I'm new here.
diagnosed 5/15 nsclc adenocarcinoma had 6 treatments with carboplatin/alimta went 6mo stable then 6mo on opdivo felt great however had progression including a small met to brain which I had zapped in Nov 16. Looking forward to a clinical trial using Opdivo (nivolomaub) and FPA008. Anybody in this trial?
Hi mehilly1 I have stage 4 nsccarcinoma bith lungs. Had the same treatment. My tumors have shrunk. I have been on Opdivo since Jan 2016. Feel great. Starting my 4th year of treatment. Hang in there n stay optimistic. You still have a lot of living to do just like me
Bonnie
Hi MeHilly1 I'm also am on opdivo 15 months can u tell me what it means if last 4 scan showed no growth or movement does this mean its working or will it start growing again
Hi it's me Bonnie. My scans also show no more growth and fir that I thank God. There is no guarantee that they won't start to grow again but mine have shrunk considerably so I put one foot in front of the other n enjoy everyday as it comes. Remember there are no guarantees in life so just keep living n getting your treatment. I actually lost all my hair n it started to grow back about 2 months ago to the point I needed a haircut. Haha hang in there sweetie we still have a lot of living to do. God Bless you
Bonnie
That is considered stable and that is GOOD!! 
Can't say it won't start growing again only time will tell. Opdivo didn't work for me but I felt really good while on it that's why I decided on this trial with Opdivo and FPA008 (cabiralizumab) the hope is the combo will improve the immune systems ability to kill the cancer. It appears using dual therapy is stronger than single agent. I will keep posting updates. I'm actually looking forward to my next CT scan but not sure when that will be.
i started on Opdivo had my second treatment 3-6-2017..i have melanoma in my lungs ..I was told its the latest immunotherapy and I am taking their word for it...hoping for the best ...good luck to you
Hi me hilly and Bonnie... similar starts to our stories. Starting April 2015, 6 carboplatin/Alimta and now on Alimta only every 3-4 weeks. Cancer stable (except brain lesions were discovered and removed and treated). When I asked about switching to opdivo, I was encouraged to wait. My pdl1 expression is "moderate." My oncologist is conservative, says that what we are doing is working and we don't mess with that. How did your docs decide to switch you to the immunotherapy?
After all the same treatment as you my Dr said I was a greasy candidate for Opdivo they had shrunk a lot n it was time to maintain n get more shrinkage. Its working keep going life is sure worth the struggle
I went on opdivo after I showed progression. After I showed progression while on opdivo I elected this trial because I felt great while on opdivo, so this trial is opdivo and another agent that will hopefully make the opdivo more effective. I really did not want to do chemo again.
Started the clinical trial, had my first infusions on Tuesday, blood work Tue., Wed., and Fri. go back next Tue for more blood work and physical, after that should just be every 2 weeks for infusions. Side effects have been minimal, some nausea on day 2, shakiness and mild headache on day 3 and 4 all very minor so I'm a happy camper!! I should mention this trial is for solid tumors, many types of cancer not just lung.
Had my 2nd treatment Tuesday. So far I've only had mild side effects so I 'm pretty happy having some pain in lymph nodes and one of the largest feels like it may be getting smaller also have puffy eyes which is a common side effect. 3rd treatment in 2 weeks.
MeHilly1,
Thanks for the update, I have been wondering. Sounds like things are going well, so very happy to hear that!
Had my 3rd treatment Tuesday, no new side effects . I should have my 1st CT scan after my 4th treatment and am actually looking forward to it!!
Keep up the great attitude!
4th treatment yesterday have been having more headaches which maybe from the swelling around the eyes, ibuprofen helps and doc doesn't seem worried at this time, said I might skip a dose of the study drug if eyes get much worse, they only open about half way. Other than that side effects haven't been bad. CT in two weeks, looking forward to it but still some scanxiety! Having a MRI on Wed that same week to check on brain met that I had zapped in Nov. so it will be a busy week.
MeHilly1,
Ouch, the swollen eyes sound uncomfortable...glad to hear ibuprofen relieves it some, sure hope it stops soon. CT scans, MRIs, you folks are made of sturdy stuff! Good luck Wednesday, and I hope two weeks pass without more anxiety! Please let us know how things go!
so I had my scans this week, the MRI of the brain was good, the cat scan was not all kinds of new stuff going on so I am out of that trial and trying to get into another in Madison that is using Ipilimumab and MGA271. Waiting for the drugs to clear and onward I go
MeHilly1, I am so sorry to hear about the scan. I hope you get into the trial in Madison and things go better this time. Keep up the fight! Please let us know what happens. Thank you for updating us now...it was great to hear your MRI was good! Lets hope the future news follows that line of thought!
To be, or not to be...NED. That is the question -William Shakespeare and me 😂
FDA Approves Tecentriq for First-Line Treatment of Metastatic NSCLC with High PD-L1 Expression
Immunotherapy Stage IVFirst Targeted Adjuvant Therapy for EGFR Non Small Cell Lung Cancer (stage IB-IIIA)
Eleven years. Who’d have thought it possible. 
