Itch with liver pNets

Yes, some people with liver metastases from pancreatic NETs do experience intense itching, especially if the liver is not functioning normally or if there is impaired bile flow.

Itching can occur when bile acids build up in the bloodstream, even before jaundice becomes obvious. It can range from mild to severe and can affect the entire body.

If this is a new symptom, I would let your oncology team know as soon as possible. They may want to check liver function tests, bilirubin, alkaline phosphatase, and imaging to see whether the itching is related to the liver or another cause. Sometimes medications can also contribute.

The good news is that there are treatments that can help if the itching is due to liver dysfunction or bile acid buildup, so it's worth bringing it to your doctor's attention rather than trying to manage it on your own.

@mcharlesfrancis what would those treatments be?

If the itching is caused by liver dysfunction or cholestasis (reduced bile flow) from liver metastases, there are several treatments your doctor may consider. The choice depends on the cause and severity of the itching.

The most commonly used treatments include:

Cholestyramine
Often the first medication tried.
It binds bile acids in the intestine so they are removed from the body instead of being reabsorbed.
Works best when itching is due to bile acid buildup.
Rifampin
Used if cholestyramine doesn't provide enough relief.
It changes how the body processes substances thought to contribute to itching.
Liver function needs to be monitored while taking it.
Naltrexone
Can be effective for severe itching related to liver disease.
Works by blocking opioid receptors involved in the itch sensation.
Sertraline
Although it's an antidepressant, it has been shown to help some people with chronic itching from liver disease.
Antihistamines
Medications like Hydroxyzine or Diphenhydramine may help you sleep, but they often don't work very well for cholestatic itching because histamine is usually not the main cause.
Treating the liver metastases
If the itching is caused by liver tumors impairing bile flow, treatments such as Y-90 radioembolization (TARE), embolization, ablation, surgery, or systemic therapy may reduce the itching by shrinking the tumors or improving bile flow.

If someone with pNET liver metastases develops new intense itching, I would also recommend asking the doctor to check:

Bilirubin
Alkaline phosphatase (ALP)
AST and ALT
GGT
Albumin

These tests can help determine whether the itching is related to liver function or bile duct obstruction.

The important point is that you don't have to "just live with it." Many patients get significant relief once the cause is identified and treated. If the itching is severe or keeping you awake at night, let your oncology team know—they can often prescribe something that helps while they investigate the underlying cause.

Thank you for taking the time for this thorough explanation. Hoping the Y 90 treatment will help!!

@billbo I had Class 3 itching while starting Afinitor. I managed it with Aveeno or Cetafil lotion., and really good hydration. I also had it when I was initially diagnosed with liver mets and it improved with treatment.

@billbo I also had severe itching with liver mets that greatly decreased with treatment.

@tomrennie What was your treatment? Thx.

@billbo I had 13 cycles of CAPTEM which is capecitabine and temozolomide. For me, each cycle was 14 days on and 14 days off. I only took the temozolomide the last five days of a cycle. They reduced the size of my pancreatic tumor and my largest liver lesions about 50%. They also greatly reduced the number of my liver and bone lesions. After the 13 cycles, I have been on the same cycle but only with a reduced amount of capecitabine. I still take it to this day. Everything has remained relatively stable. Let me know, if you have any questions.

@tomrennie Thx so much for the info. I'm not at the chemo level yet but they will introduce radioactive beads into areas of my liver. Hopefully this will help with the itch!!

@billbo Are you having Y-90? Forgive my memory, but you have PNETs that spread to your liver correct?