Fox

I was recently diagnosed with rcc and had my kidney removed a month ago. Pathology report stated it as stage 3 (no Lymph) grade 3 which I was told meant it was aggressive. Although I have been sent from my urologist to a oncologist, I still feel confused. The urologist said there was new pill out that was being used for preventative for grade 3 rcc but the oncologist did not seem to push it. Has anyone heard of it or have any feed back. I am one that likes to know what is going on and I was just told I had 50% chance of it returning?? Anyone have advice. I am new to all of this and I do not know what Uncle ned means?

sedonaman said:

Any one heard of sutent being used as a preventative?

I was recently diagnosed with rcc and had my kidney removed a month ago. Pathology report stated it as stage 3 (no Lymph) grade 3 which I was told meant it was aggressive. Although I have been sent from my urologist to a oncologist, I still feel confused. The urologist said there was new pill out that was being used for preventative for grade 3 rcc but the oncologist did not seem to push it. Has anyone heard of it or have any feed back. I am one that likes to know what is going on and I was just told I had 50% chance of it returning?? Anyone have advice. I am new to all of this and I do not know what Uncle ned means?

Bit subjective.  Lots of new treatments for metastatic RCC in recent years.  Check our immunotherapy for a start.

And educate your medico's.  This is important for you.

Best Wishes

Thinking about you and sending you BIG HUGS!

XOXOXO

Jojo

Fox!!! We are all with you. So sorry for your current situation. You are an amazing man. Don't ever forget that.

todd121 said:

Adjuvant Therapy

I actually didn't realize they had approved Sutent to be used as an adjuvant therapy (taking drugs to prevent cancer recurrence instead of just taking drugs to treat existing cancer) until I went to google it just now. I also had Stage 3 Grade 3 about 6 years ago and had a nephrectomy. At that time they were doing clinical studies with Votrient and Everolimus (as I remember). I actually did the study with Everolimus for 1 year. However, my cancer returned in my adrenal gland 2 years after my first tumor was removed and they unblinded me from the study and I found out I had been on the placebo arm.

As far as I know only Sutent has been approved for adjuvant therapy. The FDA report I read said that after five years following something like 615 patients, 58% of the placebo arm had their cancer return while 51% of the Sutent arm had their cancer return. I wouldn't call that stellar performance (check with your oncologist, but maybe that's why he/she wasn't pushing it). The drug is a hard drug to be on. It has a lot of side effects and can damage your liver. If you decide you want to look into it, you might want to really look into the side effects of Sutent.

I was told I had somewhere between a 30-50% chance of my cancer returning. It did return.

If it were me, I'd go for close surveillance instead of taking a drug like Sutent with those kinds of results. After my cancer returned I was offered another drug study to take Votrient as adjuvant therapy. In that study they were looking at Stage 4 RCC patients that were NED after surgery. I declined to do another study. I really didn't want to take Votrient as a trial when I had no cancer.

One of my fears about taking these drugs as adjuvant therapy, is, we know that these drugs most of the time lose their efficacy and have to be replaced with another drug. I don't think they know long term how taking the drug before you even have cancer will affect how long they will work if your cancer returns while you are on the drug. It might be that you would lose the ability to use that drug right away (because it'd obviously be not working if you got cancer while on it).

You should really discuss all of this with your oncologist. Ask why they don't recommend the adjuvant therapy use of Sutent for you.

I would push for close surveillance and I would keep it going longer than what they recommend. For me it was CT of chest/abdomen/pelvis (with contrast if possible) every 3 months the first year, every six months the second year forward. However, when my cancer returned and was removed my oncologist felt I needed to be on a 3 month follow-up indefinitely.

Make a list of your questions and take them to an appointment and ask your oncologist all of your questions. You deserve full answers to all of your questions and you deserve to have all of this explained. You may have a better idea of what to ask after reading and posting here for awhile. A list is really important so you don't forget anything. Take someone with you to listen to the answers. That helps too.

Best wishes,

Todd

 

Thank you Todd for all your great information. All of this can be so confusing and I appreciate all the knowlege I can get. I will take your advice and ask questions! If you dont mind be asking, how long was it when you cancer came back and where was it. This is a fear of mine but I understand what you are stating about being on meds for preventative and not being able to use it later if comes back. Thanks again for listening to me and responding with great ideas and thoughts.

Still thinking of you, Fox. Every day. Wishing you nothing but the best.

I am  not a  fan of people knocking on our door to ask you how you are

but i think of you and pray for you every day

Sending strength and much love from across the big pond

Annie

i love you Big Guy... changed me a lot