Elevated Bilirubin ?

[brison2]

Has anyone with CLL plus P17 deletion ever had their bilirubin elevated ?

[Kwenda]

I have a high Bilirubin level and CLL, but as far as I know not the 17p deletion.

The last FISH test was some years ago but recent blood work gives no indication that my 13q del has suddenly altered.

My high Bilirubin level I can control by diet. The liver does process spices and herbs from our diet, and a no spice or herb diet enables me to get the Bilirubin level down to an almost ‘normal’ level.

High Bilirubin or Gilbert's syndrome, also known as constitutional hepatic dysfunction and familial nonhemolytic jaundice, is something many are born with, as a result of an inherited gene mutation. Often patients do not know they have the condition until they have a blood test. I have not read of any linkage to my CLL.

Dick

[brison2 in reply to Kwenda]

Thanks for your reply. My sister in law is the one with CLL 17P deletion mutated. I am trying to reach out to any info that I can get for her.

[Elle_V in reply to Kwenda]

Hi Kwenda,I started Ibrutinib just over 2 years ago and since then my bilirubin has slowly been increasing. It started at around 8 and now it's at 18. All other bloodwork is normal. I did a quick search on the internet about what spices one should avoid with high bilirubin but couldn't find anything. The 2 spices I use almost every day is cinnamon and a bit of nutmeg in my morning oatmeal. Could these be the culprit? Is there a list somewhere that you know of that I can refer to? I will cut all spices out to see what happens. I will ask my hematologist about it at my next appointment as well.

Cheers,

Elle

[Justasheet1 in reply to Elle_V]

Hi Elle,

Just thought that I’d mention that you replied to a 4 year old post. 🍻

Jeff

[Elle_V in reply to Justasheet1]

Hi Jeff, Yes, I knew that, thanks for the heads up 😀 I'm hoping Kwenda will get a notification and will answer. If not, I will send a private message.

[Kwenda in reply to Elle_V]

Hi Elle, apologies for the slow reply, I was away from my desk for a couple of days.The bilirubin levels you quoted are not as high as I was experiencing. Mine were four or five times the figures you show, such that the doctors first looked for jaundice.

I have never done a test to see which spices cause the problem, I just eliminated ALL spices and herbs, and this works for myself.

In my case I suspect that the condition is genetic in that my mother was also affected by spices, refused to eat curry and never used pepper.

As result I grew up in a household where spices were never used, and it was only that a few years ago after moving to live in Europe and suddenly my meals contained lots of spices that I was not used to having in my diet.

Sorry that I cannot assist further.

[Elle_V in reply to Kwenda]

I only posted yesterday so not a late reply 😃. Thank you for your information, it helps. I will ask my hematologist about it next time I see him. I was/am worried that I would eventually have to stop the Ibrutinib that I am on.

[Spacee]

Hubby has 17p deletion but bilirubin is ok. Thanks for bringing up the topic and Kwenda, we will avoid spices if it goes up. Best to all.

[marcyh]

I have del17p and at times my bilirubin goes slightly out of range. My hematologist isn't concerned. I'm an unusual CLL case - had it 12 years and counts are stable, no treatment. Very grateful.

marcyh

[Hoffy64 in reply to marcyh]

Are you Mutated? Or unmutated IVHG?

[marcyh in reply to Hoffy64]

I don't know; that test isn't available in Canada - yet. We're told maybe in the next year. Then I'd like to have it done.

[brison2 in reply to Hoffy64]

It is for my sister in law she is Mutated

[brison2 in reply to Hoffy64]

Thanks for your reply. My sister in law is the one with CLL 17P deletion mutated. I am trying to reach out to any info that I can get for her.

[Hoffy64]

I am 17P deleted and have always had high bilirubin. Gilbert's syndrome. Usually great than 2 but now above 3 on treatment with I plus V. My Doctor did other tests and said it is OK. There are different bilirubin tests that can be done,

[brison2 in reply to Hoffy64]

Thanks for your reply. My sister in law is the one with CLL 17P deletion mutated. I am trying to reach out to any info that I can get for her.

[SofiaDeo]

My bilirubin went up a bit from normal after starting Venclexta. Our lab range is 0.2-1.3, my last lab was 1.5. My range since treatment started is 0.5 (about a month after induction) to 1.5. It was running around 0.6 pre induction. My disease genetics are del 17p, as well as TP53, plus del 13q. So it's elevated, but not much.

It has dipped back to normal once since my induction last January, then back up. And my liver enzymes have not moved up at all. The doc told me, slight elevation alone (with no signs/symptoms like liver involvement, or possible gallbladder pain, etc.) probably isn't clinically significant. I haven't had any genetics done to rule out Gilberts or another mutation possibly causing this.