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Cabo?

foxhd
foxhd Member Posts: 3,181

No one talks about cabo or cometriq. Not recently anyway. It is promising when many other kidney cancer drugs have failed. With it comes the SE's of diarrhea, etc. The bigger question is why would I be asking?

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Comments

  • Footstomper
    Footstomper Member Posts: 1,237
    foroughsh said:

    How are you

    Fox

    I don't know about carbo, but how are you? Does the new drug work for you? Are you happy with the result?

    Thinking of you

    Forough

    Is nivo letting you down?

    Or, did you get sick of the pain?

  • APny
    APny Member Posts: 1,995

    Is nivo letting you down?

    Or, did you get sick of the pain?

    Yes, Fox. Please let us know

    Yes, Fox. Please let us know how you are doing.

  • todd121
    todd121 Member Posts: 1,448
    Cabo

    I was at a kidney cancer support group at Cedars Sinai on Monday. A representative from the pharma company that makes cabo was there visiting us. Cabo and Opdivo were both mentioned. It was a talk on new drugs available. One of the guys there had tried it before. I think he's on Nivo now.

    I remember you were on the trial and they took you off for some reason. It had been working well for you. Are you going to try it again? I don't think it's quite approved yet, but it's supposed to be soon? It's approved for some other cancers, though, so I'm sure it can be used off label.

    Please let us know. We're on pins and needles!

    Todd

  • foxhd
    foxhd Member Posts: 3,181
    todd121 said:

    Cabo

    I was at a kidney cancer support group at Cedars Sinai on Monday. A representative from the pharma company that makes cabo was there visiting us. Cabo and Opdivo were both mentioned. It was a talk on new drugs available. One of the guys there had tried it before. I think he's on Nivo now.

    I remember you were on the trial and they took you off for some reason. It had been working well for you. Are you going to try it again? I don't think it's quite approved yet, but it's supposed to be soon? It's approved for some other cancers, though, so I'm sure it can be used off label.

    Please let us know. We're on pins and needles!

    Todd

    cabo

    I'll see my onc tomorrow to discuss our new plan of care. Soft tissue mets remain stable. Bone mets are not. Spinal mets are affecting senasation and strength in my left arm. I'll also have SBRT scheduled next week. I'll have to look at my scans tomorrow but evidently the nivo did not work as anticipated. Cabozantinib is another TKI plus a couple of other benefits including being effective against bone mets. I'll have to find a patient assistance program as I think this stuff is outside my budget.....and the beat goes on....and the beat goes on....

  • Srashedb
    Srashedb Member Posts: 482
    foxhd said:

    cabo

    I'll see my onc tomorrow to discuss our new plan of care. Soft tissue mets remain stable. Bone mets are not. Spinal mets are affecting senasation and strength in my left arm. I'll also have SBRT scheduled next week. I'll have to look at my scans tomorrow but evidently the nivo did not work as anticipated. Cabozantinib is another TKI plus a couple of other benefits including being effective against bone mets. I'll have to find a patient assistance program as I think this stuff is outside my budget.....and the beat goes on....and the beat goes on....

    Cabo and bone mets

    We were told that there was no effective treatment for bone mets and that radiation (the high beam kind) was he best treatment other than surgery so it is good to know that Cabo is good on bone mets.

    Fox, am I missing something here? The soft tissue mets are stable (Nivo worked) buy the bone mets progressed. Stability is good so why are they switching to another drug? 

    Sarah

  • rja3d
    rja3d Member Posts: 35
    foxhd said:

    cabo

    I'll see my onc tomorrow to discuss our new plan of care. Soft tissue mets remain stable. Bone mets are not. Spinal mets are affecting senasation and strength in my left arm. I'll also have SBRT scheduled next week. I'll have to look at my scans tomorrow but evidently the nivo did not work as anticipated. Cabozantinib is another TKI plus a couple of other benefits including being effective against bone mets. I'll have to find a patient assistance program as I think this stuff is outside my budget.....and the beat goes on....and the beat goes on....

    Wishing You a Good Outcome Tomorrow

    Not much i can offer being a rookie, but I'll be praying!

