Nausea, vomiting AFTER Opdivo therapy

[Floridita]

After about 1 year after the last dose of Opdivo I struggle with almost daily nausea, vomiting and almost total lost of appetite. Doctors so far could not find reasonable explanation, cause. Except for a slight motility issue with my stomach. Does anybody know this problem too and has advice on how to deal with it? Would be highly appreciated.

[Denzie Moderator Volunteer]

What kind of testing have they done? I’m wondering if a gastroenterologist who specializes in oncology would help or if it would be good to add a palliative care doctor to your team. I think I would ask for a palliative care consult- they have extra training in managing side effects.

[Floridita in reply to Denzie]

Thanks Denzil.

A gastroscope was done, not showing any issues apart from the motility being slow (sorry, not native English, hope it is understandable). But so far no gastrointestinal specialist was involved. Palliative care is unfortunately not really very well established here in CH. oncologists think it might be some kind of a opdivo side effect... will probably think about a second opinion in a different clinic.

[Denzie Moderator Volunteer in reply to Floridita]

You’re doing cbetter in English than I could in any second language. I’m not sure what country CH is so I can’t look for specific places to suggest.

The manufacturer has a website and there is a box at the top which will allow you to initiate a chat with someone there. Maybe they have helpful information.

opdivo.com

[Floridita in reply to Denzie]

Thanks, CH Is Switzerland... and yes, I know BMS and my oncologist works a) with them and b) even is in research. According to them: nobody is really interested in investigation and investment when it comes to side effects. I will probably try to ask BMS directly.

[Denzie Moderator Volunteer in reply to Floridita]

We need to work on making the drug manufacturers more responsive. After all, they could make a second fortune off of the treatment they develop to manage the side effects.

[Floridita in reply to Denzie]

I fully agree! I think they just make a lot of money with those new therapies and carrying about the side effects is just not as interesting from a financial point of view. I’m in a FB group of opdivo patients (German area) and if it comes to side effects, the standard answer is cortisone... if this doesn’t help, there is some kind of a big question mark... I will most probably try Cannabis oil drops next and hope this will help.

It is great to be alive, no doubt. But sometimes the side effects are difficult to deal with!

[ThePurplePlace in reply to Floridita]

Floridita,

I started using Medical Marijuana (Cannabis Oils/Edibles) about a month ago for this as well as horrible muscle/joint pain that we know is very likely an Opdivo Side effect -- I am starting at low doses, but so far I'm not seeing any response and that too is discouraging?

NOTE: If you are still on Immunotherpay, I would hesitate to try Cannabis because there was a study that did find using Cannabis with Immunotherpay "may" lessen the effectiveness. Of course, it's ultimatley your choice, but just wanted you to know this may be a concern.

[Floridita in reply to ThePurplePlace]

I don’t know yet. But I still hope it might help!

[Hilda-22 in reply to Floridita]

How did the oil help. It helped me a lot

[GMC1 in reply to Denzie]

Amen to that. This group has a lot of power, I saw it with Lisa's dad and the insurance allowance....finally.

[ThePurplePlace in reply to Floridita]

I have had the same unfortunate experience with BMS. Now that I am "Off" treatment they don't even want to talk to me. It's very frustrating, because you would think this data would be important?

As for testing, the only things my Onc has done are routine Abdomen Scans, he doesn't seem to "care" to even consider that the nausea is related. It's so frustrating.

Lisa

[KimGO2 Partner]

Hello Floridita. Our cancer registry is looking into the quality of life and issues surrounding lung cancer patients with a special survey for those who have or are currently taking immunotherapy. Please consider sharing your de-identified data for our Lung Cancer Registry by going to lungcancerregistry.org/. This international registry is open to any lung cancer patient.

[ThePurplePlace in reply to KimGO2]

HI Kim,

I am already on the Registry and appreciate all you folks do to try and advocate for us. I've been very frustrated with BMS because they no longer care -- seems like once they stop making money from us, they stop caring. When I was on Opdivo I was part of their "Opdivo with You" program and provided input to them following each infusion. Once I had to stop the drug, they stopped calling and no longer will follow me or my case. Very upsetting!!

[ThePurplePlace]

Floridita,

I'm so interested in knowing more about this from you because this is something I have been experiencing for over two years and it started while I was actually on Opdivo and has continued ever since actually over two and a half years now since I've stopped.

