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Hi Kathy,
Great question. In my practice many years ago in the first days of Ipi clinical trials, we too kind of did the “phone a friend” in whatever sub-specialty we needed at the time. Since that time when Ipi got FDA approved we actually set up a formal “network” of sub-specialists that had in interest in this. Since they obviously can’t see all the patients with toxicity on their own as they have their regular practices to contend with, they have done many trainings with a core group of people in their department so that they are up to speed, etc on irAE’s.
In terms of managing patients with pre-existing autoimmune conditions, we are very similar to Krista in that it depends on the condition. Sometimes this is difficult though as patients may be being managed in their community for their condition. And as such we are unable to get them in for an appointment with a subspecialist here (high demand), because their condition is stable and they won’t be offering any “value-added” to the patient. In that case we will usually connect with their specialist on the outside and/or do an e-consult.
Thanks,
LisaThank you everyone! I too discuss with my patients that sound scientific evidence is really lacking in this arena and glad to hear others are discussing the same.
Best,
LisaInteresting conversation. We have been trying to do multimodality therapy with our ocular patients (i.e SBRT, ablation) in combo with ICI therapy. We’ve had a bit more success with this manner then just ICI alone.
In terms of our mucosal patients, we seem to have had better results from dual ICI therapy in this group, although to a lower extent than we see in the cutaneous population.
Take care,
LisaHI Brianna,
From my experience I would proceed with additional imaging, to rule out increased edema, radiation necrosis, and/or additional disease. The usual culprit I see is increased edema, s/p radiation coinciding with the start of ICI’s. Alternatively, you could just restart some very low dose dex (i.e 1-2 mg BID) and see if his symptoms resolve spontaneously. If so, then a really slow taper would be in order.
Great question!
LisaHi Lisa-
This is a great question. In my practice I continue to refer patients to their PCP for these type of issues. I discuss with patients that primary care and health maintenance guidelines are continually changing and that their PCP is the expert in this field just as we are in oncology.
I would completely agree. Just recently had a patient who recurred in the lymph nodes underwent surgical resection and now will start adjuvant nivolumab. Had to have a very difficult discussion about discontinuation of breast feeding as well as future fertility as she really would like to have more children. Not a conversation that came easily.
I believe in the patients for whom this is applicable this will be an important discussion upfront and included in the pretreatment teaching as with any other expected side effect.
Great question!
Hi Krista-
That is a very interesting question. I think this would be a difficult situation and I would want to reserve this treatment for a setting where other therapies have failed. I would not absolutely rule it out.
Hi Virginia, Agree the vedolizumab would have been ideal and we’ve done this in several patients. Have you tried to appeal to the company via a patient assistance program? We were able to get this paid for via this route for one patient. Additionally we had one patient that ended up having some really uncommon sort of pathogen and we were able treat with antibiotics and she had significant improvement and was able to wean off the steroids.
Take care,
LisaReally the only time I have seen this is with patients on high-dose steroids. But definitely something to keep in mind.
I don’t know if I’ve had dental issues per se. I do have a lot of patients calling regarding whether or not they can have dental work done. Might be good to better keep track of those and what they are having done, frequency, etc. Thanks for bringing forward.
Lisa
Hi Krista,
We tend to be a large referral center and a majority of our patients are traveling at minimum 1-2 hours each way to get their treatment. Often this is closer to 4-5 hours. We tend to see them every 3 weeks before their treatments. However with that said, we have an online messaging system as well as we have our nurse check in on them hopefully once a week, especially folks that we tend to think may be high risk for side effects. We tend to only get labs every 3 weeks.
Hi Krista,
That is a great question. Our practice commonly places patients on PCP prophylaxis for all patients on greater than 40 mg of steroids daily, that are anticipated to be on those steroids for greater than a couple of weeks. In general we will allow patients to discontinue the PCP prophylaxis when they are down to between 10-20 mg of prednisone.
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