Optivo

[Robnrpbay]

I have joined Health Unlocked to gain more info for my wife who has stage 4 adenocarcinoma. She has rececived 5 chemo treatments with abraxane and carboplatin to no avail. Her doctor recently switched her to a new drug called Opdivo. has anyone had any experience with this drug ?

[trillatrill]

yes im takin that chemo now anything u would like to know im stage 4

[Denzie Moderator Volunteer]

While I am not personally on it I have been on line friends with a woman who was in the very first clinical trial. That was 6 or so years ago and she's doing well today.

[Jessi08 Volunteer]

Yes by father is actually in the opposite track as your wife. He was on Opdivo and now is back on chemo abraxane. Opdivo is immunotherapy which is different than chemo therapy.

Opdivo has had great outcomes for many. Although it wasn't successful for my dad he felt much better than he did on chemo. Has your wife tested positive for any genetic markers? Typically immunotherapy seems to be used when they can target something specific.

[Enjoyabull in reply to Jessi08]

How many treatments did your dad get before they took him off of it?

[Jessi08 Volunteer in reply to Enjoyabull]

My dad received the treatment for several months. With immunotherapy the drug uses your immune system to attack the cancer from the inside. So on the first scan after treatment you might see a "pseudoprogression" where tumors look bigger in size, however, that is normal so my dad kept going with treatment to determine if it was pseudo or not. They never really determined for sure but they did find a new bone lesion so they couldn't keep him on the Opdivo since it wasn't preventing spread of the disease.

If it wasn't for the amazing people at Free To Breathe I wouldn't have the information to be able to ask my dads doctors the right questions and fully understand what was going on.

You are in a great place and I would recommend contacting the help line at Free To Breathe. MFH_Advocate FtB_Peggy have been amazing help to me. Caring and concerned and I don't even know them personally. Use the resources, they are out there for you 💕 Please keep us updated and prayers for your wife

[Robnrpbay in reply to Jessi08]

Thank you form your input and information Jesse08. I really appreciate it

[Robnrpbay in reply to Jessi08]

I'm not sure about the markers, She previously was treated with abraxane and carboplatin but they did not work.

[Enjoyabull]

Optivo didnt work for me but I see a lot of my chemo friends that are doing well on it.

[scifiknitter Blogger]

Sending best hopes that Opdivo works well for your wife!

In reading research papers and other patients' experiences with this drug, my main thought is that you and your wife should monitor how she feels very closely, and call your doctor right away if anything seems to be amiss. Possible side effects include pneumonitis, which can be very serious.

Anita

[Robnrpbay in reply to scifiknitter]

yes, she did seem to have a reaction similar to pneumonitis but the doctor said it was not caused by the opdivo. she is scheduled for her third opdivo treatment next Thursday. She had blood work done today and the doctor will check it out and will examine her prior to the opdivo infusion. She also had five radiation treatments ( 5 days in a row last week) and is very tired and cannot walk very far without getting very winded.

[Robnrpbay in reply to scifiknitter]

Thank You Anita

[FtB_Peggy]

Robnrpbay,

Welcome - it is great to have you with us. As you can see, people here are anxious to help, and very understanding. Keep us updated, and don't be hesitant to ask questions or share your concerns. You are not alone now.

[Robnrpbay in reply to FtB_Peggy]

Thank You very much Peggy. I'm very glad that I found this group.

[Robnrpbay]

Thank you Mesa 1219

[GainesH]

Didn't work for my husband. 1st treatment put him in hospital. Dr's said it didn't even phase it.

[Robnrpbay in reply to GainesH]

Thank you GainesH. The 2nd treatment put my wife in the hospital also. The doctor says, however that it was not caused by the Opdivo. Now she is possibly due for another Opdivo treatment tomorrow.

[FtB_Peggy]

Good luck to both of you!

[Robnrpbay in reply to FtB_Peggy]

Thank you Peggy

[Nancee54]

I'm stage 4 I took Opdivo 2 different times it didn't work for me.

