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Opdiva after four treatments

mrou50
mrou50 Member Posts: 389

So I just had my fourth treatment of Opdiva, I was hoping for good things but I won't have a scan until next week.  However I did have a broncoscopy on Friday, my ONC wanted to see where the bleeding in lungs was coming from.  The Pulmonary doctor found many new tumors that were not on his first report from my ONC, he took a biopsy of one, and surprise it was metatasized RCC, I could have told him that but what the heck.  So on Monday when I met with my ONC's PA she said that the cancer is appears to be getting more aggressive we are going to wait until next week to see if there is any changes since being on Opdiva but she said there should not be new mets growing and they found many on the bronc.  I asked the inevitable question is my time running out, Fox thinking of you here and the many times you were told this was it, she said that she and my ONC feel that if I stopped medication I would be be gone in as little as three months.  She said that the essentially the drugs are keeping me alive.  I didn't know what to think at that point, then I realized, I am still in treatment and I have a few more options if or when Opdiva stops working.  

On a side note for those of you using Opdiva the first couple of treatments went well for me, but the last two were tough, two weeks ago when I was treated my stomach got messed up and I spent two days in the bathroom, and I had a 102 degree fever, they wanted my wife to take me to Portland to the hospital but it is four hour drive so I asked if I could wait it out, I drank lots of fluids and took tylenol and the fever broke.  Just something to watch out for Opdiva users.  

Mark

Comments

  • Jojo61
    Jojo61 Member Posts: 1,309
    Hi Mark,Thanks for posting.

    Hi Mark,

    Thanks for posting. I hope that there are good test results for you....and as you said, there are a couple other options still out there for you. I am keeping you in my thoughts and prayers.

    Hugs

    Jojo

  • PK_Chicago
    PK_Chicago Member Posts: 58
    Opdivo -

    Mark - 

    Did your Onc feel the Opdivo treatment caused the lung bleeding? I am going for dose 9 on Monday and the questions I get in my pre-infusion doctor visit are always around breathing and lungs. How was the bleeding found? Sorry for so many questions - but Opdivo being so new for rcc so any info you could share would be awesome!

    PK

  • Eliezer2
    Eliezer2 Member Posts: 85
    opdiva and lung mets

    This past summer i began opdiva, at first with yervoy. in the summer my lungs were barely functioning, could hardly walk, was on oxygen tubes, could not even sit up for long.

    now, 6-9 months later (9 after starting opdiva) my lungs have almost completely cleared out of the disease, i am walking miles and climbing hills and stairs.. 

     

    ask about adding yervoy to the regimen

  • hardo718
    hardo718 Member Posts: 853
    Eliezer2 said:

    opdiva and lung mets

    This past summer i began opdiva, at first with yervoy. in the summer my lungs were barely functioning, could hardly walk, was on oxygen tubes, could not even sit up for long.

    now, 6-9 months later (9 after starting opdiva) my lungs have almost completely cleared out of the disease, i am walking miles and climbing hills and stairs.. 

     

    ask about adding yervoy to the regimen

    Sorry to hear that Mark

    I'll be keeping you in my prayers that things starting turning around for you. 

    As difficult as it is, try to find some positives about all of this.  I can't imagine how hard all of this is for you.  Cry

    Donna~

  • mrou50
    mrou50 Member Posts: 389

    Opdivo -

    Mark - 

    Did your Onc feel the Opdivo treatment caused the lung bleeding? I am going for dose 9 on Monday and the questions I get in my pre-infusion doctor visit are always around breathing and lungs. How was the bleeding found? Sorry for so many questions - but Opdivo being so new for rcc so any info you could share would be awesome!

    PK

    PK

    I have been coughing up copious amounts of blood for over a year, long before I started Opdiva, when I was NED with Votrient for three months it stopped. Hopefully Opdiva puts me in NED again so I can breath clearly without coughing and hacking up blood.  I am hearing nothing but good things about Opdiva so I would not worry if I were you.

    Mark

  • mrou50
    mrou50 Member Posts: 389
    Eliezer2 said:

    opdiva and lung mets

    This past summer i began opdiva, at first with yervoy. in the summer my lungs were barely functioning, could hardly walk, was on oxygen tubes, could not even sit up for long.

    now, 6-9 months later (9 after starting opdiva) my lungs have almost completely cleared out of the disease, i am walking miles and climbing hills and stairs.. 

     

    ask about adding yervoy to the regimen

    Elizezer

    What is Yervoy?  I am curious, I would love to be able to breath normal for a while.

     

    Mark

  • APny
    APny Member Posts: 1,995
    mrou50 said:

    Elizezer

    What is Yervoy?  I am curious, I would love to be able to breath normal for a while.

     

    Mark

    Keeping you in my thoughts,

    Keeping you in my thoughts, Mark. Hoping the scans next week will bring some good news and that they can find a way to deal with the new mets. Maybe the drug just needs more time to do its job.

  • Eliezer2
    Eliezer2 Member Posts: 85
    yervoy

    is a drug that seems to boost opdiva when they are taken together.  pair widely used in melanoma, but growing number of cases used for rcc.  yervoy has some risks and side effects opdiva does not, but for many patients it makes the opdiva treatment very effective. 

  • grafer
    grafer Member Posts: 20
    mrou50 said:

    Elizezer

    What is Yervoy?  I am curious, I would love to be able to breath normal for a while.

     

    Mark

    Yervoy

    I dont know that Yervoy -(Ipilimumab) is used as a stand alone treatment for RCC.  Normally used in conjunction with Opdivo (Nivolumab)  -As per Checkmate 214 Trial - for the first 12 weeks only, then it is the Nivo only.  Feedback (rightly or wrongly) suggests that initial results are better whilst Ipilimumab is part of the combination. However, I believe there are much greater side effects with this drug which is probably why it is stopped after 12 weeks.

    Nivolumab has been great for some people with long term stability / shrinkage.  All the best.

    Graham

  • njkate07
    njkate07 Member Posts: 19
    Question....question

    So now I'm curious. Husband already has lung mets from kidney cancer. He was on Votrient but side effects were gruesome so they stopped that and put him on Opdivo. He so far has had 4 treatments and is having breathing issues, his left  plueral lining in lungs keeps filling with fluid and within two weeks they drained 5 liters of bloody looking fluid. Cystology comes back non malignant but now wondering if the Opdivo may be the cause of this.

    My next step if they fill again is to ask about a Pleurodesis.....

  • Manufred
    Manufred Member Posts: 241
    I have been following the

    I have been following the comments about Opdiva, and Checkmate 214 in particular as I have been on that trial for almost 2 years now.  However in recent months the comments appear to be drying up.  My own results have been excellent and side effects very manageable.  I am eager to hear from other long-term triallists, and from anyone who has stopped taking the Nivo after apparent total remission.