs me a bit. Personally - I would only enter a trial if it was my last option and I thought death was a real imminent threat and I was hoping for a miracle. The very nature of a trial is that they don't know what the outcome of taking these drugs will be - after already surviving this cancer - I wouldn't take a chance like that! I say if the cancer is out with good margins and you have a low risk of dealing with this again - it is not worth it. Just my opinion!

pj_gal
Posts: 6
Joined: Feb 2012

hi lawmanmike. thanks for sharing. you do have a very pertinent point here. Don't want to sound like a coward but quite frankly, I prefer not to subject my body to more drugs than absolutely necessary.

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