[Robnrpbay in reply to Nancee54]

Thank you for the input.My wife is scheduled for Opdivo # 3 next Thursday. Nancee 54 what is your game plan now ?

[Nancee54 in reply to Robnrpbay]

I'm taking Keytruda it's a sister drug to Opdivo. I will have a pet scan Tuesday to see if it's working.

[Robnrpbay]

I have heard about Keytruda. I wish you the best of success with it. Please keep me posted if possible. Thank you Nancee54

[Robnrpbay]

It is with great sadness that I must tell the group that my wife passed away on January 2 2017. She had pneumonia and kidney failure on top of the Cancer. All of you on this website PLEASE don't give up hope. every case is different and everyone's response to the various treatments is different.My wife was physically unable to continue.God Bless You All and DON'T GIVE UP.

[Johnsheek in reply to Robnrpbay]

I am so sorry for your loss.

[Robnrpbay in reply to Johnsheek]

Thank You John !

[FtB_Peggy]

Robnrpbay,

Please accept my sincere condolences. It is so very hard to lose the one we love, I am just so sorry you are going through this. Please take comfort in knowing that you were there for her.

And please make sure you have the love and support you need in the months ahead, don't be shy about reaching out! And feel free to call me if you just need to chat - toll free number is 844.835.4325 and my direct line is 608.828.8847

Caring hugs to you, Peggy

[Robnrpbay in reply to FtB_Peggy]

Thank you so much Peggy. I definitely will call you soon, probably within the next week. The Wake Service is tomorrow night and the Funeral Mass and burial will be Saturday morning at 11:00 A.M. Thank you for your kindness.

Sincerely,

Bob

[FtB_Peggy]

Bob,

Will be thinking of you tonight and Saturday. Please take care of yourself!

Peggy

[Robnrpbay]

Thank You Peggy. Will talk to you soon.

Bob

[ThePurplePlace]

I am also Stage IV NSCLC Adenocarcinoma (diagnosed on 3/27/15) and like your wife, I first tried Chemo and then Radiation and have now been on Opdivo (Immunotherapy) for a little over a year. It has worked VERY well for me (despite some issues with side effects) -- My tumor has significantly shrunk and I'm currently stable and doing well. I'm currently on a "treatment break" and will be scanned again in three more months!

I think this drug saved my life and I feel very lucky to have had such a good response to it. The only downside for me, is that it has caused me to develop "Low Grade Pneumonitis" which is one of the common and well-known side effects. I'm asymptomatic and it was found on routine CT Scans. They took me off the Opdivo to allow it to clear and I've had this happen three times now -- But ever so, it's still worked so well and many feel it continues to work for 3-6 months even after stopping treatment .

I hope you wife does very well on it -- be sure to report any side effects to her Oncology Team. They will likely give you a long checklist of things watch for and your can read more on Opdivo's website here :

opdivo.bmscustomerconnect.c...

~ Lisa

[Robnrpbay in reply to ThePurplePlace]

Lisa

Thank you so much for sharing your experiences with Opdivo.I'm very glad that you are having good results with it.

My wife was not so fortunate. She passed away on Jan 2nd. The doctors in the intensive care unit said that she had Pneumonia and her kidneys were failing. It became a futile battle very quickly. Please don't get discouraged.Every case is different. I wish you all the best and God's blessings.

Bob

[ThePurplePlace in reply to Robnrpbay]

Dear Bob, I am deeply sorry and do very sad to read this. My heart goes out to you. I'm shocked and upset to hear this news. I can't imagine your pain... This us so scary.

Please take care.....My heartfelt sympathy to you and all of your family.

Lisa

[Robnrpbay in reply to ThePurplePlace]

Thank You Lisa.You are very kind.

[Jessi08 Volunteer]

Robnrpbay I'm so very sorry to hear about your wife.

My thoughts are with you and your family

[Robnrpbay in reply to Jessi08]

Thank You So Much Jessi08