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RCC patient taking new clinical trial AS1411

Posts: 6
Joined: Nov 2007

We found out last oct, 07, the my RCC had returned and had met to my liver. In Nov, 07 I began taking Torisel, it worked well until may 08, then the RCC met to my left hip bone,(I had been having pain there for a year, was told it was arthritis, but it turned out to be a tumor that started growing, (the torsil was still working on the liver tumors.) In June, 08 i had a bone replacement, that tumor removed, for the tumor on the sancrum, i was given radiation, and then i went on sudent, (TERRIBLE STUFF...BUT....MY TUMORS in my liver began to shrink, the largest being 11cm shrunk to 8 cm.) Because i had such a terrible time tolerating the sudent, my doctor has started me on a new clinical trial i've been waiting to begin for a year now.

If you want to look up the information it's ***~ AS1411 ~*** !!!

I'm actually in the hospital in Louisville, KY right now with this treatment flowing in my veins. NOOOOOOOOOOOOOOO side effects EXCEPT gained a pound in a day, because of the food, the food is good and all you can eat pretty much. After they put the pickline in, no pokes, no more needles, they drawl all blood from the line, the chemo is fed thru the line, I just sit here, talking to my roommate, she's having the same treatment done, she also did the IL2 high dose, and playing games on the laptop and watching tv.

No sickness, no tiredness (except that they wont let you sleep a solid 8 hours without taking vitals - which i can deal with), no diareha, no mouthsores, feet or hand problems thus far. People I've talked to that's already finished the first hospital round say there is still no effects, they feel great.

The trial is being conducted at JAMES GRAHAM BROWN CANCER CENTER in Louisville, KY. under Dr. Labor.

I love this Doctor, he's so kind and caring.
To all battling RCC and the family and friends supporting them...
Best of Luck and God Bless

Posts: 6
Joined: Nov 2007

I'm back in the hospital for the final round of the AS1411 treatment. I'm praying to God and asking for all the prayers I can recieve that this treatment is working.

The past few weeks, since my first round of treatment, I felt good, enjoyed my Thanksgiving with my family, had an appatite and could actually taste the food. I have had energy and actually felt like doing stuff. Mainly playing with my 15 month old, he's growing so quickly. I even had the energy to Finally get my livingroom painted.

The side effects are so non-exsistant that it's scary. I have felt tired the past couple days, and slept quite a bit, but that could just be from the bordem, or from being away from my baby, i'm catching up on lost sleep. I do however have to get up to go to the bathroom often. A lot of fluid going in and coming out.

I honestly believe wholeheartedly in the possibilities of this drug for so many cancer patients being cured. We are only on the first steps, but God has given these doctors the knowledge of combinding the right things to cure cancer. It's only a matter of days before these breakthroughs are proven.

ANYONE that is taking Sutent right now, PLEASE Read up on this treatment option. I know how terrible the side effects are of the Sutent, and I also know it does work, my tumors had shrunk 20% on the Sutent, but I couldn't hardly stand the last 2 weeks of the treatment each month. I was missing out on life trying to save my life.

In 4 weeks I will have my scans and know more. I will post that information for everyone to see. God willing ... it will be Wonderful information, and hope for all that they can have treatment and go back to a normal life with nomore need for chemo.

Sorry for rambling, It's 5 am and I have a lot of time on my hands here.

Best of luck to all,
you are all in my prayers
I pray the cure is found before another is lost.

Take care

Here is a couple sites you can read up on, or just google AS1411 and find a lot of info there.

I went to this site,
and clicked on the
Renal cancer poster presentation
And found information about the drug and the data from the original 12 patients that took the treatment in Phase I with RCC.

Posts: 11
Joined: May 2008

Just curious, because one day I may be looking to pull
the trigger on the next bullet (treatment) to come along
with some promise.

Posts: 6
Joined: Nov 2007

I'm sorry I haven't been back on sooner, my son keeps me so busy. I got my results that the tumor had actually began to grow again in the last cat scan. Since then I had a full bone scan and mri on my shoulder where I had been having a constant aching, which proved to be a new tumor beginning to grow in my shoulder joint. We caught it early (tumor was less then a cm) so I just did 14 days of radiation on my shoulder.

During both stays in the hospital while I was taking the AS1411, I had a roommate (Florence), she is older then I, but had the same, RCC met to the liver. Her result was growth of the tumor as well.

Florence chose to do nothing and in her last pet scan it showed that her tumor had now stablized. They had told me that it was possible that it could take a couple months to stable, but I wasn't willing to take the chance.

I chose to go back on sutan, lowering the dose from 50mg to 37.5 mg. I am in the 3rd week of my 2nd round, I have one more week, then I will get my next ct scan, PRAYING for stable or better. Unfortunitaly, I wont know if it was the AS1411 or Sutant, that contributes to my next results.

Florence will be scanned again at the end of April, as long as her tumors stay stable, she won't have to do anything else, no more chemo's or radiations, the beauty of the AS1411 drug. I will try to keep both of our results updated as time goes on.

with Terrible Side EFFECT,
discuss lowering your dosage.

Since i've been on this lower dose, i'm still tired, but the side effects have been NOTHING compared to what they was with the 50mg. It comes in 3 bottles - 12.5 mg each, and I take 3 pills a night.

I still recommend the torsel first.

Best of luck to you.
Keep me informed if you find somthing worthy of looking into. I would GREATLY appreciated it. I know the cure is out there and I will find it for the sake of my son and all the sons, daughters, and all our loved ones.

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