Stage 4 Treatment Plan

Footstomper

Just a guess

Is the first Dr an older chap who perhaps hasnt kept up with the latest research? It does seem to be coming thick and fast.

foxhd

Footstomper said:

Just a guess

Is the first Dr an older chap who perhaps hasnt kept up with the latest research? It does seem to be coming thick and fast.

I was just

making a point. Believe me I wish I had the opportunity for surgical removal. Look at how well Donna has done. I believe she had 2 or 3 procedures to remove mets. Including a lobectomy. I think everyone knows that I strongly believe that we can heal from anything our doctors do to us. Cut me up. Don't care. Because I'll recover. I'd be jogging before you know it. There is no better way to be cancer free than by removing it. This particularly refers to secondary mets post nephrectomy.

This doesn't always pertain to primary kidney tumors. Depending on the case, it often makes sense to use drugs to attempt to shrink it prior to surgery.

hope1111

kidney cancer

Hi, On stage 4 kidney cancer which spread to my lungs. Was on Sutent, now on trials with avasin and new phase 2 drug mpdl320a. Great results in phase 1, so I'm hoping for the best. Please feel free to contact me, I'm here to share and hopefully help others

foroughsh

Everyone is different, but

Everyone is different, but I'm sure i would choose surgery, if possible. when i was diagnosed I wanted that thing out of me ASAP, I was very happy and relaxed during the surgery day because it was the day i got free of that damn "C". worries came from the day after made me feel, thinking will it come back?

todd121

thaxter said:

IL-2 stats

Are more like 8-10 percent complete response, 20 percent partial response. Even during early trials 20 years ago the fatality rate was never that high. And currently I would be surprised if fatalities were even 1 percent.

IL2

The second oncologist I saw said he's treated 346 patients with IL2 and had 1 fatality, and he had some explanation/reason as to why that one occurred (sucks if you're that 1, I agree).

Definitely low in his case. Of course I didn't get to hear other kinds of complication rates...

He's very gung ho on IL2, at least trying it.

What ever happened to PD1? I saw Dr. Figlin last year and he was telling me 30% complete response and another 60% partial response to a PD1 drug. I don't remember which one, but after that I never have heard anything like that again. I was wondering if he maybe spoke too soon when he said that?

Todd

Footstomper

todd121 said:

IL2

The second oncologist I saw said he's treated 346 patients with IL2 and had 1 fatality, and he had some explanation/reason as to why that one occurred (sucks if you're that 1, I agree).

Definitely low in his case. Of course I didn't get to hear other kinds of complication rates...

He's very gung ho on IL2, at least trying it.

What ever happened to PD1? I saw Dr. Figlin last year and he was telling me 30% complete response and another 60% partial response to a PD1 drug. I don't remember which one, but after that I never have heard anything like that again. I was wondering if he maybe spoke too soon when he said that?

Todd

IL2

I dont think anyone on this board who has done IL2  wouldnt do it again in a shot if they thought it could lead to a cure. It wasnt a barrel of laughs but I got to watch lots of PBS documentaries and met loads of frankly inspiring nurses and doctors.

todd121

sblairc said:

To be clear: You have one doctor basically guessing?

Ok, just to get back to the original topic to help Todd with his decisions: 

I am I accurate in reading that you have an opinon from one doctor that has already decided that IF you get any further metastatic disease, he is PRESUMING that there won't be any hope for surgery? "Not likely to be operable"

I guess that is just a red flag to me. How can he say that they are "not likely to be operable" 

That's just where I don't understand. On what basis is this doctor able to tell you that any further mets are "not likely to be operable." This just seems unusual to me, given that all I seem to here is how "unpredictable" kidney cancer is. 

Not Likely To Be Operable

I'll answer several posts at once here. He's not an older doctor that hasn't kept up with the latest. He's a very young doctor that is on top of things. He was trying to get me into a drug study, so I "think" he might have been trying to scare me a little, or at least adjust my reality to the idea that the next tumor(s) aren't likely to be operable, and by that I'm supposing he's assuming if it comes back soon it'll be bones, or multiple mets, etc., in which case many oncologists suggest systemic therapy instead of surgery because it's advanced beyond surgery helping much.

Now that's a lot of assumptions on my part!

Even the second doctor said if I got a single operable tumor within this first year, he wouldn't operate. He'd do IL2.

Some of the confusion, I guess, is that we are doing a lot of hypotheticals here.

Now the second doctor said that the reason he'd use CT with contrast is because the next most likely place for mets is lungs or lymph nodes in the chest/abdomen and they are hard to see and the contrast would help find them early.

I'm inclining toward the second doc just because he was more optimistic, is older, has more experience, and has a good sense of humor. But I'm planning to reserve the right to get second opinions, including from my first doctor, if I need to.

Appreciate all the comments.

Todd

sblairc

Clinical trials

I would trust your instincts. Your comments about the doc and clinical trials are probably right on. Clinical trials help get drugs to the market and participation in cinical trials is very low, which is unfortunate but I understand. I think I'd go with the doctor that would use Il2. That's a good shot at a cure.