I have been on Kyprolis, ?, dex clinical trial for a few months now - every Wednesday. Just recently I have experienced a burning sensation 15 mins into my 30 min treatment. The first time this happened, I didn't say anything as I didn't want to be a bother and only had 10-15 left of infusion. The pain wasn't that bad.
Big mistake - ended up doing some damage and arm hurt for 4-5 weeks (requiring pain meds some nights, also so had to continue each week with my left arm until the right arm repaired itself).
This week the burning sensation returned and it was decided to extend time over 45 mins next week. This week I also used a heat pack and had treatment slowed down for last 15 mins. I also put a heat pack on arm when I returned home for 30 mins. I had no issues with pain in that arm after treatment.
Has anyone else had burning sensations with the Kyprolis (cafilzomib)?
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Re: Burning sensation with Kyprolis - anyone else have it?
Hi AussieGirl,
My husband received Kyprolis/dex/Revlimid over a 24 month period (clinical trial for newly diagnosed multiple myeloma). He ended up having to get a port around the fourth month, but before that, he did not have any burning in his arms during infusion.
However, I recall the nurses saying he should let them know if he did, so I assumed that was a side effect that others in the clinical trial did experience. He recalls the nurses saying they would infuse it over a longer time, as your nurses did, plus add heated towels, if it burned. They were very watchful about that.
My husband achieved stringent complete response, although it took more than the 24 months and continued Revlimid maintenance afterwards to get there.
Sending best wishes to you that you will have as good luck!
Chris M.
My husband received Kyprolis/dex/Revlimid over a 24 month period (clinical trial for newly diagnosed multiple myeloma). He ended up having to get a port around the fourth month, but before that, he did not have any burning in his arms during infusion.
However, I recall the nurses saying he should let them know if he did, so I assumed that was a side effect that others in the clinical trial did experience. He recalls the nurses saying they would infuse it over a longer time, as your nurses did, plus add heated towels, if it burned. They were very watchful about that.
My husband achieved stringent complete response, although it took more than the 24 months and continued Revlimid maintenance afterwards to get there.
Sending best wishes to you that you will have as good luck!
Chris M.
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Chris M
Re: Burning sensation with Kyprolis - anyone else have it?
Hi Aussiegirl,
Where are you doing the clinical trial?
Best, hope22
Where are you doing the clinical trial?
Best, hope22
Re: Burning sensation with Kyprolis - anyone else have it?
Hi my husband is also getting the burning sensation with Kyprolis. He found that infusing it slowly and making sure that it's room temperature helps. The medication can be left out for up to 4 hours but is usually kept refrigerated which contributes to the burning. Ask them to keep it out after they mix it and take it out a hour before its infused the second day. Hope this helps.
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Jade
Re: Burning sensation with Kyprolis - anyone else have it?
Doing the clinical trial in Bakersfield CA. But it is through the Myeloma Institute in LA
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aussiegirl
Re: Burning sensation with Kyprolis - anyone else have it?
We have found that if an IV of fluid is piggybacked and run in wide open with the Kyprolis, it helps a lot.
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Stevejg
Re: Burning sensation with Kyprolis - anyone else have it?
I am receiving Kyprolis / Pomalyst / dex.
Two days after my fifth infusion (the one before last in the first cycle), my arm where I received the infusion swelled, and it started hurting pretty bad. Two weeks later, it still hurts, but the swelling got better. I asked the chemo nurses, and they said the infusion irritated the vein, but it wasn't clear if it was the needle or the Kyprolis.
Aussiegirl, what kind of damage did you experience, was the arm swollen, or localized to the area where you received the infusion?
Two days after my fifth infusion (the one before last in the first cycle), my arm where I received the infusion swelled, and it started hurting pretty bad. Two weeks later, it still hurts, but the swelling got better. I asked the chemo nurses, and they said the infusion irritated the vein, but it wasn't clear if it was the needle or the Kyprolis.
Aussiegirl, what kind of damage did you experience, was the arm swollen, or localized to the area where you received the infusion?
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