     

    Jay 

  • Footstomper
    Footstomper Member Posts: 1,237
    foxhd said:

    cabo

    I'll see my onc tomorrow to discuss our new plan of care. Soft tissue mets remain stable. Bone mets are not. Spinal mets are affecting senasation and strength in my left arm. I'll also have SBRT scheduled next week. I'll have to look at my scans tomorrow but evidently the nivo did not work as anticipated. Cabozantinib is another TKI plus a couple of other benefits including being effective against bone mets. I'll have to find a patient assistance program as I think this stuff is outside my budget.....and the beat goes on....and the beat goes on....

    Hang on in there Fox

    Let us know how your meeting goes. I admit I'm terrified about getting optimistic about Nivo. So far I've managed to avoid hope with the other treatments.

    Hesiod had it right in the 7th century BCE: When all the other evils had escaped from Pandora's jar the only one left was optimism. 

  • hardo718
    hardo718 Member Posts: 853

    Hang on in there Fox

    Let us know how your meeting goes. I admit I'm terrified about getting optimistic about Nivo. So far I've managed to avoid hope with the other treatments.

    Hesiod had it right in the 7th century BCE: When all the other evils had escaped from Pandora's jar the only one left was optimism. 

    Praying for you Fox

    Hang in there. Please update us when you can. 

    And thru it all you still manage to keep your sense of humor. You're a great example. I love ya man!!

    Donna~

  • APny
    APny Member Posts: 1,995
    hardo718 said:

    Praying for you Fox

    Hang in there. Please update us when you can. 

    And thru it all you still manage to keep your sense of humor. You're a great example. I love ya man!!

    Donna~

    Thinking of you today. Hope

    Thinking of you today. Hope you get some promising answers from the onc regarding cabo.

  • donna_lee
    donna_lee Member Posts: 1,018 **
    APny said:

    Thinking of you today. Hope

    Thinking of you today. Hope you get some promising answers from the onc regarding cabo.

    Holy Moly and %#^(&))%^$$

    You're supposed to last forever.  What can I say, other than CRUD!!  Hang in there and if anyone can find something that works, you will.

    Luv ya,

    donna_lee

  • todd121
    todd121 Member Posts: 1,448
    foxhd said:

    cabo

    I'll see my onc tomorrow to discuss our new plan of care. Soft tissue mets remain stable. Bone mets are not. Spinal mets are affecting senasation and strength in my left arm. I'll also have SBRT scheduled next week. I'll have to look at my scans tomorrow but evidently the nivo did not work as anticipated. Cabozantinib is another TKI plus a couple of other benefits including being effective against bone mets. I'll have to find a patient assistance program as I think this stuff is outside my budget.....and the beat goes on....and the beat goes on....

    Nivo - Bone Mets Progressed

    Fox,

    There are some studies combining Nivo with a TKI. Are there? I've heard at a few meetings recently that while you can't combine TKI's because the side effects are additive, that the side effect profile of Nivo is different enough that it could be combined. I also heard they were doing some studies like this.

    Since Nivo is working on your soft tissue mets, just wondering if you might be able to add the TKI like Cabo?

    Sending you good thoughts.

    Best wishes,

    Todd

  • APny
    APny Member Posts: 1,995
    todd121 said:

    Nivo - Bone Mets Progressed

    Fox,

    There are some studies combining Nivo with a TKI. Are there? I've heard at a few meetings recently that while you can't combine TKI's because the side effects are additive, that the side effect profile of Nivo is different enough that it could be combined. I also heard they were doing some studies like this.

    Since Nivo is working on your soft tissue mets, just wondering if you might be able to add the TKI like Cabo?

    Sending you good thoughts.

    Best wishes,

    Todd

    While the article doesn’t

    While the article doesn’t address RCC specifically, cabo’s effect on bone mets sounds very promising.

    “Researchers also found that bone metastases either partially or completely disappeared after treatment for 59 out of the 68 patients with bone metastases. Treatment with cabozantinib also greatly reduced bone pain for these patients.”

    http://www.cancer.net/cabozantinib-helps-manage-several-advanced-cancers-and-shrink-bone-metastases

    It would be great if you could have a combination of Nivo (works on soft tissue mets) and cabo for the bone mets. Working for 59 out 68 people is an amazing result. I would imagine it would also work for RCC mets to the bone.

