I am new here. I have been on chemo and radiation this year for lung cancer (Stage three). Stopped radiation a few months ago. I am dealing with the pains in the legs and chest, the nausea and the shortness of breath, but the fatigue is the worst.
My oncologist is going to try Nivolumab (Opdivo). Has anybody else experienced a similar history? While we all are different, I'd like to hear about the experience. It would be wonderful if the fatigue eased up.
Thank you, John
I have a very good friend, her husband is on nivo for about 6 month, it's holding the cancer, no progression and no side effects, none whatsoever.
My husband has small cell, and he wanted to try nivolumab too, but it's only available for NSCLC we were told. They lie, I think it's available for compassionate use though, but can't fight stupid rubbish DRs here in AU.
If your onco offered it, you should give it a go, there are lots of people with great results with it.
In the US at the current time, Nivolumab and Nivolumab combined with Yervoy are listed as possible second line treatments in the NCCN treatment guidelines, but have not yet been approved by the FDA. Things may be a lot different in Australia, though.
Anita
I haven't tried any of the immunotherapy drugs but most of what I've read is positive. I hope you do well.
Sending best hopes that you will do well on nivolumab. I know some people who are doing very well on it, and leading active lives. Please let us know about your experience with side effects and efficacy, it could help a lot of other people.
Anita
Welcome John!
I am sorry for what you are enduring right now.
As you can see, you will find support here and helpful advice from the voices of experience.
Take a peek at our website (freetobreaethe.org) to see what we offer (all our materials are free), and don't hesitate to contact me if you need anything. pbezruki@freetobreathe.org
Hi John, you don't say whether or not you've experienced progression. Its always a great idea to have your eyes on what is new and coming up in order to be prepared if/when progression occurs.
My concern right now would've ruling out pneumonitis. When did you finish treatment? Pneumonitis can develop even 6 months after treatment. You've some classic symptoms.
I share this article from Cure Magazine as it is written in plain English. curetoday.com/publications/...
Please let us know what you learn.
@johnsheek Hi my name is Jo I had stage three adenocarinoma they removed my upper lung on my left side was in lympnodes. I turned down the radiation I was told it could mess up my esphagus and they would have to put me in hospital and tube feed me and if thats not enough they told me it would mess up my good lung so I said no. I did six months of chemo. Its been over three years the cancer is gone and I count myself lucky. I didn't mean to talk so much. Even though the cancer is gone the exhaustion is not I hope your tiredness gets better it would help you alot. I wasn't on opdivo. I was on taxitere and carboplatin. Just take it slow and maybe your tiredness will gradually go away. I sincerely hope it does. Jo
I was hospitalized almost died from chemotherapy my stage IV lung cancer is stable but opdivo as my next therapy.
Would love to hear others experience with it.
Donna
i'm on obdivo and i had stage4 lung cancer that spread while i was on chemo and in june i went on opdivo and it was gone sept i will let you know i have another cat scan on monday to see if it is still gone
I tried Opdivo, no side effects but it did not help me. I'm on Keytruda now, haven't heard about my pet scan yet so I don't know if it's helping. Nancee
Johnsheek,
(My cancer status: I have Stage IV HPV Cancer in my lungs. When I was diagnosed on Janary 5, 2016 I was also given 6-12 months to live. I just passed the 12 month mark two days ago, and as you can tell, I'm still here. This is my third dance with "The Beast" since 2008.)
I went to Johns Hopkins in Baltimore, MD to get treatment that started with a clinical trial using Immunotherapy to treat HPV Cancer in the lungs. I had HPV Throat Cancer the previous year, 2014, and I had been "cured" of that, but it had spread to my lungs within a year of being "cured". The drug I was given was Nivolumab. We drove to Johns Hopkins on May 27th to have my 5th infusion of the Clinical Trial Drug when a scan done that day showed I had developed pneumonitis. That got me yanked from the clinical Trial which ended my immunotherapy experience. It also explained why I was short of breath all of a sudden and a high dose of
The drug shows great promise for other types of cancers, but for the HPV type, it is still in the clinical trial phase, and does not show a great deal of promise, or so I have been told.
Either way, with or without the immunotherapy drug, my cancer is terminal and the best any treatment outcome could hope for is simply a few more months of life. However, it truly is hard to discern how much longer you get by having the immunotherapy treatment, when one considers the life span of a terminal cancer patient varies so much that in the end, if you "gain" three additional months of life, what is that being measured against?
My over all opinion of any of the Immunotherapy Treatment Protocols is very simplistic in it's view, and probably overly so, but here it is; if you have cancer, and do not try everything that is possibly helpful to your survival, you are not doing yourself or your family any favors, and probably have just given up on living.
Even though my own experience with Immunotherapy was not successful, meaning my life has not been extended, insofar as that is measurable, I have left behind a data point for the researchers that one day will find a way to cure cancer. So with even that being the least one can do to further the search for a cure, it serves mankind in it's search to prolong the lives of those desperate, or unwilling to give up.
I have been fighting fatigue since 2008, and I have decided I can live with taking more naps, and not driving and getting to rest and take it easy. I am 52, most likely will not see 53 in August, and I have just decided to give in to the fatigue, and spend the last months of my life just doing whatever I want, and sleeping whenever I want. It sure beats more drugs, more doctor visits, more waiting in waiting rooms, etc.
I would find a happy medium and go with the flow.
Mike "Serrecko" March
Leader of The Skyline Gaggle of Noobs
A Fundraising Paintball Team
I pray you can find some relief for this pain. The side effects of the treatments can make you miserable. When I was on chemo, I did very little physical work because of complete exhaustion. It zapped my energy and my strength. I found out the day before my last radiation that I had pneumonia. When was your last CT Scan? It's possible that you have other things going on in your body.
Sometimes it helps to be totally blunt with your doctor. You have to tell him exactly what you feel like and ask for help.
God bless you and keep fighting.
My husband has been on the Nivolumab treatments for nearly a year now. He is doing very well with it. The only side effect he's experienced has been occasional diarrhea, and he eats a plate of steamed broccoli (his 'go to' for almost any side effects of his treatments) and that seems to take care of it almost immediately. Nivolumab seems to me to be one of the best things the medical community has come up with for this disease.
Recurrent Adenocarcinoma is now Stage IIIB
How often PET and CT?
Almost done with chemo radiation treatment 
