Initial Staging Scans

MattInVa
MattInVa Member Posts: 50
in Kidney Cancer #1

Got my inital staging bone/brain and lung scans

 

Good news, I have no mets in the bone or brain.

Not so good news, I have 11 nodules throughout my lungs. Largest is 2cmx2cm. Most are smaller, under a cm in size.

I am at a crossroad as to which therepy to try. I wish I knew how fast they are growing and it may give me a idea.

I am considering the IL2 to try for a home run on knocking it back or out.

I am scheduling an appointment with Hopkins before I do anything. I want to investigate trials before I get on a pill that would exclude me from some of the trials. The ONC didn't see any problem going a couple of weeks before starting a treatment.

It seems the first time selecting Sunitnib Pazopanib or the like is a shot in the dark anyway. They have no idea if its working or if one woud work better without experimentation. I wish they could take a culture of my tumors and see what worked best.

I want to start on a treatment but not before I talk to several specialists from Hopkins and MD Anderson.

 

Matt

 

 

Comments

  • Srashedb
    Srashedb Member Posts: 482 Member
    #2
    Staging

    Matt:

     you may have an idea of how fast once the tumor is graded; it can be 1-4 with 1 the least aggressive.

    Good for you in seeking more opinions; renal cancer is a strange one with many things that a renal oncologist can provide the best information

    Sarah

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #3
    IL2

    Bit rough but halted my cancer and even reduced it for a while

  • todd121
    todd121 Member Posts: 1,448 Member
    #4
    Good luck

    Not a bad idea to get more opinions. It's one of the things that are big unknowns with treating our cancer. They don't know what treatments to use in what order (or even what to combine).

    IL2 is rough.

    I saw an RCC specialist at USC when my cancer returned in February. He said if it comes back again in the next year, he'd want to try IL2 before anything else. I asked about safety, he said he'd given treatment to something like 300 patients with one fatality (and they understood what happened in that case so it won't happen again). He said he's had great results with it.

    I heard the other day that one of the PD-1 drugs just received fasttrack approval from the FDA. It might be worth a try. This is the immune based treatment. I believe it's had better results and lower toxicity than IL2. Did anybody mention it? Actually, I'm not sure if fasttrack approval means it's approved or means it's going to get approved faster. Still, might be worth looking into. And I think there's some studies that are combining it with one of the TKI's.

    The good news is there are lots of things to try that have worked to varying degrees. That's great news.

    Wishing you the best. Please keep us informed.

    Todd

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #5
    todd121 said:

    Good luck

    Not a bad idea to get more opinions. It's one of the things that are big unknowns with treating our cancer. They don't know what treatments to use in what order (or even what to combine).

    IL2 is rough.

    I saw an RCC specialist at USC when my cancer returned in February. He said if it comes back again in the next year, he'd want to try IL2 before anything else. I asked about safety, he said he'd given treatment to something like 300 patients with one fatality (and they understood what happened in that case so it won't happen again). He said he's had great results with it.

    I heard the other day that one of the PD-1 drugs just received fasttrack approval from the FDA. It might be worth a try. This is the immune based treatment. I believe it's had better results and lower toxicity than IL2. Did anybody mention it? Actually, I'm not sure if fasttrack approval means it's approved or means it's going to get approved faster. Still, might be worth looking into. And I think there's some studies that are combining it with one of the TKI's.

    The good news is there are lots of things to try that have worked to varying degrees. That's great news.

    Wishing you the best. Please keep us informed.

    Todd

    IL2

    It is a bit rough. Its not unbearable. If I was offered it, I would do it again in a nanosecond.

  • MattInVa
    MattInVa Member Posts: 50
    #6
    todd121 said:

    Good luck

    Not a bad idea to get more opinions. It's one of the things that are big unknowns with treating our cancer. They don't know what treatments to use in what order (or even what to combine).

    IL2 is rough.

    I saw an RCC specialist at USC when my cancer returned in February. He said if it comes back again in the next year, he'd want to try IL2 before anything else. I asked about safety, he said he'd given treatment to something like 300 patients with one fatality (and they understood what happened in that case so it won't happen again). He said he's had great results with it.

    I heard the other day that one of the PD-1 drugs just received fasttrack approval from the FDA. It might be worth a try. This is the immune based treatment. I believe it's had better results and lower toxicity than IL2. Did anybody mention it? Actually, I'm not sure if fasttrack approval means it's approved or means it's going to get approved faster. Still, might be worth looking into. And I think there's some studies that are combining it with one of the TKI's.

    The good news is there are lots of things to try that have worked to varying degrees. That's great news.

    Wishing you the best. Please keep us informed.

    Todd

    Approval of checkmate 025

    Thanks,

    I heard they approved checkmate 25 and its fast tracked for limited use. I also read good results about checkmate 214 but accoring to Hopkins they are no longer taking applicants as of last week.

    The doctors I have consulted say because I am younger (45) fit and no underlying conditions I would be a good candidate for IL2.

    My worry is they don't know my progression rate until they scan me again in Nov.

    My tumor was a grade 4 pt3b,pn0 nothing in my nodes which they removed, but I still have mets in the Lungs (11)

     

    Matt

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