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

GailN

todd121 said:

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

Sunitinib Adjuvant
Todd, I suppose the metastatectomy trial is for RCC that has definitely escaped the kidney via the blood/lymph system whereas the adjuvant trial was for RCC that probably hadn't left the building!! There is likely a greater risk of recurrence for tumour that has already metastasized and therefore a chance that the trial may be able to detect a difference......liken it to finding a needle in a hay stack assuming of course that the needle does exist in the first place.

I took Sunitinib as an adjuvnt for 12 months after a nephrectomy in Feb 2012 for a 5.8cm stage 3a, grade 4, ccRCC. Currently, it has been 3 years and still NED. That does not say that this NED status is due to the sunitinib as it may never had recurred anyway. But I had an aggressive tumour with other risk factors such as necrosis and was keen to take any measure that may prevent recurrence. Other adjuvant trial results seem to be leaning towards benefit for high risk groups of which unfortunately I am a member. If I was only stage 1, grade 1 with a 3cm tumour, I would not bother with adjuvant therapy as the benefits do not outweigh any potential harm from the TKI. Further, I take supplements of maitake mushrooms, liposomal curcumin, drink cups of green tea and use fresh culinary herbs/spices in my cooking. Not sure if any of this helps but my cooking tastes a lot better!!.......regards

MMondi1

todd121 said:

Drug?

Which drug study did you participate in? How did you do on it? Any idea if you got the drug or a placebo?

Thanks,

Todd

Todd,
 
I did the

Todd,

 

I did the votrient/placebo trial. I def got the drug as I had several side effects (hair turned white, thyroid, liver enzymes, blood pressure, ect.).  Overall I did ok.  I am currently a  little over a year out from the trial.  I def understand both sides for and against.  

todd121

GailN said:

Sunitinib Adjuvant
Todd, I suppose the metastatectomy trial is for RCC that has definitely escaped the kidney via the blood/lymph system whereas the adjuvant trial was for RCC that probably hadn't left the building!! There is likely a greater risk of recurrence for tumour that has already metastasized and therefore a chance that the trial may be able to detect a difference......liken it to finding a needle in a hay stack assuming of course that the needle does exist in the first place.

I took Sunitinib as an adjuvnt for 12 months after a nephrectomy in Feb 2012 for a 5.8cm stage 3a, grade 4, ccRCC. Currently, it has been 3 years and still NED. That does not say that this NED status is due to the sunitinib as it may never had recurred anyway. But I had an aggressive tumour with other risk factors such as necrosis and was keen to take any measure that may prevent recurrence. Other adjuvant trial results seem to be leaning towards benefit for high risk groups of which unfortunately I am a member. If I was only stage 1, grade 1 with a 3cm tumour, I would not bother with adjuvant therapy as the benefits do not outweigh any potential harm from the TKI. Further, I take supplements of maitake mushrooms, liposomal curcumin, drink cups of green tea and use fresh culinary herbs/spices in my cooking. Not sure if any of this helps but my cooking tastes a lot better!!.......regards

Trial

That's exactly the difference.

I suppose you don't know if you had the real drug or a placebo if it was a trial?

I was also Stage 3 and Grade 3. My tumor was 6.8cm. Had a similar concern.

If you think those things help, I might just try them. Fresh herbs and spices are great regardless!

The only supplements I take are D3 (I was deficient before the nephrectomy but got worse after, and now it's normal taking 4000 iu per day), B12 and a multi-vitamin and a B complex + C. I also tested low on B12.

Do you take a supplement  made of the mushrooms? What's the difference between liposomal curcumin and just turmeric? Are they the same? Can you get that from just using curry powder in your food?

Todd

 

MMondi1

todd121 said:

Trial

That's exactly the difference.

I suppose you don't know if you had the real drug or a placebo if it was a trial?

I was also Stage 3 and Grade 3. My tumor was 6.8cm. Had a similar concern.

If you think those things help, I might just try them. Fresh herbs and spices are great regardless!

The only supplements I take are D3 (I was deficient before the nephrectomy but got worse after, and now it's normal taking 4000 iu per day), B12 and a multi-vitamin and a B complex + C. I also tested low on B12.

Do you take a supplement  made of the mushrooms? What's the difference between liposomal curcumin and just turmeric? Are they the same? Can you get that from just using curry powder in your food?

Todd

 

Todd I came across this today

http://www.sciencedaily.com/releases/2015/02/150224091713.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Ftop_news%2Ftop_health+%28ScienceDaily%3A+Top+Health+News%29

 

Footstomper

MMondi1 said:

Todd I came across this today

http://www.sciencedaily.com/releases/2015/02/150224091713.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Ftop_news%2Ftop_health+%28ScienceDaily%3A+Top+Health+News%29

 

Science Daily

Well THAT's a depressing survey!

MMondi1

Footstomper said:

Science Daily

Well THAT's a depressing survey!

Yes its disappointing but

Yes its disappointing but hopefully the trial will still show to have some benefit to a subset of patients. It seems a lot of doctors have been hinting at this.  It also does point out, the trial didnt worsen the outcome.

Ree_Maryland

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.

email

Hi i alos had stage 1b RCC kidney removed. I am iinterested in the Homeyphatic infor ,where do I find that infor? thanks

todd121

MMondi1 said:

Todd I came across this today

http://www.sciencedaily.com/releases/2015/02/150224091713.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Ftop_news%2Ftop_health+%28ScienceDaily%3A+Top+Health+News%29

 

Thank you Thank you!

My gut feeling was that VEGF drugs weren't going to make a difference in adjuvant settings. This makes me doubt I'll do the study. Actually, I'm not going to do the study. I've changed my mind after seeing this. I don't think there's a significant difference between the efficacy of votrient and these two other VEGF drugs they tested. Votrient has been popular mainly because of reduced side effects and not because of increased efficacy (somebody correct me if I'm wrong about this).

Appreciate the information.

Todd

MMondi1

todd121 said:

Thank you Thank you!

My gut feeling was that VEGF drugs weren't going to make a difference in adjuvant settings. This makes me doubt I'll do the study. Actually, I'm not going to do the study. I've changed my mind after seeing this. I don't think there's a significant difference between the efficacy of votrient and these two other VEGF drugs they tested. Votrient has been popular mainly because of reduced side effects and not because of increased efficacy (somebody correct me if I'm wrong about this).

Appreciate the information.

Todd

The only thing Ive seen

The only thing Ive seen hinted at is there might be a subset of patients who could benefit from this but I have not come across anything that explains who the subset could be and if its true.  

I was disappointed to see these results. 

My doctor said its the combination therapies in clinical trials that are the ones to get excited about.

 

 

Footstomper

Footstomper said:

Science Daily

Well THAT's a depressing survey!

Well not so depressing after all.

My mrs is a research viral oncologist and pointed out that these studies are only about localised cancers, NOT metastatic ones. So not a great study, but not a terrible one either.

angec

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.)

TW.. do you have a personal

TW.. do you have a personal email? I wanted to forward you something from the dr. i have been speaking about.  I think he may be able to help alot of others on this board. Especially those who are stage one and thinking about trials with bad side affects.

angec

Please email me at

. I have something for you I am totally sure of!