Need Advice - RCC Stage 3 - Adjuvant therapy - Clinical Trial - Pazopanib v/s Active Monitoring - An

livealive said:

12 week cut-off
The rationale was not explained, it's the "Terms of the protocol", and I have seen a view of these "agreements". Any "adjuvant" therapy has to be started within a certain time. The reason may be the theoretical speculation as explained in that book I read, but that is speculation. Regardless, that is the reality of adjuvant therpies.
Not yet signed up, sitting on it.

Pazopanib trials
A minor technical hitch prevented my communicating the info. below to Raj by CSN email and it since occurred to me that the content might interest others here too, as well as, I hope, Raj.

Someone on the KIDNEY-ONC forum was contemplating the Votrient (pazopanib) trial and wrote this on 23 Dec 2011:

"Hi all,
> I'd like to hear about side effects of pazopanib. Not just the long list
> that comes with the drug, but what someone on the list has actually
> experienced. The oncologist tells you all the bad stuff and it's pretty
> scary. I have the opportunity to get into a study for Stage III RCC. I've
> had my right radical nephrectomy and have no known cancer today (as of
> 10/20/11). The study is to see if pazopanib prevents recurrence.
>
> It's hard to weigh the risks of recurrence (35-50% according to the
> oncologist) against the chances of severe side effects (like death!). On
> top of that the whole point of the study is that nothing has yet been found
> to prevent recurrence and they're trying this drug now.
> Thanks for the list, it's a real help."

He received the following helpful answer:

"Do not hesitate at all. I have been on Pazopanib for the last 4+ months.
Apart from Diarrhea I have no other issues whatsoever. I had a nightmare of
a time on Axitinib. Compared to the adverse effects of the other TKIs,
Pazopanib is a walk in the park.

So chin up man, fear not, take the pazopanib and get well soon."

angec said:

Who is Dr. Dutcher?
Hi there, i have been reading older posts here. My mom 9 had her right kidney removed almost two weeks ago. She had almost 7cm mass (which showed 4.3 on scan). Stage 3, one node and renal vein margin. Is Dr. Dutcher in Sloan Kettering in NYC? I am supposed to make an appt. to take her there any time now. Just waiting for her to heal a bit to make the trip, it is a bit of a drive by car and she still has some pain. Thanks for any info you can give on him? In the meantime you can check out this doctor who uses homeopathy in advanced form. My mom has been on it since we found out about her tumor in February. He says he has rcc survivors of all stages and no side affects. He also says he can prevent the spread to other areas. You can write to him and ask questions yourself. I would be interested in the answers he would give you. I have been pretty happy with him for 6 years now and he has helped us alot in many way, including my dads prostrate cancer which he cured. Here is his site. www.drpbanerji.com.. If you write to him tell him you met me on the kidney boards.. Angela. He does this work through telemedicine..you dont' even leave your house. He is a great doctor. I wish the best for you and my mom and all the friends i have met on here. Did you do the trial?

Dr. Janice Dutcher
Angela, Dr. Dutcher is very highly spoken of everywhere. Apart from here, if you read the appraisals of her on KIDNEY-ONC you'll see what I mean. There is a useful lengthy video of her in action in her office to be seen here:

http://www.columbusandthevalley.com/voiceofthevalley/?p=1039

I suggest you also ask Raj ("livealive" here - the posting above yours, since he has recently consulted her. Jerry White also knows her well and, I believe, has a high regard for her. If you get a chance to view the video, I'd like to hear whether you agree she would be good for your Mom.

Texas_wedge said:

Dr. Janice Dutcher
Angela, Dr. Dutcher is very highly spoken of everywhere. Apart from here, if you read the appraisals of her on KIDNEY-ONC you'll see what I mean. There is a useful lengthy video of her in action in her office to be seen here:

http://www.columbusandthevalley.com/voiceofthevalley/?p=1039

I suggest you also ask Raj ("livealive" here - the posting above yours, since he has recently consulted her. Jerry White also knows her well and, I believe, has a high regard for her. If you get a chance to view the video, I'd like to hear whether you agree she would be good for your Mom.

Personality Wise i say yes..
She seems like she is very knowledgeable and i like her bedside manner. I am just thinking all of this stuff will be too harsh for mom. I think she is in Roosevelt Hospital? We were thinking Sloan Kettering. Very informative.. thanks for the link

Texas_wedge said:

Jan Dutcher
At least it gives you another option of known quality who puts the patient before everything else. Good luck, however you choose to go. The MAARS CD will be very calming. Keep us posted. (By the way, I won't get much feedback on my situation until a clinic in about 5/6 weeks time but I'm told the op went smoothly this time. Thanks for asking.)

