Best therapy options for mets?

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msorbel
msorbel Member Posts: 1

My step-father was diagnosed with renal cancer with mets to the bone, lungs, and regional lymph nodes a week ago. He had a radical nephrectomy three days ago to remove a 7cm tumor along with his entire right kidney. We do not have the pathology report back yet (we expect it hopefully by next Tuesday) because we are in Northern Idaho in a small hospital.

I live in the Portland, Oregon area and after a few days of solid research, I began feeling that the prognosis was not good with traditional therapies, and especially in an area lacking top-notch medical care. I have reached out to OHSU's Knight Cancer Institute where the area's leading kidney cancer oncologist also leads clinical trials on novel immunotherapy options, specifically Pembro. 

Yesterday, my mother and step-father met with the local oncologist and he indicated a number of interesting things that are making me wonder what the best approach is. He said that although the cancer has metastitisized, he does not consider it advanced and believes it to have recently spread. He believes my step-father has a strong chance for complete recovery given the newest modeications now available. He also indicated that Pembro is a really remarkable drug, but that we don't necessarily need a clinical trial to use it for RCC. He indicated he could get Pembro (Keytruda) directly from the manufacturer. 

I would like the persepective and advice from the real life experts on this site for the following questions:

  • Has anyone had experience with an oncologist prescribing a therapy off-label and did this present difficulties with insurance coverage for the prescription?
  • Has anyone been prescribed combination therapy using a signal transduction inhibitor and a monoclonal antibody like Pembro?
  • Is it advisable to bring my step-father out to Portland, and if so should we plan to relocate them temporarily there with me (I have room) or is it realistic to think they may just need to come out for intermittent visits to receive therapy? We are a six hour drive or a one hour flight apart. 
  • With all the new immunotherapy options out there, I'd like to know which types (Cytokines, monoclonal antibodies, etc.) people are seeing positive response from, as well as if anyone is using a combination therapy and if it is well tolerated. I understand we cannot be giving medical advice or prescribing therapies, but understanding what is currently considered cutting edge and what is old news would help. My eyes are beginning to cross from reading all of the preclinical studies and trial results!

Thank you in advance for any advice you can give us. I've been greatly moved after reading through so many of your threads and have found the positive support system here to be the most helpful resource I have found to date. Wishing you all the very best!

Comments

  • Abunai
    Abunai Member Posts: 173 Member
    edited May 2017 #2
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    msorbel

    I'm not an expert, even in my own medical case.

    I haven't heard much about Pembro, especially as it applies to treatment of RCC. Sounds intriguing, though.

    I'm being treated, in a clinical trial, with Opdivo  (Nivolumab) and a study drug currently called CB-839. The Nivo requires infusions every two weeks and I need to travel 1.5 hours each way. I can't imagine a six hour trip that often, if that is what your step-father would be facing.

    It sounds like you've really done your homework, medicinally speaking. The only advice I can really offer is that bone Mets can be very painful and you should take your step-father's comfort into consideration as far as traveling for treatment goes. Is he also getting Zometa infusions? He should be close to where he can get those, too.

    Best of luck!

  • apassant
    apassant Member Posts: 3
    edited May 2017 #3
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    I'm 36, been diagnosed in

    I'm 36, been diagnosed in January with mRCC (lung mets, 11cm tumor), and have been treated under a combination of Pembrolizumab and Axitinib since March (clinical trial Keynote 426 - full story at http://mycancernotes.wordpress.com).

    The Pembro injection is every 3 weeks for 30min (+ the time for blood tests before, etc.), and Axitinib twice a day at home. Nothing too disturbing.

    My first scan is this Friday so I can't comment yet about the result, but sides effects are manageable. Mostly fatigue (happened twice, quite strong, and lasted a few days before recovery), severe rashes (treated with cream and antihistamine), and sore mouth, ulcers, etc. making eating / drinking tough (currently treated with gel and mouth wash, getting better after about a week).

    Let me know if you want more details about the trial - here are also some results from Phase 1 http://www.businesswire.com/news/home/20161009005032/en/Pfizer-Presents-Promising-Immunotherapy-Combination-Data-INLYTA®