• Immunotherapy

    Asked by LiveWithCancer on Monday, September 25, 2017


    Everyone who has been on WhatNext for any length of time probably knows that immunotherapy has kept me alive for over 4 years. I am like an evangelist for it.

    For the first time ever, I will have the opportunity next week to talk to researchers who are in the process of developing immunotherapy for cancer (not just lung cancer). The researchers work for a pharmaceutical company that has not yet marketed an immunotherapy.

    The purpose of this meeting is to give the patient perspective on immunotherapy.

    If you were able to talk to the researchers what would you tell them?
    Do you have drawbacks that you would like to see addressed?
    What side effects have you experienced?
    If you could tell the audience anything at all as a patient that you hope they keep in mind when developing a new drug what would it be?

    I have had very few side effects from my treatments, but I am well aware that i am one of the lucky few. It would be great if I could let the researchers know about some less tha

    9 Answers from the Community

    9 answers
    • LiveWithCancer's Avatar

      Than pleasant side effects.

      10 months ago
    • SandiA's Avatar

      I had great results and would do it all over again but I ended up with rhematodid arthritis. I haven't heard about too many people like me, but wonder are there many of us out there and have any studies been done about it . Thanks!

      10 months ago
    • GregP_WN's Avatar

      I think any of us that have the opportunity to participate in these studies should. It's literally a part of creating the next generation of treatment protocols and drugs. You are a part of cancer treatment history!

      10 months ago
    • Dianem's Avatar

      How are you doing. As you know I too have had good results, but like sandiA I have some kind of arthritis or neuropathy, the Drs are thinking it comes from the immunotherapy, but are not certain. That would be something to look into.. What to tell the audience. Always hope, never give up. Keep strong,God bless.

      10 months ago
    • LiveWithCancer's Avatar

      Thank you all for your feedback!!! I have always wanted to go to BMS and stand before their researchers and say THIS is the result of what you do every day. I have never had the opportunity.

      I know I had NIH researchers come up to me in tears back in 2015 when I had the opportunity to present to some of them. I think it helps to see that what they're doing has consequences (good and bad).

      From what I learned yesterday, this company is going to be seeking patient perspectives all along the way while developing their drugs and treatment protocols.

      I go next week. By that time, I should have had my 99th infusion of Opdivo (my insurance company gets to start picking up the tab for it ... won't they be pleased??!!)

      10 months ago
    • Cindy0121's Avatar

      Figure out how to help patients recognize and respond to what could be serious adverse events. There will always be those risks, but I think they're could be earlier intervention with some of these horrible complications that land people in the ER, ICU, surgery. I wish they would tell patients more, disclose more of their data about who responds, how long, steroids or no steroids?, stop treatment if doing well or continue? We want to be heard, but all they do is use us to get information. They don't answer OUR questions or share what they certainly have learned since clinical trial data. We're their "Phase IV" trial. So,what are all the best practices that most researchers agree on so far?

      10 months ago
    • DennisOlivier's Avatar

      Oncologists are a strange breed; some of the older ones do not believe in immunotherapy. Other younger Dr.s say it is good. Wife is scheduled for immunotherapy after a three-month regimen of chemo. Wife is doing better after reducing water intake; was drinking, by Dr orders 3 quarts of water a day; the day before yesterday no water other than enough to swallow prescription pills. Salt content in the body was low. Sometimes you wish they knew what they were doing a bit quicker.

      10 months ago
    • Skyemberr's Avatar

      Its tell them that we really need an immunotherapy for people with KRAS positive colorectal cancer. It tends to hit the lungs first instead of the liver and FOLFIRI is not very effective at treating it. We have FOLFOX and radiation but that is not enough. We don't seem to have a third line of defense yet.

      10 months ago
    • LiveWithCancer's Avatar

      Skyemberr, one of the people coming to the meeting is a Stage 4 colorectal patient. He just started Keytruda.

      KRAS, at least for lung cancer, is a very difficult mutation to treat. I didn't realize that it wasn't exclusive to lung cancer.

      A friend of mine has KRAS. Docetaxel has helped keep her tumors at bay for a good long while. Her cancer is lung cancer, but same mutation.

      10 months ago

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