Looks like mets for me

paintergrl
paintergrl Member Posts: 47
edited June 2018 in Kidney Cancer #1

I found out today that my 9mm nodule on my lung has grown to 1.4cm in 1 month. We did extra scans to see if I could get in a drug trial. Not going to get in this drug trial, obviously. There are a few other tiny spots nearby in my lung. No other spots so far. Biopsy will be very soon and my Oncologist is researching drug options. We are shocked but also knew this was a real possibility. My radical nephrectomy was 3/23. I feel good physically. Any one have advice? My husband is taking it hard and we are going to tell our kids soon. My Dr was pretty optimistic about treatment and felt good about finding it so early. 

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Comments

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    #2
    surgery............

    Id try to have it surgically removed, and if that doesnt work then go on the drugs,JMO. Good luck.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #3
    So Sorry

    you have had this blow

    there are now many treatments for you to try... votrient seems very promising for some

    go to smart patients for  more info

    I don’t have mets but I do how tough this is for your family and yourself

    Your children are very young and you have that worry to cope with as well

    many Hugs

    Annie

     

  • msjax
    msjax Member Posts: 20
    #4
    Smart Patients

    Sorry to hear this news -- hope you find some good answers for your situation.

    I agree with Annie above, go to https://www.smartpatients.com/conversations -- excellent knowledge and support.

    Thinking of you!

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #5
    msjax said:

    Smart Patients

    Sorry to hear this news -- hope you find some good answers for your situation.

    I agree with Annie above, go to https://www.smartpatients.com/conversations -- excellent knowledge and support.

    Thinking of you!

    Stay strong

    Hopefully they can get a handle on this real soon.

     

     

    icemantoo

  • paintergrl
    paintergrl Member Posts: 47
    #6
    Thanks

    Thanks for your support! I got a call at 8pm tonight from the Renal Onocologist at UCHealth in Denver. She offered to enroll me in a study where I would get a combo of cabozantinib and pembrolizumab. I have an appointment on Monday at 9am! No messing around. No biopsy is required and we could start in about 2 weeks, maybe less. It sounds promising. I need to do more research and will check out Smart Patients. Its been a rough day for sure but I feel some hope. 

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    #7
    Sending prayers and support

    I am so sorry you are going through this. I am happy to hear that you will be starting treatment soon. I pray that it shrinks those mets. I pray for you and your family for strength, comfort, peace and healing. Hang in there. 

  • Amy_Jo
    Amy_Jo Member Posts: 70 Member
    #8
    paintergrl said:

    Thanks

    Thanks for your support! I got a call at 8pm tonight from the Renal Onocologist at UCHealth in Denver. She offered to enroll me in a study where I would get a combo of cabozantinib and pembrolizumab. I have an appointment on Monday at 9am! No messing around. No biopsy is required and we could start in about 2 weeks, maybe less. It sounds promising. I need to do more research and will check out Smart Patients. Its been a rough day for sure but I feel some hope. 

    I was diagnosed in February

    I was diagnosed in February had my left kidney removed March 8 2018. I was told my pathology was clear and I was cancer free. Two months later I have Mets in my liver lungs and spine. It is devastating I have 4 children 2,5,13,16. I have shared with my oldest what's going on and my Oncology office offers a social worker to help with the stress of it all. My oncologist started me on a combination of yervoy / opdivo. I recently had a second opinion and have decided to change care providers. My new oncologist offer a genetic testing and physician which was never offered by my first oncologist. I know it's hard stay positive I will keep you in my prayers. 

  • paintergrl
    paintergrl Member Posts: 47
    #9
    Amy_Jo said:

    I was diagnosed in February

    I was diagnosed in February had my left kidney removed March 8 2018. I was told my pathology was clear and I was cancer free. Two months later I have Mets in my liver lungs and spine. It is devastating I have 4 children 2,5,13,16. I have shared with my oldest what's going on and my Oncology office offers a social worker to help with the stress of it all. My oncologist started me on a combination of yervoy / opdivo. I recently had a second opinion and have decided to change care providers. My new oncologist offer a genetic testing and physician which was never offered by my first oncologist. I know it's hard stay positive I will keep you in my prayers. 

    Thanks

    I've seen your post and have been thinking of you. I have two boys 11 & 13. I have also been meeting with the social worker at the Oncologists office and utilizing all the support systems I can. I hope you get on the very best treatment possible and kick those buggers out of your body! Praying for you!! Appreciate every day!! 

  • paintergrl
    paintergrl Member Posts: 47
    #10
    Thanks

    I've followed your posts and have thought a lot about you. I hope for the best treatment for you and for all of us! 

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    #11
    Amy_Jo said:

    I was diagnosed in February

    I was diagnosed in February had my left kidney removed March 8 2018. I was told my pathology was clear and I was cancer free. Two months later I have Mets in my liver lungs and spine. It is devastating I have 4 children 2,5,13,16. I have shared with my oldest what's going on and my Oncology office offers a social worker to help with the stress of it all. My oncologist started me on a combination of yervoy / opdivo. I recently had a second opinion and have decided to change care providers. My new oncologist offer a genetic testing and physician which was never offered by my first oncologist. I know it's hard stay positive I will keep you in my prayers. 

