Pain from Immunotherapy

Treatment / Research
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Interested to hear everyone’s experience with how pain was managed when receiving antibody therapy.

Presumably most people were treated with morphine (plus other oral painkillers like paracetamol/acetaminophen) - but how long did it take to get the dose to a level where the pain was controlled?

I know not everyone gets severe pain, but I think most do and as an emergency physician myself (who treats pain on a daily basis), I’ve been surprised at how it’s managed.

Sam - I noticed Shalev was on a ketamine infusion when he met the PM during his final cycle. Did he get ketamine for all of his cycles? I’m guessing ketamine worked well looking at the photo? (Hope the packing for NYC is going ok!)

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My son didn’t respond to the morphine at all when he had his surgery, so he was switched to a Dilauded pump at that time, with a steady Narcan drip to offset the itching side effect. This worked very well for him for the surgery & his 1st SCT. However, he suddenly developed an allergy to it when they began using it for his 2nd SCT, so they pulled the Dilauded & switched him to Fentanyl, still maintaining the Narcan drip as he had intense itching with the Fentanyl as well.

His first antibody therapy it took about 6 hours of him screaming in pain before they got his dosing right for the Fentanyl / Narcan steady drip, as needed, & rescue doses.

I feel I should mention he has a VERY high metabolism though & his body chews right through any med given. At 3 years old/35 lbs, he was on the same dose of some meds as a 17 year old football player down the hall from us. So he is complicated & leaves the dr’s / nurses scratching their heads at times as to how the doses they try do nothing or only give him relief for very, very short time spans. (All the meds prescribed for him when he was diagnosed at 2 1/2 doubled in dosage amount by his second round of chemo even.) So figuring out his dosage during the first round was likely effected by this too.

But he did great after that 1st round of antibody therapy in regards to managing the pain. That is until his 3rd round of antibody therapy, at which time he had retained so much fluid during the antibody therapy that the Fentanyl did not metabolize through him, like Dilauded or Morphine would have even with all the fluid retention. This caused him to have an opiad overdose since there was no way to know his body was doing this, as this has only happened a few times in the world, with adults, we were told. Thankfully, he was in my arms when his body OD & he began seizing, so it was caught immediately. They started CPR, & that combined with the Narcan already running, they were able to bring him back.

So I decided no Fentanyl again…ever. And he is now right back where he started & got Morphine the last 2 rounds & now it works amazing for him.

So, as a parent & doctor yourself, if you don’t think something is working for your child, my advice would be to just ask for another option. We were warned the 1st round is the worst as they figure out dosing, which it certainly was, but once they figured it out, the pain never got ahead of him/them again.

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Hello Mark
We are just in the first cycle of ch 14.18/cho LTI. First two days Filip got morphine. After that he just paracetamol. We did not problem with pain.
What kind of immunoterapy your child will take?
Unituxin (Usa. COG) or Isquette ( Europian. Siopen)

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I think a key huge difference are the between the 3 big protocols going.

  • COG: GM/CSF+IL2 and antibody
  • SIOPEN: usually only antibody these days
  • SIOPEN LTI trial: antibody slowly infused

All three treatments have distinctly different pain profiles, IL2 raising the pain levels quite a lot and LTI reducing it quite a lot.

Added to that as @Jacoby16 mentioned stuff hugely depends on the kids, some retain tons of fluid causing various options to change. Some get lots of pain, some have less. I heard of one kid that was 14kg and would retain 5kg of fluid during treatment!

We were on antibody with no IL2, we found pain quite manageable. For all treatments we got fentanyl+ketamine(subcat) the baseline was pretty much the absolute minimum they could give. From 2nd round onwards we needed no boluses.

I could not agree with that any more, for example we had terrible side-effects from promethazine, it would drive Shalev bananas, he would jump up and down on the bed and it was nerve wracking. paracetamol+antibody+ketamine+fentenyl were a walk in the park compared. We ended up swapping it for loratadine and all went well from that day on.

We followed to protocol of the hospital (cocktail of fentenyl+ketamine) which worked great for us. Shalev was quite alert, happy and playful during his antibody. I think he was a bit of an exception cause the nurses said they never saw someone take it so easy. But then again to date they were mostly treating with IL2 which is a completely different experience.