Hi all,
I’m trying to understand if or how myeloma may affect the liver. Long story short - EJ was diagnosed with multiple myeloma when he had emergency surgery for a ruptured diverticulitis. At the same time, he also developed jaundice. We were eventually told that he had Gilbert’s Syndrome which means he has a naturally elevated level of bilirubin. Two weeks ago he wasn’t feeling well, and he was itching all over. He went to his GP who ordered a full panel of blood tests. His Bilirubin, AST and ALT are all elevated, and his GP has ordered an ultrasound of his abdomen.
EJ had a SCT last summer and achieved CR and has been doing well ever since. I brought up the Gilbert’s during his pre SCT work up, and I know that they tested for hepatitis (the tests were negative). EJ doesn’t drink much (two or three beers a month). Currently he is just on once a month Zometa.
I’ve never been comfortable with the Gilbert’s Syndrome diagnosis. From what I understand, Gilbert’s is a hereditary disease, and EJ was 53. You’d think it would have been diagnosed long before now!
My question is this – could the myeloma be causing problems with his liver? Also, does anyone else have Gilbert’s and if so what do I need to be concerned about?
Thanks. I really appreciate your responses.
Lyn
Forums
6 posts
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Gilbert’s syndrome and liver problems
Hi Lyn!
In subacute liver failure (SALF), hepatic encephalopathy occurs between 28 days and 72 days after the onset of jaundice. Sounds like this may have occurred with the diverticulitis. Also the light chains of myeloma can infilitrate the liver and cause hepatitis. Typically the patient has an distended abdomen.
You likely will need to ask the physician, about the Gilbert's possibly being a misdiagnosis, and if the liver issues are the multiple myeloma cells setting up shop in the liver.
Does EJ use Zometa?
There is information on granulomatous liver with multiple myeloma at this link:
http://www.ehealthme.com/cs/multiple+myeloma/granulomatous+liver+disease
In subacute liver failure (SALF), hepatic encephalopathy occurs between 28 days and 72 days after the onset of jaundice. Sounds like this may have occurred with the diverticulitis. Also the light chains of myeloma can infilitrate the liver and cause hepatitis. Typically the patient has an distended abdomen.
You likely will need to ask the physician, about the Gilbert's possibly being a misdiagnosis, and if the liver issues are the multiple myeloma cells setting up shop in the liver.
Does EJ use Zometa?
There is information on granulomatous liver with multiple myeloma at this link:
http://www.ehealthme.com/cs/multiple+myeloma/granulomatous+liver+disease
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Gilbert’s syndrome and liver problems
Thanks, Susierose --
I am worried that it is "myeloma setting up shop in his liver," as you put it. The docs have told EJ that he was probably smoldering for a while before he devloped multiple myeloma. I'm worried that they have been comfortably setting up shop there for a while. Do you know if this is "amlyodosis" (excuse my spelling)?
EJ's next appointment with his onc is in a few weeks. Although his M-spike has been hovering around 0, I'm worried that this is a sign it is returning.
Lyn
I am worried that it is "myeloma setting up shop in his liver," as you put it. The docs have told EJ that he was probably smoldering for a while before he devloped multiple myeloma. I'm worried that they have been comfortably setting up shop there for a while. Do you know if this is "amlyodosis" (excuse my spelling)?
EJ's next appointment with his onc is in a few weeks. Although his M-spike has been hovering around 0, I'm worried that this is a sign it is returning.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Gilbert’s syndrome and liver problems
Dear Christa's Mom,
Gilbert's syndrome typically makes the bilirubin go up but not the other liver tests (AST, ALT). As such, further evaluation is warranted and imaging is a good way to start. Amyloidosis, which is a scenario where the antibodies produced by the myeloma deposit in various organs, could do this. But, in my experience, when amlyoidosis affects the liver, it is not a subtle diagnosis. In other words, other organs are also struggling (kidney problems, including lots of protein in the urine, heart failure, neuropathy not due to chemotherapy, diarrhea from GI tract involvement). Also, if the myeloma responded well to treatment, I would be a bit surprised if this represented myeloma infiltrating the liver (although this does occur, typically in high risk patients, especially those with other documented sites of extramedullary disease). The most likely explanation would be a medicine that EJ is taking (e.g. is EJ on a statin for cholestrol problems?). Also, "fatty liver" or steatohepatitis is a diagnosis that is quite common -- they might be able to identify fatty changes of the liver with the ultrasound test.
