Failed both Votrient and Opdivo

BellaBinksMom
BellaBinksMom Member Posts: 78
edited June 2016 in Kidney Cancer #1

I am hesitant to post this, because, once I do, it becomes real. Had my three month scan after starting on Opdivo and my cancer has progressed signifcantly - to my liver, to my back deltoid muscles, to the soft tissue in my left flank, extensively in the chest lymph nodes and there is some shadowing in the left temperal lob of my brain. A brain MRI next Tuesday will tell us how significant the spread is to my brain.

Unfortunately, my oncologist has stated my cancer is resistant to treatment.

 

I will be taking the next 3 months away from work to determine what my options are at this point.

 

Prayers are appreciated. Thank you for being here my friends.

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Comments

  • APny
    APny Member Posts: 1,995 Member
    edited June 2016 #2
    I am so very sorry. I cannot

    I am so very sorry. I cannot imagine what it's like to hear such bad news. I will hold you in my thoughts and prayers. There must be some alternative medication or treatment. Much love and hugs to you.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #3
    Thinking of You

    Sounds awful! Have you tried a second opinion? There are even newer drugs/treatments coming on line, perhaps you could get on a trial?

    I'm sure you have thought of all these things.

    Good luck. Be sure we are all thinking of you

  • hardo718
    hardo718 Member Posts: 853 Member
    #4
    I'm so sorry

    I will definitely be praying for you & that something will present itself that will work. 

    Continue to enjoy each precious moment you can.

    Hugs & Love,

    Donna~

  • Shecka1121
    Shecka1121 Member Posts: 117 Member
    #5
    I am sorry to hear of your

    I am sorry to hear of your struggle and I will pray for you.  I hope you find a new treatement that works.  

  • NewDay
    NewDay Member Posts: 272
    #6
    RCC specialist?

    Are you seeing an RCC specialist?  I would think he would urgently start you on another treatment.  There are 7 other drugs in the arsenal.  Most people do not respond to Opdivo.  Many people will respond to one TKI and not another or MTOR inhibitors instead.  I know you are very discouraged, but I would be pushing to get started on something else quickly.  In the meantime, I will be praying for you.

    Kathy

  • todd121
    todd121 Member Posts: 1,448 Member
    #7
    Opdivo Failing

    Hi Debbie. I'm so sorry to hear this news. I went to look at your bio, and there's very little recent information there so it's hard for me to make any useful comments. I don't know when they found your mets or what other drugs you might have tried.

    In any case, prayers for you. This I can do. I'm guessing your docs are doing their best.

    Wishing you well,

    Todd

  • Yeric
    Yeric Member Posts: 65
    #8
    Sutent

    Have you tried sutent? Make no mistake.  It is a tough drug to take.  However if there is something in the brain, there is not a better medication. 

    Do look for an RCC specialist.  Other than us, of course. 

    Good Luck

    Bobby

  • BellaBinksMom
    BellaBinksMom Member Posts: 78
    edited June 2016 #9
    Thank you everyone

    My current oncologist is recommending Cabozantinib as my next treatment.  I will be seeing my oncologist tomorrow to discuss all options, including a referral to UCSF to inquire on clinical trails.  However, my concern is that if I start Cabo, will I disqualify myself for clinical trials that may help.  We will have to make a decision tomorrow on course of action as my cancer appears to be very aggressive at this point.

  • NewDay
    NewDay Member Posts: 272
    #10
    Next step

    Going to UCSF is a great idea as long as you can get in pretty quickly.  I think it can take some time to get accepted int a trial so you want to get the process started ASAP since your disease has become aggressive.  Some trials do exclude people based on prior treatments.  Also, some trials won't accept people with active brain metastasis.

    I hope that you can see an RCC expert to be sure the right decisions are being made for you.  I know that Nivo and Cabo are the most recently approved drugs, but that doesn't necessarily mean that they are the best choice for every patient.

  • Bellweather
    Bellweather Member Posts: 102
    #11
    Loss for words

    I am praying that you find an effective treatment, know that you are in my prayers.

    Sincerely,

    Bell

  • foroughsh
    foroughsh Member Posts: 779 Member
    edited June 2016 #12
    I am praying for you, may the

    I am praying for you, may the new drug brings hope and peace of mind for you

    You are in my thoughts and prayers

    Forough

  • todd121
    todd121 Member Posts: 1,448 Member
    edited June 2016 #13
    BellaBinksMom said:

    Thank you everyone

    My current oncologist is recommending Cabozantinib as my next treatment.  I will be seeing my oncologist tomorrow to discuss all options, including a referral to UCSF to inquire on clinical trails.  However, my concern is that if I start Cabo, will I disqualify myself for clinical trials that may help.  We will have to make a decision tomorrow on course of action as my cancer appears to be very aggressive at this point.

