- April 9, 2021 at 6:57 am
Just wondered has anyone any experience of immunotherapy post colitis. My husband is stage 4 with lung metastases he had diarrhoea from day 5 of his first ipi / nivo with ended up in stage 3 colitis – 10 day hospital admission and ultimately getting infliximab which led to almost instant miraculous resolution of symptoms. He is a relatively quick steroid taper over 3 weeks and his immunotherapy going forward needs to be discussed. I just wondered had others had just nivo in this situation – or would they ever do both with infliximab prophylaxis? We will obviously discuss all with his oncologist in the coming weeks and it’s early days as I know the steroid taper may lead to problems but would love to hear others experiences.
hxcadamParticipantI haven’t had the combo but back in 2017 at initial Stage 3c dx I had 2 rounds of Ipi at 10mg/1kg (about 1000mg). I ended up with colitis but not in the hospital. They stopped me after that. In 2020 I progressed and they put me on Opdvio monthly at 480mg and have not had any side effects from the immunotherapy that I can tell.
- April 9, 2021 at 10:43 am
EdwinParticipantIn 2016 I had melanoma in many bones and had very bad diarrhea soon after my 1st ipi/nivo infusion. I needed to wear an adult diaper at night and when I was more than 3 minutes from a toilet. I lost too much weight and had to wait 9 weeks between my 1st and 2nd ipi/nivo infusion. I received nivo alone twice between my 1st and 2nd ipi/nivo infusions. I received all 4 ipi/nivo infusions. My oncologist reduced the dose of ipi in half for my 2nd, 3rd and 4th ipi/ivo infusions and my side effects were not as severe for those last 3. My February 2021 PET CT scan showed: “Sclerotic skeletal lesions, especially spine and ribs, which are unchanged in appearance and remain FDG negative. These presumably represent treated skeletal metastases.” I have been NED for over 1 year.
- April 9, 2021 at 1:41 pm
Thank you both for replying. I can’t even imagine how tough 10mg/kg must have been – you probably had quite enough in your system with two rounds at that dose.
- April 10, 2021 at 6:01 am
I hadn’t even thought of a reduced dose Edwin or indeed nivo first and then returning to combination with ipi. I think they’re likely to say we’re done with ipi but it would be great if a solution like yours was considered too. Delighted to hear you’re 1 year NED.
ThreefittyParticipantMy first immuno tx was in a clinical trial in 2017 where I got optivo only (unblinded now)
- April 10, 2021 at 1:34 pm
Progressed in 2020. This seems to suggest I am an optivo non-responder. So I then got the combo.
After my second combo tx, I went way south with colitis. 6 weeks in hospital total, and maybe 60 days of “adult diaper” level incontinence. 2+ months of nothing by diareah every 2-4 hours.
3d or 4th dose of infliximab + massive steriods (80mg) finally got things under control. My doc still refers to this as “almost killng me”. I have no doubt.
I got no other treatment after the second combo dose. (at this point)
It was enough though and I responded to the 2 combo treatments and was NED, but then had a big body wide outbreak 5 months later.
I returned to the combo and again almost instantly had colitis. The dosage was reduced; I’m not sure how much, wanna say 3mg from 10.
Also the second time we had a quicker response with infliximab and I did not decline for weeks, I had one out-patient re-hydration along with the infliximab, and I was better (solid) within 10 days.
I was given the next 2 rounds of optivo only. I am told I cannot conclude the Optivo is of no value. I am pending the forth treatment.
My scans following the second ippi application are once again showing retreat of mets and no new growth. My vitiligo expanded. With Wide brain radiation, my brain mets have also stopped growing. Again possible ippi at work as well.
I am a total believer in yervoy in my case and am very invested in this issue of side effects vs. effectiveness.
My belief is that I am very fortunate to have an experienced onc who is in a place of knowledge where he was willing to go back to the poisonous well of ippi. It is a complete ethical morass to ask an MD to “give me poison and save me, but don’t let it kill me.”
Looking forward, I have daydreamed that now that if we have the “low dose ippi and an infliximab chaser” figured out, this could be a pathway to something durational.
Side question; I understand the body “learns” from the immuno – so is there a limit or point of exhaustion of this treatment? Is that still coming into our understanding as we wind out into decade 2 of the revolution?
In any event, if my next scan shows progression again, I will be lobbying for the 4th treatment to include the ippi. This has been a somewhat subterranean discussion with the MD. It is clear from product specs (and, you may find behind that insurance restrictions) that I am in unknown territory as far as continuing to get this.
But there may be an argument as well that a certain sub-population gets great results but with side effects that are so dire that the SOP is just to abandon the therapy. I’ve seen Bubbles address this conflict parenthetically in a years ago post. Conservative medicine will undoubtedly be a deadly problem for some who might otherwise have hope.
My original colitis was definitely Hell and life threatening. My second go around was something any of us would happily endure even once every 4 months if it delivered the melanoma killing goods.
Stay tuned, as I certainly will be to you and all of us in this boat. You may note inherent in my experience: I drew the “lucky arm” of optivo only in the CT when it wasn’t otherwise available.
Higher efficacy. Fewer side effects. Didn’t work.
Finally got to the less effective and high side effect Yervoy and that’s what seems to work. I don’t think I am alone with this profile. There is also a quite a bit of unknown info as well logical leaping around here, I will acknowledge.
What a rollercoaster threefitty – really interesting to read your experience of ipi after a severe colitis. It’s all such a judgement call on the part of the oncologist – lots of the guidelines seem to suggest permanent discontinuation with grade 3 colitis (and absolutely with grade 4) but as you point out when you clearly seemed to respond to the ipi it was worth risking the colitis again and great that you and the oncologist were willing to brave it again. Keep us posted on how you go.
- April 11, 2021 at 9:34 am
JudiAUParticipantI had mild diarrhea with the combo, but nothing like what is being discussed. It was pretty persistent but always pretty mild and could be controlled. I had a high fever which resulted in a break but I resumed The combo when it was controlled. I do have lot of experience with steroids though and I was taking them through my immunotherapy. I finally, finally got off them after a slow taper. The slow taper was my choice because it had been through the ringer with them before. Short term steroid use does not provoke the same issues so I wouldn’t be to concerned about it.
- April 11, 2021 at 1:56 pm
- April 13, 2021 at 11:48 am
I’ve had a history of colitis before being diagnosed with Stage 1b in mid 2016. When things progressed to lymph nodes and liver in late 2017 my oncologist and I sat down and came up with a game plan. We decided that due to my pre-existing condition of colitis and not wanting to flare it up, we would do Nivolumab only infusions every two weeks. Besides the once is a while, very mild nausea, I did great on Nivo alone. My first PET scan in early 2018 after 3 months of infusions showed all mets in liver had disappeared and the lymph was not showing any uptake in the PET. I had a recurrence in my small bowel, in Dec. 2018 that was removed via surgery, and did another year of Nivo only after the surgery. I’ve had nothing show up on my PET since then and have been done with immunotherapy since April of 2020. So, to make a long story short…you can have great results with Nivo only, without any of those side effects.
Best of luck.
Thanks Judi – your diarrhoea sounds like what my husband started out with – persistent but manageable – if only it had stayed that way for us. Great that you were able to continue combination treatment.
- April 14, 2021 at 4:05 pm
it’s so helpful to read that you’ve done well with nivo monotherapy SRV – which is what we are going to be resuming following our meeting today. It’s so easy to get hung up on combination treatment – but as with your colitis everything is a risk benefit ratio and reading your post has reminded me to keep perspective!.
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