Anyone experience Cytokine Release Syndrome after 1st Xgeva injection?

[Farmhand]

after receiving my first monthly Xgeva injection I experienced a moderate cytokine release syndrome for several days: high fever, rapid heart rate, uncontrolled chills, and shaking, low oxygen, crackling lungs, pneumonia-like symptoms, severe headache…..

Felt better after approximately 10 days and then had stabilized ALP (no progression on bone scans )for the next four months and slowed PSA rise significantly. Did not receive any additional injections as the first injection was only meant for 30 days, but decided not to receive more after initial reaction.

[j-o-h-n]

From Google MacDougal...

Cytokine Release Syndrome (CRS)

Cytokine release syndrome (CRS) happens when your immune system responds to infection or immunotherapy drugs more aggressively than it should. CRS symptoms include fever, nausea, fatigue and body aches. Prompt treatment is essential, as symptoms can worsen quickly.

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Care at Cleveland Clinic

Immunotherapy for Cancer Treatment

Overview

What is cytokine release syndrome?

Cytokine release syndrome (CRS) — sometimes called cytokine storm or cytokine-associated toxicity — is a condition that develops when your immune system responds too aggressively to infection. It can also happen after certain types of immunotherapy, such as CAR T-Cell Therapy.

With CRS, your body releases chemicals called cytokines. This process can result in a number of different symptoms and manifestations. People with CRS typically develop fever and a variety of other symptoms, which can affect multiple organs. Prompt treatment is key to reducing these exaggerated immune responses.

Good Luck, Good Health and Good Humor.

j-o-h-n

[VisorF9]

Hello Farmhand. Sorry to read your experience with Xgeva. I had my first Xgeva injection ten days ago and the only response to date has been increased spontaneous fatigue. Urologist has scheduled Xgeva every three months only. Received the Xgeva along with Trelstar 2 days following 5th of 6 scheduled Xofigo (Radium223) infusions. Side effects to Xofigo have been increasingly concerning. Nausea, bone pain, chills, significant fever. Have decided to forgo 6th infusion. Wish I could provide useful Xgeva support. Best wishes to you.

[Farmhand in reply to VisorF9]

thank you so so much for response. So sorry that you are experiencing such difficult side effects with.Xofigo. Maybe sometimes less is more in terms of number of treatments….

[Islandboy2021]

The only side effect I noticed with Xofigo was sensitivity to sunlight as I had the treatment during the summer. I have been getting Xgeva injections every month for a year now and haven’t noticed any side effects. The problem is that it’s hard to rule out what side effect is caused by any one drug when you have been heavily treated. Also we all individually react differently to these drugs that we are taking to slow the cancer from spreading and to help prevent other health complications.

[Farmhand]

thanks for reply

[Seasid]

On which drugs you are on? Maybe the combination of drugs are causing your side effects?