Yes, it is good to see what
Yes, it is good to see what is available. Mom said she did not want to listen to anything. She is prepared to just pull the covers over her face and even the slightest thing wrong like a sneeze gets her nervous. She is so nervous i feel bad for her and know how hard it must be. She had breast cancer aout 18 years ago and was nervous with that. I totally understand. However, i am going to get the books and cd for myself and i can relate what i hear and read in my own way. 5/6 weeks is a long time to wait TW.. but I am hoping it is all good! Did you check out that website? I was wanting to hear your thoughts on it. You are so intelligent. www.drpbanerji.com.... Have a good day!! Keep smiling, the body will feel better!

Texas_wedge said:

email
Angela, in order that people don't have to reveal their email addresses here, ACS makes a special facility available, which you can access by clicking on "CSN email" which you'll find in the brown box on the left of the window, under the heading CSN. Do try that. By the way, I've looked at the homeopathy site you mentioned quite thoroughly in the past and have it bookmarked. I look forward to hearing from you.

Ok. I see the email sight
Ok. I see the email sight but don't know how to send mail to you... But if you have seen the site then that is good. I was going to forward the email where he says that most of his patients live many years longer and have a better life with less pain and suffering just taking his meds. I felt much better to hear that. I am hoping he can help someone else because this disease is fierce. Texas maybe you should write to him as well. It wouldn't hurt to see what he can offer you. He is very, very low cost as well so no problems there. A few hundred dollars i pay every six months and i have him at my fingertips whenever i have a new issue come or and i usually get a response within 24 hours or more immediate if it is an emergency. Just want to let you know and keep the hope alive. Thanks for all of your help. Let's see if i figure out this email thingy now.. lol By the way, i hope your mother in law is doing well.

cww71964 said:

advice
Hi Friday,

Well first off, let me say I am sorry you are joining the club. Our stories are very similar. I am 47, non-smoker, very active and in shape. I have never had anything wrong other than normal colds, alergies, etc. In early December I suddenly had blood in my urine followed by flank pain. A trip to the ER and a few ct scans later I get the sobering news that I have a mass in my kidney. Two days later the urologist is telling me that it is small (4cm), caught it early, and surgery will take care of it. I did all the scans and tests before surgery and all pointed to stage 1. I had the surgery 1/ 17 and it went well, got it all. All was good. About a week later I had my follow up appointment. The path report came back as 4 cm, grade 2, clear margins, encapsulated but with some renal vein invasion, so stage 3. The urologist said that even though I went from stage 1 to 3 that the followup would be the same, chest x ray every 3 months, ct scan every 6. I didn't like that answer so I asked my family doctor for advice. After some research, she told me the same. I researched on my own and found a trial in my area for a drug, Everolimus, in a phase 3 trial for preventing spread in stage 3 patients like myself. I made an appointment with the oncologist conducting the trial. He had me do all the testing, blood work, ct scans of chest, pelvis and abdomen. The blood and chest were fine, will get the results of the others next week. If all is good, I can begin the trial. It is a blind trial as well, but the way I see it is that whether or not I get the drug, I have established a relationship with an oncologist, and I am going to be closely monitored. If it does come back, it will be caught early. In Gerald White's book he says that " if you don't take charge of your own healthcare somebody else will and you won't like the results". I am doing everything in my power to increase my chances of staying cancer free. Exercise, dietary changes and most of all, a positive attitude.

Best wishes ,

Wayne

everolimus

Hi Wayne,

I'm Stacy and have similiar situation. Im 39 healthy no risk factors and ended up in ER dx with CCRCC stage 3 grade 4. Radical Nephrectomy 1/15/14 tumor size 8.5 cm. My oncologist wants me to ge into Everolimus study for adjuvant therapy. The center is 3 hours away and I was wondering what your experience with the drug was if you did not reveive the placebo. ANy advice would be greatly appreciated. Thanks! stacy

todd121 said:

Pazopanib Adjuvant Trial

I'm moving this thread back up to the top. I'm not clear what was decided and who has done this trail?

2 years ago I did the Everest trial (1 year on everolimus/placebo). I finished a year ago. Just had a recurrence in my adrenal gland and had that removed weeks ago. Now my oncologist wants to offer me this drug trial. It's a year on pazopanib/placebo.

I'd think 3 years out, they'd have some results by now. I'm surprised this trial isn't over yet.

Does anybody know the results of this trial? This may be a new trial for people like me that have had a surgically resected recurrence (as opposed to 1 initial kidney tumor treated by nephrectomy).

Can anyone tell me if they know if this drug has helped delay/avoid recurrence when you have NED?

Anybody done this trial?

I'm having exactly the same difficulty deciding as the discussion here and also that I had when I decided to do the Everest trial.