    If you can reach the oncologist's nurse at UCSF, I would expect you can get in quickly. They'll need all your medical records and scans. You can usually hand carry those things and get them within a day or two if you are willing to go pick them up. I've done this a couple of times now.

    In my experience an RCC specialist oncologist is absolutely worth it. They really keep up on this disease. Dr. Figlin in Cedars/Los Angeles told me that he sees in a day the same number of patients with RCC as a normal oncologist does in a year or two. The field is fast changing and very specialized.

    Regards,

    Todd

  • Srashedb
    Srashedb Member Posts: 482 Member
    #14
    Votrient

    Am I remembering incorrectly ? I thought you were doing well on votrient and the onc switched you to optivo. I seem to recall your asking here about that.

    af any rate, I think you will get excellent care at ucsf; my husband has been treated there for last 3 years and the docs are great.

    Sarah

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited June 2016 #15
    Well, my dear, I am sorry for

    Well, my dear, I am sorry for what you are going through. Shock, confusion, disappointment, whatever. No one wants to learn their medication is not helping. However, your post made me think of Fox and how he was told he wasn't going to make it, that certain drugs didn't work etc etc. AND he's still with us, doing much better! Write to him, via direct message.

    I hope you get some answers and a new treatment plan. Still..  I know this news is raw right now.

    Sending you healing hugs!

    jan.

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #16
    psuedo progression

    After beginning nivo this spring, my first scans showed enlargement of my mets and multiple new ones. I was encouraged to switch to cabo. But I stayed on nivo and now feel as good as I have in a couple years. I know I have to wait until my next scans but how could I not be improving? I'm walking 18 holes a couple times a week. Easily. Gaining weight. Getting stronger.  I believe the first scans showed a "tumor flare" or "psuedo progression" due to inflammation. I may be proven wrong but I am glad that I didn't give up on the nivo too soon.

  • BellaBinksMom
    BellaBinksMom Member Posts: 78
    edited June 2016 #17
    Fox - that is of interest

    How much spread did you encounter?

    I went from one mediastinal lymph node with low SUV update and 2 small nodes on my lungs to all of my mediastinal lymph nodes, both left and right hylar nodes, a spot in my liver, 2 tumors on my deltoid muscles, a cluster of tumors in the soft tissue of my left flank, and a "probable" met in the brain - had a brain scan last night to verify and determine how wide spread.  All of this growth within 3 months while on Opdivo.  

    Please keep me informed as to how it goes for you while continuing the Opdivo.  I am almost scared to give it another 3 months with so much spread right now

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #18
    Bella,

    my changes would be about the same plus more. I belive many people have switched from nivo due to this "apparent" rapid growth. It is easy to be told we "Failed" nivo and to be encouraged to try what is next. In my case it's been 5 years, I don't want to be on another tki, and I'll take more chances. Most importantly, I am feeling as good as I have in a couple years. I'm looking at my longevity and I'd rather live feeling good than to live a few months longer feeling crappy. It's an easy decision for me. But it is scarey.

  • Allochka
    Allochka Member Posts: 1,074 Member
    #19
    Dreadfylly sorry to hear the

    Dreadfylly sorry to hear the news. But please keep fighting! As more experienced guys have advised, there are many other options, second opinions. Scary time, yes, but not a time to give up!

  • BellaBinksMom
    BellaBinksMom Member Posts: 78
    #20
    foxhd said:

    Bella,

    my changes would be about the same plus more. I belive many people have switched from nivo due to this "apparent" rapid growth. It is easy to be told we "Failed" nivo and to be encouraged to try what is next. In my case it's been 5 years, I don't want to be on another tki, and I'll take more chances. Most importantly, I am feeling as good as I have in a couple years. I'm looking at my longevity and I'd rather live feeling good than to live a few months longer feeling crappy. It's an easy decision for me. But it is scarey.

    Completely understand your mindset.

    I told my husband the same think - quality of life is more important than quantity.  If I can get into a trial, I would like to continue the Opdivo along with another drug.  

  • BellaBinksMom
    BellaBinksMom Member Posts: 78
    #21
    We did get a bit of good news - if there is such a think

    My brain scan shows there is only one 1.5 CM mets to the left temperal lobe of the brain.  There is edema swelling for which I am on steroids until we get in to have steriotactic radiation in the next week.  So, the spread is not as extensiv as first envisioned.

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