valuad

Yup, Mike; for me it moves from the knees to the feet, back to the knees – and now it has struck my fingers. I can only describe pain as akin to gout [which I have always been prone to]. During most recent consult with the oncologist he suggested going on 10mg prednisolone/day for a week. Unfortunately did not work as hoped so am back to Naproxen – which does take the edge off the swelling/pain.. Aaaah, onwards!

Hello Anon… and Celeste;

A first post from me on this forum… been reading/lurking for a while!

First, Anon, back in November I was in precisely the same position as you – but also had extreme pain in both feet akin to gout. I was hospitalized for two weeks, and put on high dose steroids with both Colitis and Thyroiditis, and to this day I am still in the steroid tapering phase. No fun but in a weird way somewhat relieved that my oncologist has indicated I am not going back on Ipi/Nivo. The severity of the side effects [Grade 3] would suggest my immune system clearly did have a massive boost – and both CT and MRI in early Feb confirmed no disease progression. Recent clinical trial results (which Celeste pointed to) back up both of our Oncologists' advice – that is, even with one cycle, this single combination infusion may have the same efficacy as compared to someone who goes through the entire treatment cycle.

The story is of course ongoing – I have follow up scans end March/April…. So will be monitoring closely to ensure that single Ipi/Nivo infusion I received back in October continues to ‘work’.

But, like you, Anon, I worry about the “what if?” and what treatment alternatives might be available if the CT/MRI shows disease progression.

And so a follow up query for Celeste (or anybody else who might be able to offer insights) :
Celeste, you state that “Most folks with side effects to the ipi/nivo combo, can proceed to nivo alone…as ipi is the bad boy of side effects in this treatment… once they have had their side effects treated and resolved…with no significant problems.” During my most recent consultation with my oncologist I also suggested this on the basis that Nivo could be considered as a treatment ‘fall-back’ option for continued immunotherapy treatment. His response, as I recall, was that in his opinion Nivo was equally responsible for adverse side effects but he also made the point that my body’s reaction to Nivo would be such that it would in any case *see* Nivo as a combination treatment, and that I would therefore likely have the same adverse reaction to it as I had following the first cycle.

What might be the conditions that I could ‘safely’ continue with Nivo? [Colitis/Thyroiditis are being treated but are still an issue] Are there any clinical trials that show an extended benefit using Nivo only after having had an adverse reaction to the combination treatment? And are there other treatment alternatives [other than going back on Dafranib/Trimitineb]?

If only life was simpler!! Any experience from others that might provide further insight most gratefully received!

Many thanks,
David M