Opdivo

[vlad1950]

After VATS surgery 10 month ago with following chemo I am now on Opdivo .. can someone share their experience with that treatment? Thanks, Vladimir

[GMC1]

My husband had proton therapy 6 years ago along with some chemo. The mass was behind the heart and the area changed shape but did not grow for about 4 years. He was in a study so was scanned every 3 months. All of a sudden it started to grow so he was put on Keytruda, even with chemo. Did not work so they put him on monthly treatments of Opdivo. He has been on it for 2 years and doing well. Each month he briefly experiences 3 main side effects. He sleeps a couple of days. He experiences loose stools which only last a day and half as he is treated with prescription of high dose fiber. He gets nauseated and a small white pill, again prescription helps almost immediately. I am very grateful to have these prescriptions as I can say they work like a miracle for him.

The last scan it looked like the mass was reducing. The radiologist said because of the shape it was difficult to measure. But it is not growing.

[vlad1950 in reply to GMC1]

Thank you, your husband is still on Opdivo?

[GMC1 in reply to vlad1950]

Yes, another scan this week.

[ThePurplePlace]

Dear Vladimir,

Opdivo was a life saver for me. I have Stage IV NSCLC and was diagnosed in March 2015. At that time, the Immunotherpay drugs were still only in Clinical Trials, so in my case I started with treatment (Cyberknife for a Brain Met), then Chemo (Carbo and Alimta) and I did well on that for a time, but then had progression the Fall of 2015 while on ALimta Maintenance.

By then, Opdivo had been FDA approved as a second line treatment and I started it in November 2015. It went well and I saw results on my first scans and continued to have results, but also did experience side effects. Mostly mild for a few months (nausea, some GI upset, fatigue, low thyroid, but then came "low grade Pneumonitis:" a known side effect for after my third bout (August of 2016) and because I was then "Stable" my Oncologist decided to stop the Opdivo. She felt it was too high of risk for me to stay on (at that time) and feared that the Pneumonitis would continue to worsen. I had my last infusion on August 31, 2016. We did briefly discuss future options, but I've done so well that I have not needed any further treatment.

Thankfully, I had a remarkable response and I am now in Remission and have not needed any further treatment, which is pretty amazing with Stage IV Metastatic Lung Cancer. It was like a "miracle" treament for me, but I also know many others who were on it back then and stayed on about 2-3 years, and many of us are still stable and doing well. Most of us did ultimately develop some type of side effect, so you do need to be very mindful of that, but as long are you are closely monitored, even side effects can be treated in many cases.

I am very thankful and grateful that I tried it, and have no regrets. In March, I will reach my 5th Cancerversary and I hope every day that I will continue to be in remission.

I wish you the very best and hope you too will have excellent results.

Lisa

[vlad1950 in reply to ThePurplePlace]

Thank you very much, god bless you

[RandyL]

I have been on Opdivo for 3 yrs and 3 months now. I feel great and have had very few side effects. I get muscle pain in my legs from time to time and I take thyroid meds now as a result, but it is worth the trade off as I am still alive and well for a stage 4 NSCLC SURVIVOR!!

[vlad1950 in reply to RandyL]

Glad to hear that you are fine. It looks like I also should take thyroid medicine .. you take them all time you are on Opdivo?

[RandyL in reply to vlad1950]

Yes- the worst side effect I have had is that the Opdivo caused my immune system to go after my thyroid gland and it is basically non existent for me anymore but I will take the pills for the next 10-20 years, not a bad trade off I'd say. Also my tumor has shrunk almost 3/4 of its original size. It is a true miracle drug in my humble opinion.