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Pazopanib trial for recurrence prevention

KGField's picture
KGField
Posts: 5
Joined: Feb 2012

I am new to this site. I have just enrolled in the phase 3 pazopanib trial for recurrence prevention. I had a radical nephrectomy in Dec 2011 (stage 3). I would be interested in sharing experiences with any other trial participants.

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

KG - if you don't get enough takers (but I expect you will) you could throw your nets wider - e.g. there are at least a couple of pazopanib (Votrient) trials on in the UK. They stipulate entirely, or at least partly, clear cell RCC.

KGField's picture
KGField
Posts: 5
Joined: Feb 2012

Thanks, I may.

etrainor's picture
etrainor
Posts: 8
Joined: Dec 2011

Hello KGField,
I too, am in the same trial. Mine is through Stanford U. I just started taking pazopanib/placebo on Monday (7days). So far, I have had mild symptoms that make me wonder if I'm on the placebo or drug. I have quite a bit of fatigue. I take the medication at night and have woken up a few nights with a mild stomach ache. It's difficult to tell if these are real symptoms or in my head. My doctor has said some people have symptoms right away and some after about 2 weeks
I am a 57 year women, who thought I was in pretty good shape. I was diagnosed on Nov. 4 with a kidney tumor size 6.5cm. I had my nephrectomy on Nov 21. I had been feeling poorly and had some flank pain and high blood sediment rates. After 2 months of doctors trying to figure out what was wrong, they performed a CT scan and there it was. My pathology report was Stage 3, Grade 4. Even though I had clear margins, some cells were found in the perirenal fat which put my results at Stage 3.
I would love to hear your story and how the trial is going for you.
~Hope this site has provide some information and some understanding.
Colleen

KGField's picture
KGField
Posts: 5
Joined: Feb 2012

Hi Colleen,

Thanks so much for posting. It seems you and I are on very similar paths. I am enrolled through Johns Hopkins in Baltimore and took my first dose this past Thursday and I too have been trying to read the tea leaves to see if I have active drug or placebo. My blood pressure spiked over the weekend, enough so that I will up my BP medicine beginning tonight. [I always had low BP until the nephrectomy and got my primary care doc to put me on medicine to get under the 140/90 cutoff to be able to enroll in the trial.] So, I’m beginning to think I have the active drug. I’ve had no other side-effects yet that I can call real, perhaps some stomach upset, but if so it’s mild.

I am 52, otherwise very healthy, and the tumor was discovered in Oct. I fell 8 feet out of a treehouse I’m building for our kids, got briefly knocked out and broke 6 ribs on one side. I was given a helicopter ride to a shock trauma unit in Baltimore where they did a CT to look for other internal damage (there was none) and found the 6 cm tumor. I had a radical nephrectomy on 01Dec via laparoscopy using robotics.

This whole thing has been a weird out-of-body experience. I’m looking forward to hearing how you fare with the trial.

Keith

etrainor's picture
etrainor
Posts: 8
Joined: Dec 2011

Hello Keith,
Wow, we do seem like we have been on a similar journey. When you mention you felt like it has been an "out of body experience" for you, it hit a chord with me. That explains the entire event for me. I will catch myself often thinking, did this really happen to me?
You must have been so surprised when they gave you the news and you were in the hospital for something completely different. I'm so sorry that you got a double whammy there.
I will not go to Stanford for 2 weeks now. So far, no symptoms and I have very low blood pressure. I never thought I would be wishing I felt bad, it's sort of a strange feeling. However, if I was having side effects I would probably become fearful. So, like everything else on this journey I need to relax and try to get on with the blessed life I have been given. ~Would love to continue to hear how you are doing. Take care.
Colleen

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

I am in the trial as well. Last week I went in for my 3-week check-up and my liver enzymes were up. I am pretty tired, but not sure if it's mental exhaustion or what! I keep waiting for the bp to rise, but it hasn't and I've always had extremely low bp to begin with.

No other side effects, but it certainly messes with my head, not knowing if you have the real stuff or not!

My surgery was 3/28/12, right kidney removed. Stage 3, grade 4. I am 49 year old female.

Please let me know how the trial is going for you!

Lorraine

ten62z's picture
ten62z
Posts: 7
Joined: Sep 2012

I just began the trial last week. I had a partial nephrectomy of the rt kidney June, 2012 at MSKCC in NYC. Stage 3 Grade 3. The only thing I've noticed since taking the pills is a swollen feeling and slight numbness in my mouth. I have also noticed a lethargic feeling in the middle of the day. My BP has remained the same and I have no other side effects associated with pazo. I am a 54 year old male living in NC.

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

For those of you who are taking Pazopanib/Votrient as part of a trial, what diffrentiates trial status from presciption status? I am taking Pazopanib now, but it is not a trial. I am working up to 3 tablets a day-- took 1 tab for two days, have taken 2 tabs for almost a week, and will start taking 3 tomorrow to see how it works out.

I am beginning to experience a little more stiffness in my lower back (it was already there due to a fibroid issue but is even MORE stiff now), some pain/stiffness in the upper back and shoulders, and some fleeting stomach pain at night. So far, none of it is unbearable enough to take medication for it. The only pain that is lasting is the lower back pain. Everything else is different each day and short-lived.

After I typed all this, I just re-read the original post and answered my own stupid question. You all are taking Pazopanib as a trial to prevent recurrence. I am taking it for its approved purpose- metasticism that is already present. Nevermind!

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