I would query the myeloma doctor about any signs or concerns of amyloidosis at the next visit, either now or at initial diagnosis. I would scour the medications for any potential culprits, including over the counters, herbals, etc. If the ultrasound comes back uninformative, additional imaging may be of value if there is any concern that this could represent myeloma (again, with an M spike of nearly 0, I think this is less likely). Lastly, a visit with a liver specialist (hepatologist) may be an order.
Let us know how things go. Good luck!
Pete V.
Gilbert's syndrome typically makes the bilirubin go up but not the other liver tests (AST, ALT). As such, further evaluation is warranted and imaging is a good way to start. Amyloidosis, which is a scenario where the antibodies produced by the myeloma deposit in various organs, could do this. But, in my experience, when amlyoidosis affects the liver, it is not a subtle diagnosis. In other words, other organs are also struggling (kidney problems, including lots of protein in the urine, heart failure, neuropathy not due to chemotherapy, diarrhea from GI tract involvement). Also, if the myeloma responded well to treatment, I would be a bit surprised if this represented myeloma infiltrating the liver (although this does occur, typically in high risk patients, especially those with other documented sites of extramedullary disease). The most likely explanation would be a medicine that EJ is taking (e.g. is EJ on a statin for cholestrol problems?). Also, "fatty liver" or steatohepatitis is a diagnosis that is quite common -- they might be able to identify fatty changes of the liver with the ultrasound test.
I would query the myeloma doctor about any signs or concerns of amyloidosis at the next visit, either now or at initial diagnosis. I would scour the medications for any potential culprits, including over the counters, herbals, etc. If the ultrasound comes back uninformative, additional imaging may be of value if there is any concern that this could represent myeloma (again, with an M spike of nearly 0, I think this is less likely). Lastly, a visit with a liver specialist (hepatologist) may be an order.
Let us know how things go. Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Gilbert’s syndrome and liver problems
Dr. V --
Thank you very much for your response. You've given us someplace to start when we talk to the doc. EJ isn't taking any perscribed medicines at the moment, but I would not be surprised if he took something for an upset stomach that could have affected the tests. We'll let you know what happend!
Lyn
Thank you very much for your response. You've given us someplace to start when we talk to the doc. EJ isn't taking any perscribed medicines at the moment, but I would not be surprised if he took something for an upset stomach that could have affected the tests. We'll let you know what happend!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Gilbert’s syndrome and liver problems
Just a follow-up....
EJ got his results back from his ultra sound and his repeat blood tests. His liver was not enlarged and everything, including his biliruben is back in the normal range. The doc wants to repeat the blood tests again in a month, just to make sure. The culprit may have been some OTC meds.
I'm still not comfortable with the Gilbert's diagnosis, and next time his liver acts up it may be time to see a hepatologist. In the meantime, I'm just going to watch what OTC meds he's taking.
Thank you all for your help. I can't tell you how much I appreciate all of the good folks on this site.
Lyn
EJ got his results back from his ultra sound and his repeat blood tests. His liver was not enlarged and everything, including his biliruben is back in the normal range. The doc wants to repeat the blood tests again in a month, just to make sure. The culprit may have been some OTC meds.
I'm still not comfortable with the Gilbert's diagnosis, and next time his liver acts up it may be time to see a hepatologist. In the meantime, I'm just going to watch what OTC meds he's taking.
Thank you all for your help. I can't tell you how much I appreciate all of the good folks on this site.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
6 posts
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