What to expect

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  • todd121
    todd121 Member Posts: 1,448 Member
    #22
    Welcome

    Sorry you have to join us on this site.

    Nobody knows how long you'll live or what you'll die of. Don't believe them.

    They probably don't know that much about RCC. It's a rare(r) cancer and used to be a scarier thing than it is now. There are lots of new treatments helping us.

    Who is in charge of your care? Who is ordering all these scans? It's very odd to have a CT while you're still in the hospital. Usually they'd do a baseline scan a month or two after you've healed from the surgery. They can't see very well in the abdominal area right after surgery due to all the swelling, pooled blood, inflammation, etc. And they want a baseline to look for changes.

    Get to a specialist in RCC (everybody said this). A medical oncologist who is involved in RCC research. Preferably at a cancer hospital/cancer center or university medical school.

    Did they even get your pathology back before they told you about your lungs? I didn't even get my pathology back until 2-3 weeks after my surgery and I was home. The pathology is needed to confirm what you have (type of cancer, grade, stage). Are they sure what's in your lungs? I've had small nodules in my lungs for 3 years that haven't changed in size, so they just ignore them.

    I'm not saying that's not what it is, I'm just saying you need more information from somebody that deals with this disease a lot.

    There are clinical trials going on with some new immune based drugs. Some are combined with some of the other new drugs. They've had luck in many patients with shrinking tumors, or keeping them stable.

    Take a deep breath. Try and relax. And don't believe the jerk who told you you're going to die of this. I mean, you might get hit by a bus tomorrow...Lol. Sorry. I couldn't resist. The point is, you don't know/we don't know! Our challenge? Learning to live in the unknown (where we always were, but too dumb to know it).

    You can do this.

    Wishing you the best,

    Todd

    P.S. Rt nephrectomy December 2012 (stage 3, grade 3), symptoms like yours. Met found in adrenal gland in January, removed my right adrenal February of 2015, welcome to Stage 4.

  • MattInVa
    MattInVa Member Posts: 50
    #23
    dhs1963 said:

    Go to Dr. Hans Hammers at Hopkins

    He understands the disease.

    Iactually got Dr Hammers on

    Iactually got Dr Hammers on the phone the other day by calling his office directly and talked to him. As of now I am ineligible for trials due to my lung mets being under 1 cm (9mm). Of course I only have a scan on my lower lungs that where caught when they did my abdomen. I have further scans for bone and brain and a full lung CT on mon/tue so that may change my eligbility for trials.

     

    He suggested I be very aggressive with treatment and try in the IL2 to see if it can be knocked back (All dependent on my scan results). I am setting up appointment with hime when he gets back from a trip. He told me I also missed the checkmate 214 trials by a few days,they just closed them.

     

    I do have some questions before then.

     

    Can I begin the standard pill treatments before the IL2?

    Will it interfere with it?

    I want to start treatmet ASAP to try to keep the mets at bay.

     

    Thanks,

    Matt

     

     

  • MattInVa
    MattInVa Member Posts: 50
    #24
    todd121 said:

    Welcome

    Sorry you have to join us on this site.

    Nobody knows how long you'll live or what you'll die of. Don't believe them.

    They probably don't know that much about RCC. It's a rare(r) cancer and used to be a scarier thing than it is now. There are lots of new treatments helping us.

    Who is in charge of your care? Who is ordering all these scans? It's very odd to have a CT while you're still in the hospital. Usually they'd do a baseline scan a month or two after you've healed from the surgery. They can't see very well in the abdominal area right after surgery due to all the swelling, pooled blood, inflammation, etc. And they want a baseline to look for changes.

    Get to a specialist in RCC (everybody said this). A medical oncologist who is involved in RCC research. Preferably at a cancer hospital/cancer center or university medical school.

    Did they even get your pathology back before they told you about your lungs? I didn't even get my pathology back until 2-3 weeks after my surgery and I was home. The pathology is needed to confirm what you have (type of cancer, grade, stage). Are they sure what's in your lungs? I've had small nodules in my lungs for 3 years that haven't changed in size, so they just ignore them.

    I'm not saying that's not what it is, I'm just saying you need more information from somebody that deals with this disease a lot.

    There are clinical trials going on with some new immune based drugs. Some are combined with some of the other new drugs. They've had luck in many patients with shrinking tumors, or keeping them stable.

    Take a deep breath. Try and relax. And don't believe the jerk who told you you're going to die of this. I mean, you might get hit by a bus tomorrow...Lol. Sorry. I couldn't resist. The point is, you don't know/we don't know! Our challenge? Learning to live in the unknown (where we always were, but too dumb to know it).

    You can do this.

    Wishing you the best,

    Todd

    P.S. Rt nephrectomy December 2012 (stage 3, grade 3), symptoms like yours. Met found in adrenal gland in January, removed my right adrenal February of 2015, welcome to Stage 4.

    Thanks

    Thank you everyone.

     

    I am getting my thoughts together now.

    I go with my guts and I did not get a good feeling from the oncologist I saw. So I am pursuing specialts at Hopkins, Dr. Hammers in particular

     

    I am also pursuing disability also, since my job is very physically demanding and It will be a while if ever I before can go to work. If i can get soc sec disabilty I may be eligible to draw a military pension also.

    I have to think about my financial responibilities too.

    I find myself questioning if I will need my retirement fund.

    Strange to have to think much shorter term now.

     

    Matt

     

  • sblairc
    sblairc Member Posts: 585 Member
    #25
    MattInVa said:

    Thanks

    Thank you everyone.

     

    I am getting my thoughts together now.

    I go with my guts and I did not get a good feeling from the oncologist I saw. So I am pursuing specialts at Hopkins, Dr. Hammers in particular

     

    I am also pursuing disability also, since my job is very physically demanding and It will be a while if ever I before can go to work. If i can get soc sec disabilty I may be eligible to draw a military pension also.

    I have to think about my financial responibilities too.

    I find myself questioning if I will need my retirement fund.

    Strange to have to think much shorter term now.

     

    Matt

     

    Hans Hammers is well respected. Also ask about other immuno

    Hans Hammers is an expert doctor. 

    But there are other immunotherapy drugs (Opdivo and Keytruda) that should be considered in my opinion, if he hasn't addressed them. I think they are available off lable for kidney cancer

    Darron posts on here and has done amazing on his clinical trial of nivolumab now known as Opdivo. They are working well on kidney cancer and are well tolerated for side effects from what I understand. 

     

    I would certainly get some medical opinions on those options. 

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