autoimmune disease and immunotherapy

This moderated forum is to provide support and direction for newly diagnosed stage III/IV patients

autoimmune disease and immunotherapy

Postby Madeleine » Thu Nov 17, 2016 12:40 pm

I found a few snippets here and there on autoimmune (AI) disease on this forum and thought it would make sense to start a thread on this topic. So far, I have found sosocal, annieo, and msue5 as fellow travelers down this road, with the latter two suffering more complications than you would wish on your worst enemy.

On the bright side, there are some recent studies which offer more than anecdotal reports. In JAMA Oncology of February 2016, a study of 30 AI patients on ipi found 27% had flare-ups and 33% had irAEs (more than general population) for a response rate of 20% (like general population).

At the 2016 ASCO conference, Menzies reported on 119 AI patients, mostly on pembro. 38% flared (6% grade 3) and 29% experience other immune-related adverse effects (irAE) for a 33% response rate. A subgroup of patients on immunosuppressants before starting the trial suffered 37% irAE for a 40% response. Conclusion: rheumatological disorders are more like to cause irAEs than other AI diseases.

In a video for the Cancer Research Institute, Dr. Weber of NYU advocated for the use of PD-1 or PD-L1 for AI patients who had been on prednisone but were weaned because it causes less collateral damage than ipi or interleukin. (June 27, 2016)

These studies all involve Stage IV patients as there was a response to measure. I am Stage IIIc now so for me it would be a shot into the dark. Although I do not qualify for a trial, my doc has no problem putting me on pembro.

Anyone else in the same boat?

Madeleine
Madeleine
 
Posts: 13
Joined: Sat Jun 07, 2014 8:05 am

Re: autoimmune disease and immunotherapy

Postby Catherine Poole » Fri Nov 18, 2016 9:18 am

I'm not, but it is of great interest to me. I know the doctors at Sloan Kettering were looking at this too. Autoimmune disease seems like another disease area where knowledge is lacking. My grandson has one called dermatomyositis and they put him on the adult drugs like plaquenil (for malaria) and now monthly IVig infusions. This started at 15 months.
I think Pembro/Pdi drugs in general will be better than IPI of course. please keep in touch and let us know your experience.
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
Posts: 10745
Joined: Wed Jan 02, 2008 12:09 am

Re: autoimmune disease and immunotherapy

Postby Madeleine » Mon Nov 28, 2016 2:22 pm

I see that I am still alone in my boat but at least I am getting a lot of views, so that must stand for something.

I found one more relevant study (Eggermont 2016 at ASCO conference). This study did not involve people with auto-immune disease, but did test benefit of immunotherapy for Stage III with 951 participants. Result: 48.3% remained distant met free for 5 years vs. 38.9% in the placebo group. Not a huge difference but beggars can't be choosers. This result was obtained despite the fact that over half of the participants discontinued after one or two infusions. The drug administered was ipi 10mg/kg, so no wonder the adverse effects were substantial.

All in all, I have decided to give pembro a try, bearing in mind that I can always discontinue as well. What bothers me most is that there is no way to know if it will have any effect....
Madeleine
 
Posts: 13
Joined: Sat Jun 07, 2014 8:05 am

Re: autoimmune disease and immunotherapy

Postby msue5 » Mon Nov 28, 2016 5:04 pm

Hi Madeleine
All of my problems came from Ipi that I had in 2013. I am now on Nivolumab and don't know how that is going to affect my autoimmune conditions. It took so long for some things to crop up after a Yervoy then longer to get diagnosed with them. What autoimmune condition do you have?
Mary Sue
msue5
 
Posts: 444
Joined: Tue Feb 09, 2010 10:22 am

Re: autoimmune disease and immunotherapy

Postby Madeleine » Fri Dec 09, 2016 10:05 pm

Hi Mary Sue!

Good to hear from you! I have rheumatoid arthritis and just got myself off Humira (so far so good - as long as I live really quietly my body is behaving itself). Ipi has terrible side effects. I am praying that pembro (Keytruda) will be a little kinder.

Madeleine
Madeleine
 
Posts: 13
Joined: Sat Jun 07, 2014 8:05 am

Re: autoimmune disease and immunotherapy

Postby Madeleine » Sat Mar 04, 2017 2:53 pm

Time for an update on my experience. Unfortunately, I did experience a fairly serious flare up of my RA starting mid December which we are combating with steroids and sulfasalazine (an old-fashioned RA remedy). The jury is still out whether I will be able to control the RA with sulfasalazine alone.
In spite of the flare up, I did have an infusion with pembro on January 30 and immediately experienced side effects: lose stool and very stiff muscles in my upper back, followed a week later by an attack of peripheral neuropathy causing my legs to tremble uncontrollably. This was fixed with an IV and a potent cocktail of drugs and I am left with just numbness in my toes. All of it was enough for my doctors to conclude that continuing "preventive" immunotherapy with my condition was not worth the risk.
So I am back in the wait and see category, knowing that I am at high risk of metastasis and not knowing whether, once the metastasis manifests itself on a scan, I should even try pembro or any of the other immunotherapies again. A hard pill to swallow. In retrospect, I think I should have waited until I had the flare up under control, but who knows?
Madeleine
 
Posts: 13
Joined: Sat Jun 07, 2014 8:05 am

Re: autoimmune disease and immunotherapy

Postby jennunicorn » Sun Mar 05, 2017 10:50 pm

I think this will be of interest to you and anyone else wondering about having a pre-existing autoimmune disease and starting immunotherapy

Wishing all the best for you... I deal with joint pain/inflammation as a side effect of Ipi/Nivo.. nothing close to RA flare ups, but definitely not fun!
jennunicorn
 
Posts: 66
Joined: Mon Feb 29, 2016 11:36 pm


Return to Newly Diagnosed Stage III/IV

Who is online

Registered users: Bing [Bot]