Discussion Board Forums Chemotherapy & More Keytruda or Opdivo (pembrolizumab, nivolumab, MK3475) Patients?

Viewing 15 posts - 1 through 15 (of 23 total)
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  • #91521
    positivity
    Participant

    Alikemal, There needs to be more studies and clinical trials for immunotherapy drugs for CC. It is limited at this time. Hopefully we can brings this forward through sites like this foundation.

    #91520
    mattreidy
    Participant

    See http://www.merckhelps.com/

    Alikemal wrote:
    why does merch give the drug at no charge ?
    #91519
    alikemal
    Participant

    why does merch give the drug at no charge ?

    #91518
    mattreidy
    Participant

    Generally, Merck gives the drug to those in the US who ask for it at no charge. Nobody really knows how long is long enough – yet. I plan to be on it for about 18 months.

    Daisy wrote:
    If patients are receiving this an off label use? What is everyone paying for this drug? Do the pharmaceutical companies just gives to the patients or do the patients pay out of pocket? Also how long does one need to stay on this?
    #91517
    daisy
    Participant

    If patients are receiving this an off label use? What is everyone paying for this drug? Do the pharmaceutical companies just gives to the patients or do the patients pay out of pocket? Also how long does one need to stay on this?

    #91516
    daisy
    Participant

    If patients are receiving this an off label use? What is everyone paying for this drug? Do the pharmaceutical companies just gives to the patients or do the patients pay out of pocket? Also how long does one need to stay on this?

    #91515
    mattreidy
    Participant

    SIde effects are rare but can be serious. Generally autoimmune problems. Minor issues can be resolved with steroids but serious issues will require stopping treatment.

    I’ve experienced some fatigue, but nothing serious and certainly nothing at all like chemo or radiation.

    Take a look here for more info: https://www.keytruda.com/non-small-cell-lung-cancer/keytruda-side-effects/

    Daisy wrote:
    Matt,

    What are the side effects of Keytruda if any? Any how long will you be on the treatment!

    #91514
    daisy
    Participant

    Matt,

    What are the side effects of Keytruda if any? Any how long will you be on the treatment!

    #91513
    mattreidy
    Participant

    I take Keytruda – it’s a 30 minute infusion, once every three weeks. I was Stage IV Perihilar CC when I started and have been NED for over a year now.

    #91512
    alikemal
    Participant

    how is keytruda or Opdivo given ?
    how often is keytruda or Opdivo given ?
    Does Anyone Benefit from keytruda or Opdivo ?

    What other Immunotherapy drugs can be used for Intrahepatic CCA ?

    All the best

    #91511
    marions
    Moderator

    JES15228….not everyone responds favorably to an immune checkpoint inhibitor such as Opdivo. There still is much to learn about the body’s immune response and that is the focus of today’s research.
    I wish for your sister to do well with irinotican. It’s been used as single agent, but most often we see it in a combination with other drugs. How is she fairing?

    Hugs,
    Marion

    #91510
    lainy
    Participant

    Dear Julia, I am so sorry to read about your dear Sister. I happened to get up during the night and saw this and sent the “List” right out to you. We are all here for you and I hope the end of her journey goes peacefully. We are here if you need us.

    #91509
    jes15228
    Member

    My sister was given Opdivo when her tumors continued to grow on Oxaplatin & 5FU. It was off label and the company gave it at no charge. She had three treatments of it but the tumor continued to grow. Initially we thought that it would take 2-3 months for it to start working but a scan was done after the third infusion and the tumors were still growing. Apparently they can tell if the growth is being affected by the drug. It was stopped and she is now on irinotican.

    #91500
    lainy
    Participant

    Dear Lemen, thank you for joining the best place to be for CC support as we do have quite a remarkable family. We will be looking forward to your Scan results and hope for good things from Keytruda. Below is a site you may find helpful:

    http://cholangiocarcinoma.org/newly-dx/

    When you have a chance could you please introduce yourself on our INTRODUCTION site? I am afraid you might get lost on this thread and it would be nice for others to meet you. Looking forward to reading more from you and best of luck.

    #91501
    gildus
    Member

    I started Keytruda in October 2016 as part of a clinical trial at UCSF. The trial combined the Keytruda with 2 cycles of 2 weeks of GM-CSF. I won’t know how well it’s working until my first CT scan at the end of December. As for my CA19-9 levels, they’ve always been within the normal range (like all of my other blood tests). I have seen since my baseline CA19-9 and my most recent test that it did drop from 30 to 24.

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