Nivolumab Scan Results-New Met

Darron
Darron Member Posts: 310 Member
in Kidney Cancer #1

I had a scan on Thursday and it was my first "bad" scan since starting on Nivolumab in Feb. 2013.

There is a new 6mm met in the lower lobe of my right lung. Everything else remained clear. When we looked back at previous January scan, it was actually there at 3-4 mm and was viewed as a blood vessel. In the back of my mind, I figured that I would see a met at some point, it just stinks it is son soon after being declared NED In January.

the plan if action is to scan again in 6 weeks for a quick snapshot. I continue Nivolumab (one progression allowed) and will start back Sutent per the trial in 6 weeks if stable or nominal increase. If it gets large enough, a resection is planned, if more mets show up, IL-2 is planned. We are trying to knock it out quick.

Antine have good success with a single met from lung removed?

 

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Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    #2
    Very Sorry

    Hi Darron.  I am so very sorry to hear this.

    If you have not done so you might want to ask about removing that single lung met over at SmartPatients.  I think you will hear several different ideas about how best to deal with it.

    Looking at your profile I note that you stopped the Sutent part of the trial back in October 2013.  But now your doctors are acknowledging that this met actually appeared in your CT-scan back in January.  Does this not imply that possibly your NED status was due more to the Sutent than the Nivolumab?  If so, why wait another 6 weeks before starting back on it?

  • Srashedb
    Srashedb Member Posts: 482 Member
    #3
    darron:
    why were you

    darron:

    why were you expecting a met? And, how long since your initial diagnosis? Logically, I agree with nano about the sutent but what did your doctor say? It might be possible to surgically remove the met since it is just one.

    Sarah

  • Darron
    Darron Member Posts: 310 Member
    #4
    NanoSecond said:

    Very Sorry

    Hi Darron.  I am so very sorry to hear this.

    If you have not done so you might want to ask about removing that single lung met over at SmartPatients.  I think you will hear several different ideas about how best to deal with it.

    Looking at your profile I note that you stopped the Sutent part of the trial back in October 2013.  But now your doctors are acknowledging that this met actually appeared in your CT-scan back in January.  Does this not imply that possibly your NED status was due more to the Sutent than the Nivolumab?  If so, why wait another 6 weeks before starting back on it?

    Waiting

    The idea is that Sutent wasn't the active agent. I had stopped it in October and continued to shrink the adrenal met. I have been re-thinking and think that I will propose starting the combo after 3 weeks. I have a vacation planned and do not want to be on Sutent while skiing.

    it does make sense that I was having success with the combo, why not go back to it....

  • Darron
    Darron Member Posts: 310 Member
    #5
    Srashedb said:

    darron:
    why were you

    darron:

    why were you expecting a met? And, how long since your initial diagnosis? Logically, I agree with nano about the sutent but what did your doctor say? It might be possible to surgically remove the met since it is just one.

    Sarah

    Sooner or later

    I was expecting the met because I am stage IV. I already had 3 lung mets and an adrenal tumor.

    details on my profile, but dx in october 2012. Trial on Nivolumab in Feb 2013. Right now, the met is too small for surgery.

  • sblairc
    sblairc Member Posts: 585 Member
    #6
    Darron said:

    Sooner or later

    I was expecting the met because I am stage IV. I already had 3 lung mets and an adrenal tumor.

    details on my profile, but dx in october 2012. Trial on Nivolumab in Feb 2013. Right now, the met is too small for surgery.

    Have a great vacation, come back ready to kick those mets!

    I hope you have a great vacation and come back ready to kick those mets to the curb! 