I do not vomit or it's very rare if I do but I have terrible bouts of nausea as if almost I have like some type of stomach bug all I want to do when I feel that badly is sleep so I don't have to feel so miserable. I have a poor appetite and don't eat it all because I thought of food with the nausea makes me feel even worse. my appetite has totally changed since I've been on opdivo and most foods don't even taste good anymore I ate a very bland diet and always have to appoint and don't like anything spicy but now it's even worse. When I was actually on up to evil I had the nausea a lot more often and it was and that's when I would tend to vomit somewhat. Thankfully that part of it has diminished and it only comes on randomly sometimes only every several weeks sometimes a couple times a month. It generally lasts a couple days and it also seems that I have intense fatigue at the same time. I have made this complaint to my oncologist for months and months but they don't seem to think or want to believe that it could possibly be Opdivo related, but I can't think of any other explanation since that's when it all began, plus I know more and more we are learning about long-term side effects that can be caused from Opdivo and start long after you stop the infusions.

My abdominal CT scans have appeared to be okay I do have two inguinal hernias that they are watching but they are not concerned about and they do not feel that they have any bro in the nausea. The only time I only way I can start to feel better is to sleep. I try to drink a lot of fluids and I also will take things like Pepto-Bismol, Tums or even Zofran when it's really ba. It's almost as bad as the nausea I had when I was on chemo. I've expressed this so many times and it's like no one's cares and no one's listening it's very frustrating.

On the upside my cancer is currently stable and has been since I was taken off opdivo for recurrent pneumonitis two and a half years ago. I'm very grateful that it did work well but the side effects have never been easy on me I always found it harder than chemo and I know most people find it easier I always have the nausea and I always had terrible fatigue + muscle and joint pains and that's another issue that has not ended.

I'm due for my next CT scans next week and now just got a letter from my insurance saying they've denied me abdominal scan because I have had no cancer in that area? yes I'm quite a well aware of that but I still had nausea for two and a half years and I still have stage 4 cancer that is known to spread so why in the world they are denying me having proactive screenings is very annoying and I need to get on the phone and appeal that today. They will be covering my chest CT and I'm pending a head CT as I also started my battle with a brain met. Thankfully that has remained clear but it's not as if my cancer has not already spread once believe me I do not want to have any type of cancer in my abdomen but I do want to find out what the heck is causing all this horrible nausea it greatly affects my quality of life when I'm feeling that miserable.

If you find any answers or solutions please post in here because I would love to hear from someone else who has experienced this and what they determined caused it and how they were able to treat it.

Thank you so much for sharing because I was about to write a post about this shortly to see if anyone else has been through this experience.

Lisa

[Floridita in reply to ThePurplePlace]

Dear Lisa

Well, I know exactly how you feel! I actually do vomit every once in a while , mostly mornings. Currently it is really bad, no appetite at all, do not even like to think about food. I talked to my oncologist and he now admits that yes it could be something the opdivo did change and that they are neither aware of nor that they know it or understand... this is at least something. Most probably I will have to go to the hospital to get whatever test done that could be helpful in finding the cause. I will certainly post if they find something! Wish you the best in the meantime!

[Floridita in reply to Floridita]

I found this, but do not have an account. Maybe somebody has? Sounds pretty much like what I have ...

ejcancer.com/article/S0959-...

[jenrodrigues in reply to ThePurplePlace]

I did opdivo for nearly a year. It did nothing for me. My cancer actually spread and the treatment damaged my thyroid so I lost 80 lbs. I now take thyroid meds daily. I had dry mouth horribly and could not tolerate spicy foods, or citric acid in fresh fruits at times not even pepper. I have been off the immunotherapy for almost 2 years now.Still I’m nauseous and my stomach is horrible. I have little to no appetite and I have to think long and hard about what I want to eat. By that time I’m starving and that alone will make me vomit. I feel as if I have IBS most of the time. I’ve had a cat scan and all was clear. I just try to have a bland diet. Eat as much as I can when I can. But still my stomach hurts. It’s such a tether tottering. Eat enough to fight cancer and stay healthy when you don’t have an appetite and your stomach hurts so bad and your own tastebuds have turned against you and reject even your all time favorites.

[anrean]

In addition to the oncologist, I have a gastroenterologist and it has been extremely helpful.

[Floridita in reply to anrean]

Yes I think this is now important for me too