  • Jojo61
    Jojo61 Member Posts: 1,309
    Hoping for the best for you,

    Hoping for the best for you, Foxy!! I wish I could offer you more experience and knowledge. But I can send my good thoughts, vibes and karma your way. Please let us know how it went.

    Big hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181
    Jojo61 said:

    Hoping for the best for you,

    Hoping for the best for you, Foxy!! I wish I could offer you more experience and knowledge. But I can send my good thoughts, vibes and karma your way. Please let us know how it went.

    Big hugs

    Jojo

    Well here's the thing.

    After my 3 months on nivo I've had nothing but new growth in my lungs and my spine. Only a couple belly nodes remained the same. Absolutely stunned. I completely expected excellent results from the nivo. Instead it worked like starter fertilizer. My upper extremity strength and sensation is diminishing again. We discussed multiple options available. And it was up to me as to the next step. So I'll get more radiation and begin cabozantinib. My tumors just aren't growing in places that we can do much about. Surgery is out of the question. So despite a reputation for severe SE's, cabo is my choice. Maybe this time I'll get lucky again.

  • Jojo61
    Jojo61 Member Posts: 1,309
    Kidney cancer is such a

    Kidney cancer is such a complex and multi-faceted disease. Why does one medication work for some, but not for others? It is a frustrating puzzle. Praying that your latest choice is the answer you have been searching for, Foxy. Loving your incredible attitude.

    Big hugs

    Jojo 

  • foroughsh
    foroughsh Member Posts: 779
    foxhd said:

    Well here's the thing.

    After my 3 months on nivo I've had nothing but new growth in my lungs and my spine. Only a couple belly nodes remained the same. Absolutely stunned. I completely expected excellent results from the nivo. Instead it worked like starter fertilizer. My upper extremity strength and sensation is diminishing again. We discussed multiple options available. And it was up to me as to the next step. So I'll get more radiation and begin cabozantinib. My tumors just aren't growing in places that we can do much about. Surgery is out of the question. So despite a reputation for severe SE's, cabo is my choice. Maybe this time I'll get lucky again.

    Thinking of you and sending

    Thinking of you and sending you my best wishes. You've done a miracle before and it's not odd to expect it again

    Keep in touch

    Forough

  • Dave418
    Dave418 Member Posts: 95
    So sorry for you, hope Cabo

    So sorry for you, hope Cabo will be the right one and you can manage sides effects. 

    ... ... 

    Take care

    Dave

  • sblairc
    sblairc Member Posts: 585
    We're not all going to Mexico? Well CRAP.

    Was hoping when I saw this subject you were going to suggest we all say "F THIS" stupid disease and head to Mexico. 
    Cabozaninitunb is sounding promising. Then maybe some fun in the sun. . . 

  • APny
    APny Member Posts: 1,995
    sblairc said:

    We're not all going to Mexico? Well CRAP.

    Was hoping when I saw this subject you were going to suggest we all say "F THIS" stupid disease and head to Mexico. 
    Cabozaninitunb is sounding promising. Then maybe some fun in the sun. . . 

    That really sucks about the

    That really sucks about the Nivo but hopefully the Cabo will do it. And perhaps for you the side effects won't be bad for you. That also varies so much between people. I can imagine how disappointing the news were but I guess Nivo wasn't the right drug for you. Hugs xo 

  • Srashedb
    Srashedb Member Posts: 482
    foxhd said:

    Well here's the thing.

    After my 3 months on nivo I've had nothing but new growth in my lungs and my spine. Only a couple belly nodes remained the same. Absolutely stunned. I completely expected excellent results from the nivo. Instead it worked like starter fertilizer. My upper extremity strength and sensation is diminishing again. We discussed multiple options available. And it was up to me as to the next step. So I'll get more radiation and begin cabozantinib. My tumors just aren't growing in places that we can do much about. Surgery is out of the question. So despite a reputation for severe SE's, cabo is my choice. Maybe this time I'll get lucky again.

    Nivo

    Is there any chance that the growths are pseudo progression? From the folks on Smart Patients, I have read that Nivo can do this sometiimes.

    Sarah