  • Srashedb
    Srashedb Member Posts: 482 Member
    #7
    Darron said:

    Sooner or later

    I was expecting the met because I am stage IV. I already had 3 lung mets and an adrenal tumor.

    details on my profile, but dx in october 2012. Trial on Nivolumab in Feb 2013. Right now, the met is too small for surgery.

    darron:
    enjoy your ski trip;

    darron:

    enjoy your ski trip; my husband had a laminectomy last summer for a spinal met and the doctor nixed a ski trip this year so take a slope for him! He really missed it.

    sarah

  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    Srashedb said:

    darron:
    enjoy your ski trip;

    darron:

    enjoy your ski trip; my husband had a laminectomy last summer for a spinal met and the doctor nixed a ski trip this year so take a slope for him! He really missed it.

    sarah

    progression

    Cancer just sucks. I understand what you are going through. I also am very happy for those who have remained ned. It is unpredictable. Having your head screwed on tight is one thing, but ending up with it facing in the right direction takes toughness. Darron, your head is properly aligned and it is another challenge but you are up for it. I remember when I thought the nivolumab was going to cure me but the surprises continue. Ski your buns off, eat pizza and beer, and come back refreshed. Then dig your heels in and plan next years ski trip. Show the newbies how it's done.

  • one putt
    one putt Member Posts: 72
    #9
    Darron said:

    Waiting

    The idea is that Sutent wasn't the active agent. I had stopped it in October and continued to shrink the adrenal met. I have been re-thinking and think that I will propose starting the combo after 3 weeks. I have a vacation planned and do not want to be on Sutent while skiing.

    it does make sense that I was having success with the combo, why not go back to it....

    progression

    Sorry about your news. I'm surprised you're only allowed one progression. I'm in the nivolumab/votrient trial and 20%  progression is what knocks you out of my trial. I hope going back to sutent does the trick for you.

    Neil, I've been folowing your status on SP and it seems like things could be moving in the right direction. If anyone can prove immune-based therapies work with chromophobe, it's you. Keep fighting.

  • NanoSecond
    NanoSecond Member Posts: 653
    #10
    one putt said:

    progression

    Sorry about your news. I'm surprised you're only allowed one progression. I'm in the nivolumab/votrient trial and 20%  progression is what knocks you out of my trial. I hope going back to sutent does the trick for you.

    Neil, I've been folowing your status on SP and it seems like things could be moving in the right direction. If anyone can prove immune-based therapies work with chromophobe, it's you. Keep fighting.

    Thank you

    Many thanks for those kind words of encouragement, John. I am certainly trying to give it my best shot.  :)

  • Darron
    Darron Member Posts: 310 Member
    #11
    one putt said:

    progression

    Sorry about your news. I'm surprised you're only allowed one progression. I'm in the nivolumab/votrient trial and 20%  progression is what knocks you out of my trial. I hope going back to sutent does the trick for you.

    Neil, I've been folowing your status on SP and it seems like things could be moving in the right direction. If anyone can prove immune-based therapies work with chromophobe, it's you. Keep fighting.

    I should have said 1st

    One Putt

    I should have said 1st progression. I had to sign new forms, but I am still taking Nuvolumab. I will resumes Sutent in 3 weeks if allowed. My aem was the combination, but was allowed to stop Sutent back in October. I am going back to basics and getting the mix that have me the best results from the start.

    Fox, "I have not yet begun to fight". I have always liked John Paul Jones' words. 

    No worries, today is a good day.

  • Bellweather
    Bellweather Member Posts: 102
    #12
    Keep taking it day by day

    Daron, not news we wanted but I cant help but continue to feel we are all in this together.  You are a great contributor to the mental health of many of the csn family and will continue that important role.  Have a great vacation and keep us posted, we love you brother! 

    Bellweather

  • dancnbear1
    dancnbear1 Member Posts: 86
    #13
    Hang in there. nothing but

    Hang in there. nothing but positive thoughts and prayers coming from my way to you and your family. this is just a small bump that you will beat

  • twinthings
    twinthings Member Posts: 409
    #14
    Sorry you're going thru this,

    Sorry you're going thru this, Darron.  I'll keep you in my prayers. 

    Try to focus on your upcomming vacation and worry about this when you get back.  Easier said than done, I'm sure.  But try.

    Careful on them slopes out there!

