Clinical Study or Not After treatments

Hello, my name is Ann. I was diagnosed with non small cell lung cancer last spring , 2016. I had lung surgery, lower left lobe removed along with chest lymph nodes. I have had chemo. and just finished radiation treatments. My recheck CT scan will be on Jan. 25, 2017. I will also meet with my two oncologists. My tumor that was removed allows me to be in a clinical study using optivo for early lung cancer through the company Alchemist. Not sure if I should proceed. Is this like chemo? Side effects? I do not have to make a decision until April, 2017. Thank you for any advise you may have.

11 Replies

oldestnewest
  • Ann,

    Welcome. I am sure you will hear from many of our community members soon. I will leave it to them to give you their wonderful insights.

    In the meantime, you might want to take a quick look at the information on immunotherapy (Opdivo is immunotherapy): freetobreathe.org/lung-canc...

    If you explore the freetobreathe.org site more, you will also find information on clinical trials.

    I am sorry that you are facing these challenges, but I am very glad that you are meeting with two oncologists - it sounds like you have a good medical team on your side!

    Warmest wishes,

    Peggy

  • I have stage 1V lung cancer nsclc. I was in a clinical trial from April 2015 - the end of August 2015. It was an immunotherapy and chemotherapy. Docetaxel was the chemo, R171 was the immunotherapy. They took me out because I have a pelvic tumor and it was getting bigger. It was shrinking the lung tumors and some lymph tumors. I also took Opdivo and the only side effect was being tired. I'm on Keytruda now it is like Opdivo. Hope this helps, I'm praying for you. Nancee

  • I'm glad you're doing well. I don't know anything about immunotherapy drugs other than I've been told it is given by intravenous. I originally thought it was a pill form and it may be.

    I'll be interested in hearing from other people using immunotherapy drugs.

  • Ann,

    Opdivo (Nivolumab) is an Immunotherapy medication that is infused like chemo, but it not classified as a Chemo Drug. It's ones of the newest types of drugs used to treat cancer and the basic idea is that it will "boost" your Immune System to allow it to learn how to fight off the cancer cells. Here is some clinical data on how it works -- opdivo.bmscustomerconnect.c...

    Opdivo is now FDA Approved as a second line treatment for NSCLC for those who has been previously treated with Platinum Based Chemo. It rec'd approval back on the Fall of 2015. I'm not sure WHY you would need to be part of a trial, if you have already had chemo? Although there are trials ongoing where they are using Opdivo in combination with another treatment? (Another Chemo or even another Immunotherapy Drug) -- maybe that is what they are thinking of in your case.

    I have been on Opdivo for over a year and despite some issues with side effects (there are many) you can read about them all here - opdivo.bmscustomerconnect.c... - it has worked very well for me in shrinking my tumor. I am currently stable and on a treatment break, due to "low grade pneumonitis), one of the known side effects -- thankfully it's been mild for me and has to need any treatment -- sometimes patients need to stop Nivo permantently if the Pneumonitis is severe. But as I said, depsite this, I have been very pleased with Opdivo and do HOPE I can eventually resume treatments with it. I had been on chemo first (Carbo and Pemetrexed), but it stopped working the my Lung tumor became quite agressive -- Opdivo has worked so well and my tumor is now very tiny (14mm) and has been stable for many months, even with the treatment break.

    Overall, most people do very well on this treament with far less side effects than chemo. I found the worst side effect was fatigue, some nausea (but easily controlled), and a general feeling of having the flu (without a fever/cough). It's typically tolerated well and they are many who have been it since before it was FDA approved.

    I hope it will work well for you too -- Good Luck!!

    Lisa

  • I have had surgery, chemo and radiation. Tumor has been removed. I think the study is to see how it works on earlier stages.

  • My tumor was removed. Nothing there now. Trial for earlier stages I think.

  • Oh that is very interesting -- I had no idea they were using Opdivo in "that way" must be something new -- and new things are always promising and hopefully will be good for others in the future! Happy you are Cancer Free, that's fantastic! My tumor is not operable....

    Nonetheless -- I think Opdivo (and Immunotherapy) is amazing and seems to be more and more where the future of treating Lung Cancer seems to be going -- Good Luck!!

  • hope it works for you opdivo did not work for me but had real mild side effects , i have the same lung cancer but stage 4 so can't have surgery or laser and back on chemo now if i were in your position i would try the opdivo before chemo

  • Sounds like this maybe the trial you are thinking about -- cancer.gov/types/lung/resea...

  • Opdivo is pretty much standard of care for second line treatment in stage 4 cancer that was previously treated with a platinum chemo. The head of thoracic oncology at U Mich told us that its his choice for treating his patients that way.

    Unlike targeted therapies, immunotherapies may have applications in earlier stages of lung cancer. My knowledge is not sophisticated enough to be able to tell you why.

    If you know the name of the trial it might give us insight as to why this might be something to explore. I'll see what I can find using Alchemist as a key word.

  • Hi, I was diagnosed with stage 4 non small lung cancer in 2006, I was told i had 2 years. They then offered me to be in a clinical trial phase 2--drug was Tarceva. Thank God I am now an eleven year survivor and actually closed the study. It is such a hard choice to step into the unknown clinical trial phase. Hindsight I am sure glad I did. Good luck! Tarceva is now on the market and used many time as first line of defense.

You may also like...