STAGE 4 from Dec-2019. After 10 months of TAF/MEK treatment (Targeted Therapy) with good results, due to some progression and really bad side effects, I was changed to Pembro (Immunotherapy) + Lenvatinib. In a clinical trial. Now 3 months after begun the new therapy I have colitis almost every day and abdominal pain (Loperamide used as emergency). CT scans are OK and treatment is working. My Onc give me Prendisone for 3 days and I felt great, but after stop it, colitis back again. I’m very frustrated at this point. I been thinking in give up and let treatment off. Please share your experience, I need your moral support.
- February 7, 2021 at 9:31 am
ed williamsParticipantHi Jay, do you know if you are getting lenvatinib? The VEGF inhibitor is known to cause diarrhea in clinical trial literature. Has your medical team considered stopping it but continuing with pd-1. Second question is how many times a day are you having diarrhea, the grade is based on frequency and the use of steroid is based on the grade. I was grade 3 and it took a long time to get it under control.
- February 7, 2021 at 4:46 pm
THMooreParticipantI got colitis after my third combo treatment. MDA did a colonoscopy and put me on infusions of vedolizumab once a month while I continue on immunotherapy. It literally stopped my issues in less then 24 hours. Haven’t had any issues since. Wished I had got it right away but the idiot local doctors wanted me on prednisone and anti diarrhea drugs. Cost me almost 7 weeks. Anyway, check it out. Good luck
- February 7, 2021 at 6:43 pm
Thanks Ed and Trent
- February 7, 2021 at 8:02 pm
I have grade 1 to 2 diarrhea. Also with medicines for hyperthyroidism and high cholesterol levels. I’m not sure I’m on Lenva or Placebo, but i have a some signals that could suggest I’m receiving th Lenva (nails with lines) and when stopped Lenva (5 days off) as security for an radiosurgery I felt better and digestion was regulated for a couple of days. I will talk about this with my Onc.
Thank you very much.
ThreefittyParticipantI have experienced Yervoy activated colitis 2x. Stage 4 guy.
- February 15, 2021 at 7:47 pm
The first time followed standard combo treatment. We got there a bit late (like 4-5 days) in response after diareah onset (unclear if this really hurt), and I had 5 weeks of hospital over 4 months of recovery which was largely due finally to a 3rd and 4th round of infliximab which, I guess can only be given every 3 weeks. It was pretty hellish, lost 40 lbs in 40 days. Complete loss of vitality and muscle mass. Steroids in the 80s. Which maka me crazee.
Parenthetically, I also think the regional hospital I was first at did not have the oncology and conventional internal medicine background to address this. The treatment I got later in a University (Miami) hospital (connected with my oncologist too) was simply better focused on the interplay of the issues. So I count that as a “lesson”.
Yervoy apparently worked, and when I had a return my choice was chemo or reduced dose combo return, which I chose.
The dosage was reduced, we were ready for the colitis and avoided hospitalization with outpatient infliximab and 40 mg Pred., solving the colitis in 2-3 weeks.
I recently joked that I was ready for my next “shot of Yervoy, with an infliximab chaser” and got a laugh from my doctor, a first. That’s problematic of course, but this is somewhat a tale of hope of colitis getting better. I can tell you at it’s worst my feelings of “who would want to live like this very long anyway” were higher than they are now.
I found it not so hard to forget the 70 some days of every 2-4 hour bathroom trips on the clock. But I am still apologizing for my steroid rage outbursts of the time, LOL
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