     

  • texMD
    texMD Member Posts: 13
    #15
    Sorry to hear about this.  My

    Sorry to hear about this.  My wife's first scan after 8 weeks of nivolumab showed significant progression.  We were given the "one progression allowed" and we're about to get the next scan in 2 weeks.  Overall she's feeling OK but still having significant night sweats, weakness, and weight loss.  We may move to traditional chemotherapy if nivolumab doesn't work for us.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #16
    texMD said:

    Sorry to hear about this.  My

    Sorry to hear about this.  My wife's first scan after 8 weeks of nivolumab showed significant progression.  We were given the "one progression allowed" and we're about to get the next scan in 2 weeks.  Overall she's feeling OK but still having significant night sweats, weakness, and weight loss.  We may move to traditional chemotherapy if nivolumab doesn't work for us.

    So sorry for this news,

    So sorry for this news, Darron. Wishing you better results in 3-6 weeks. It sounds like you are in great frame of mind, though! Way to go!

    Enjoy your ski trip!

    Hugs

    Jojo

  • brea588
    brea588 Member Posts: 240
    #17
    Darron said:

    Sooner or later

    I was expecting the met because I am stage IV. I already had 3 lung mets and an adrenal tumor.

    details on my profile, but dx in october 2012. Trial on Nivolumab in Feb 2013. Right now, the met is too small for surgery.

    darron

    Enjoy ur trip and have a great time on the slopes.  My thoughts and prayers are with you.

  • Srashedb
    Srashedb Member Posts: 482 Member
    #18
    texMD said:

    Sorry to hear about this.  My

    Sorry to hear about this.  My wife's first scan after 8 weeks of nivolumab showed significant progression.  We were given the "one progression allowed" and we're about to get the next scan in 2 weeks.  Overall she's feeling OK but still having significant night sweats, weakness, and weight loss.  We may move to traditional chemotherapy if nivolumab doesn't work for us.

    what is tradional chemo for

    what is tradional chemo for renal cancer? I didn't think they used that for this type of cancer.

    Sarah

  • texMD
    texMD Member Posts: 13
    #19
    Srashedb said:

    what is tradional chemo for

    what is tradional chemo for renal cancer? I didn't think they used that for this type of cancer.

    Sarah

    typically RCC is not

    typically RCC is not responsive for traditional chemo (ie, attacking rapidly dividing cells).  However, it has been used with with aggressive RCC subtypes, notably those with sarcomatoid features.  See: http://www.ncbi.nlm.nih.gov/pubmed/21720184

  • Raine22
    Raine22 Member Posts: 33
    #20
    Darron said:

    Sooner or later

    I was expecting the met because I am stage IV. I already had 3 lung mets and an adrenal tumor.

    details on my profile, but dx in october 2012. Trial on Nivolumab in Feb 2013. Right now, the met is too small for surgery.

    Sooner or later BS

    Did they do a lung biopsy?  Im your friend with similar diagnosis.  In jan, i had all these tests done, due to my new oncologist.   They thought i had a lung met and did biopsy, which turned out negative, but my lung collapsed - not pleasant.  Adrenal tumor appears to have grown, but im very hesitant to remove it at this,point.  Found out in Feb that i was getting the placebo, so i guess thats good news.   I go back 4/21 for more scans and hopefully determine if i should get on some treatment or get it removed.  I wish you luck and my prayers are with you!  

  • Darron
    Darron Member Posts: 310 Member
    #21
    Raine22 said:

    Sooner or later BS

    Did they do a lung biopsy?  Im your friend with similar diagnosis.  In jan, i had all these tests done, due to my new oncologist.   They thought i had a lung met and did biopsy, which turned out negative, but my lung collapsed - not pleasant.  Adrenal tumor appears to have grown, but im very hesitant to remove it at this,point.  Found out in Feb that i was getting the placebo, so i guess thats good news.   I go back 4/21 for more scans and hopefully determine if i should get on some treatment or get it removed.  I wish you luck and my prayers are with you!  

    No biopsy

    No, waiting to see if it gets bigger. send me a message and tell me about what you has with the lung. I want to learn from your experience. Hopen you scan well and keep the adrenal.

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