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November 17, 2016 at 5:40 pm #23024
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?
MadeleineNovember 18, 2016 at 2:18 pm #69557Catherine PooleKeymaster
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.November 28, 2016 at 7:22 pm #69558
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….November 28, 2016 at 10:04 pm #69559msue5Participant
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 SueDecember 10, 2016 at 3:05 am #69560
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.
MadeleineMarch 4, 2017 at 7:53 pm #69561
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?March 6, 2017 at 3:50 am #69562jennunicornParticipant
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!May 15, 2019 at 4:00 pm #69563madeleine2Participant
This is going to be an update and retrospective. All I write is in hindsight so I do not want to be too hard on the doctors. My cancer started with a little mole on the calf and a positive sentinel lymph node. I remember asking my doc how this could have happened so quickly and no answer. My answer now is high mitotic rate 9, but mostly that I was on immunosuppressants (Humira) so my body did not try to stop the cancer.
I agreed to a “complete” lymphadenectomy (no other positive lymph nodes) and afterwards, doc says I do not need radiation bec it is very sensitive in the groin area. Now that I have had radiation there, I disagree: yes upper skin comes off but it was very superficial – could even go into the sea with it.
Two years later (2016) cancer comes back in left groin, so dissection had not been complete. New surgery and now they take me off humira and methotrexate. Again no radiation. From then on I struggle mightily to get RA under control, take massive doses of sulfasalazine, do diet changes, etc. The only thing that works is prednisone and that is not a long term solution. Try one pembro infusion, discussed above.
In 2018, cancer comes back again in left groin but now in a lymph node close to a vein. So doc cannot take out with clear margins. Finally get radiation, but I think cancer was already spreading to trunk.
Since then, groin has remained cancer free but I have cancer growing throughout trunk, in brain, and in bone right shoulder. I am now in palliative care because there is nothing left to do and I am weak.
Bottom line: do not underestimate impact immunosuppressants on cancer.May 16, 2019 at 5:42 pm #69564Catherine PooleKeymaster
I am saddened by your story. I didn’t see if the Braf/mek drugs had been of help or tried? Immunotherapy is wonderful for some but can be tricky. I hope you are not in pain and well taken care of.
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