My uncle (a retired oncologist) isn't pushing me one way or the other, but is saying that it's hard to know if a drug will prevent recurrence altogether in an adjuvant study and if that's not a better use of the drug than waiting for it to come back and using it later to prolong survival. He basically said we don't know, and that's the reason for the trial.

However, I'd think since it's been 3 years since they started a trial like this, they'd have results already by now.

Comments?

Todd

There was a good discussion/presentation about this at the Cedars Sinai Kidney Cancer Patient Survivor conference. You should see if he KCA website has the link. I believe they said that data is coming from 2 large adjuvant studies soon?? 

I don't have my notes but I bet you can get a copy of the presentation if you emailed somebody associated with the Kidney Cancer Association or Dr. Figlin himself. Check out the agenda online and maybe you can email the presenter directly. 

 

Hope that helps. 

todd121 said:

Pazopanib Adjuvant Trial

I'm moving this thread back up to the top. I'm not clear what was decided and who has done this trail?

2 years ago I did the Everest trial (1 year on everolimus/placebo). I finished a year ago. Just had a recurrence in my adrenal gland and had that removed weeks ago. Now my oncologist wants to offer me this drug trial. It's a year on pazopanib/placebo.

I'd think 3 years out, they'd have some results by now. I'm surprised this trial isn't over yet.

Does anybody know the results of this trial? This may be a new trial for people like me that have had a surgically resected recurrence (as opposed to 1 initial kidney tumor treated by nephrectomy).

Can anyone tell me if they know if this drug has helped delay/avoid recurrence when you have NED?

Anybody done this trial?

I'm having exactly the same difficulty deciding as the discussion here and also that I had when I decided to do the Everest trial.

My uncle (a retired oncologist) isn't pushing me one way or the other, but is saying that it's hard to know if a drug will prevent recurrence altogether in an adjuvant study and if that's not a better use of the drug than waiting for it to come back and using it later to prolong survival. He basically said we don't know, and that's the reason for the trial.

However, I'd think since it's been 3 years since they started a trial like this, they'd have results already by now.

Comments?

Todd

Dr. Scher

Dr. Kevin Scher gave the talk. It's the results of the ASSURE trial that are supposed to be ready mid 2015. This is the largest adjuvant study. If you email him ask for his power point. It had good info. 

sblairc said:

Dr. Scher

Dr. Kevin Scher gave the talk. It's the results of the ASSURE trial that are supposed to be ready mid 2015. This is the largest adjuvant study. If you email him ask for his power point. It had good info. 

Thanks!

I wasn't able to attend that conference, but had planned to. Dr. Figlin's nurse emailed me and said that there would be a video of the talks on the KCA website soon after the conference, but I haven't been able to find a link to any of them. I may not know where to look.

Todd

LynninNC said:

I did the votrient trial

Hi Todd. I participated in the pazopanib/votrient blind placebo trial. I was at Duke and took the trial drug (or not) for a year 12/12 to 12/13. I had an open nephrectomy 10/12, 9 cm 3Tb. I am pretty certain that I got the active drug.....I had enough of the side effects....but I tolerated it well enough. So far my 6 month follow up scans have been NED. I know that Duke is no longer enrolling new trial participants. In December I asked how people are doing and the general sense I got was that only 1 had actually had a distant met while on the meds.  I was crushed to see you that you had a recurrence....if I remember correctly  you had surgery about the same time as me. I am still hyper-vigilant about aches and pains and am glad that you acted on your pain. Periodically I have pretty significant adhesion pains. It is like my guts are twisting up inside me. But once I can make myself relax they ease up. Back to the trial: I feel good about taking part in it. It did get me into a fabulous medical facility and gave me some sense of doing everything I could. I struggled with the loss of control when this all happended out of the blue. Signing up for the trial gave me that sense of control.  When I enrolled it was restricted to patients that had NOT had a met and were less than 3 months post surgery. Maybe the goal of the study is changing. Good luck with your decision.  Positve vibes.   L~

Drug Trial Pazopanib

I'm not sure if there is more than 1 study or if this is the same study. The one I'm looking at is for anyone who has had RCC but has had all disease resected. You have to enter within 3 months of having surgery (which sounds the same as your study).

I found out today that I had the placebo on the EVEREST trial. It completely shocked me. I'd been so sure that all the times I hadn't felt well that year was due to the drug, and I was never on a drug. It's making it harder to decide whether to do another one or not.

This may very well be a different study. The title mentions pazopanib versus placebo following metastatectomy. The other one was probably following nephrectomy. That one is probably closed.

I wonder why they would think the result would be different....

I'll probably do it.

I'd like to just ignore all of this and live my life as if it never happened. I don't think that's an option for me.

Todd