    Treatment

    I start yervoy/opdivo on Wed. I am curious how it went for you and what led you to change care providers? And are you starting a new treatment regiment?

  • marosa
    marosa Member Posts: 334 Member
    #12
    Paintergrl, sending

    Healing thoughts your way.  Wishing you the best in your treatment. Be well and stay strong.

  • Tapman63
    Tapman63 Member Posts: 137 Member
    #13
    Best Wishes...

    ...hang in there and stay positive - I hope you find a treatment that'll take care of eveything and get you healthy quickly.

     

    Jim

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    #14
    I also want to add my best

    I also want to add my best wishes and hope your treatments go well and work quickly. Will be watching your progress! Take it easy on yourself.

  • Manufred
    Manufred Member Posts: 241 Member
    #15
    We have come a long way

    Trials to date have unearthed a range of possible treatments for mRCC which are now becoming main stream treatment options, as a number of your cases demonstrate. 

    It will always be a terrible shock to be diagnosed, but at least these days there is reason to think medical treatment can win, and with less SE's than the old-style chemo. 

    I sincerely hope both of you have a good outcome from whatever treatment you receive.

    Best wishes,

    Fred

  • paintergrl
    paintergrl Member Posts: 47
    #16
    meeting with 2 Oncologists today

    Spent the morning with the Renal Oncologist at UCHealth today. We will meet with my regular Oncologist this afternoon to talk about what he thinks is our best course of action. I'm thankful to have options and motivated doctors! Being spacy and distracted after my surgery I forgot that I was Chromophobe with some Sarcomtoid features. Good things in my favor are my mets are only in my lungs (so far) and small. Largest is 1.4 cm. We are hoping to start treatment soon - like next week. 

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #17
    I defer to those who have been on drugs,

    But wish you well as you enter a new phase.

    Hugs,

    donna_lee

  • todd121
    todd121 Member Posts: 1,448 Member
    #18
    paintergrl said:

    meeting with 2 Oncologists today

    Spent the morning with the Renal Oncologist at UCHealth today. We will meet with my regular Oncologist this afternoon to talk about what he thinks is our best course of action. I'm thankful to have options and motivated doctors! Being spacy and distracted after my surgery I forgot that I was Chromophobe with some Sarcomtoid features. Good things in my favor are my mets are only in my lungs (so far) and small. Largest is 1.4 cm. We are hoping to start treatment soon - like next week. 

    Surgery or Radiation?

    Are they inoperable? A number of my friends have had mets in lungs either surgically removed or zapped with radiation (using the cyber knife radiation I think they call it, stereotactic radiation).

    Are you seeing an RCC medical oncologist? Not clear what kind of doc you are seeing from your posts. Is there some reason surgery/radiation is off the table? All the RCC oncologists I've seen have said this is preferred to systemic treatment (that is, drugs) if it is possible.

    Wishing you the best,

    Todd

  • paintergrl
    paintergrl Member Posts: 47
    #19
    todd121 said:

    Surgery or Radiation?

    Are they inoperable? A number of my friends have had mets in lungs either surgically removed or zapped with radiation (using the cyber knife radiation I think they call it, stereotactic radiation).

    Are you seeing an RCC medical oncologist? Not clear what kind of doc you are seeing from your posts. Is there some reason surgery/radiation is off the table? All the RCC oncologists I've seen have said this is preferred to systemic treatment (that is, drugs) if it is possible.

    Wishing you the best,

    Todd

    inoperable

    The spots on my lungs are spread around so they are inoperable. I will ask about radiation. No one has mentioned that. I have an medical oncologist with Kaiser and then a Renal Oncologist at University of Colorado, Dr. Lam. Dr. Lam specializes in RCC. We decided to do the trial with UC. Its a drug + immunotherapy. Everyone agreed it is the best option for me for now. Hopefully, we'll start early next week. Thanks for the ideas, though. I will ask about radiation. 

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    #20
    All the best - positive vibes

    All the best - positive vibes for a great outcome with this treatment.  We're all in this with you.

    Ryan

  • paintergrl
    paintergrl Member Posts: 47
    #21
    todd121 said:

    Surgery or Radiation?

    Are they inoperable? A number of my friends have had mets in lungs either surgically removed or zapped with radiation (using the cyber knife radiation I think they call it, stereotactic radiation).

    Are you seeing an RCC medical oncologist? Not clear what kind of doc you are seeing from your posts. Is there some reason surgery/radiation is off the table? All the RCC oncologists I've seen have said this is preferred to systemic treatment (that is, drugs) if it is possible.

    Wishing you the best,

    Todd

    spread

    I think they are doing a systemic approach because my cancer is grade 4 and actively spreading. We are hoping to keep it from spreading more and to other areas. 

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