2006 HAD KIDNEY REMOVED-IT'S BACK

Hugs!   I take Votrient.  Wondering if they are considering targeted therapy for you?

Is that really the only treatment youve had? I find that astonishing on a tumour that size. There are so many immunotherapy treatments out there now, surely your doc would prescribe one. Are you living in the middle of nowhere. Is there a teaching hospital near you?

Steve51 said:

First, thank you for the

First, thank you for the imput. My health care provider was Kaiser Permanente in Los Angeles. Now I'm being treated at the City of Hope in So. California. I am very lucky to be here. What great people. I will be having surgery next month. And, I'll be back to comment on new drugs I'll be on. Thanks again

You are at a hostpital with cutting edge care for kidney cancer. You will get good treatment, the best in So Cal as many will agree. Trust your doc's. Best to you. 

Sounds very familiar to my story. Right kidney removed. remission for 9 years mets to lungs. Scary as hell only to be delt with one day at a time. I am on cabometyx now and am very happy with the lack of any bad side effects. Best wishes and God bless you.

Steve51 said:

First, thank you for the

First, thank you for the imput. My health care provider was Kaiser Permanente in Los Angeles. Now I'm being treated at the City of Hope in So. California. I am very lucky to be here. What great people. I will be having surgery next month. And, I'll be back to comment on new drugs I'll be on. Thanks again

I agree. City of Hope is a great place for treatment. So good to hear you're able to go there. All the best, keep us posted...

Oh Steve, sorry you are going through all of this, enuff!!

But know we're here for you along the way, all the way!

Remember that. So many here are still fighting the fight!

We will walk along side you! Keep us posted!

Hugs, Jan

It's good to hear that the surgery went well.

Looking forward to hearing updates as they come.

Steve51 said:

MADE IT THROUGH SURGERY

Again, thank you all. Your words and kindness mean so much.

Surgery was Tues 11/1 and it went well. It was right lung very close to the heart. It was tricky, but Dr gave a thumbs up. I'm doing okay and hoping to mend quickly. I will have a follow up appt with the surgeon on Nov 10th and another appt with the oncologist Dec 7th. I will let you all know what treatments I will be receiving from the City of Hope. I'm very curious about the treatment. If they believe they got it ALL, will I still be treated with drugs? I have never received any treatment except surgery. By the responces here, I can see some of you are surprised. I am clueless.  Everyone is absolutely great at City of Hope and I am very fortuninate for them and this forum. 

Hi Steve. I'm also at City of Hope. My oncologist is Dr. Pal. Who are you seeing from oncology?

I had a met to my adrenal gland after 2 years cancer free. Now it's been almost 2 years since my adrenalectomy.

I got a couple consults after the adrenal gland. I think if you're tumor free after surgery, there's no standard approved treatment. They had a couple of studies going on. They wanted me to do one after my adrenalectomy, but I decided no to do it. It was votrient or placebo I think. I'd done a similar study after my nephrectomy and decided I didn't want to do another.

The oncologist told me if I had a recurrence within a year, they'd probably not do surgery again and instead do medication. If over a year out, and operable, they'd probably take it out.

Glad you got through the surgery ok. I like City of Hope. I had my nephrectomy at UCI Medical Center and was very happy with the surgeons there. Somehow at COH, I felt like they do so many of these, that maybe it's a little too routine (on my adrenalectomy). I had a complication on the adrenalectomy. I was allergic to the surgical glue. Wow. It took a long time to heal and was very annoying. They acted like it was no big deal at all. I didn't care for that! I thought the nurses in the hospital were top notch.

Wishing you the best. Hope you're done with this. I'm very curious what medication, if any, they will give you. Also if you don't mind, I'd love to know what oncologist you are seeing. I've only ever saw Dr. Pal at COH. I have had second opinions at Cedars and USC. BTW, Cedars has a kidney cancer support group that meets once a month. We have a speaker (RCC related) and fellowship. If you're interested send me a message and I'll send you the information.

Best wishes,

Todd

Regards,

Todd

Steve51 said:

Update and Looking for Imput

I had surgery on the right (again) 11/1 and a small tumor was removed. It was near the heart so blood vessels were involved and made it difficult. My recovery seemed slower than Aug 2015. Maybe age is catching up with me (65).

The follow up with my Dr. was okay. He seemed to think there would be a good chance I could see more tumors in the near future. Because I am tumor free at this time, I was asked to be part of a study. Some people would receive a placebo and some Pazopanib. It's my understanding that Pazopanib can slow down or shrink tumors. The researchers want to find out by taking this drug before the growth, it could possibly prevent new growths. The risks of course are side effects and the study not being successful. If I don't take part in the study, my life is normal until the next scan shows something new. I have until the end of Jan to decide.

I would love to hear from anyone who has experience / information or just thoughts.

I hope everyone is doing better than yesterday and we continue to have something to look forward to.

 

Better known as Votrient. It has been taken by many people on this board but not me.