Elevated bilirubin - need encouragement

saralmom

I finished chemo at the end of August and started radiation last week.  Everything has been going along fine - needed an iron infusion during the summer - but basically no major problems with treatment.  Had ACx4 and Taxolx12 and am on Herceptin til next June.

I got a call from the nurse at my oncs office yesterday saying that my enzymes have been creeping up lately, and the onc wants me to have an US and see a liver specialist.  I asked if this is b/c they are concerned about mets, and she assured me that no, it was probably a reaction to the chemo.

So then I went online (kiss of death) and everything about elevated enzymes and US that I find relates to the discovery of mets.  My husband was concerned about my stress level, and called the onc.  She said that no, my enzymes aren't elevated, it's increased bilirubin (says her nurse said it wrong) and that it's been an issue for me all along, but now that I'm done with chemo they want to figure it all out.  She said she "is confident that it's not related to cancer" but just something my body does.  She then called me this morning to tell me all of this too - she's pretty awesome for doing that.

But of course I am still obsessed with mets. I have just started to feel normal again, and saw the light at the end of the tunnel and now this. I'm waiting for the order for the US and I have an appointment with the GI guy on Monday.

Can anyone make me feel better about this?  Please...

Sara 

mmm5

Sara

First I would believe your ONC> It would be very very rare for you to grow liver METS while on Herceptin for your initial treatment, You can read all over the boards where women who were actually dxed stage V initially and they get their Herceptin and their enzymes are going down.

I would agree this has something to do with your reaction to the chemo. I have had all kinds of elevated markers during chemo and after and still do and I do not have Mets.

Did you have initial scans prior to treatment or any tumor markers done? If they were all normal I would say that that is again a signal that the chemo brings elevations down of most markers upon initial treatment.

We all worry about these things and most of the time it is some other explanation, I understand where you are at, I have had at least 15 big worries since diagnoses ranging from blood tests or aches and pains....so far knock on wood all have been other things.

Believe that you are OK 

sheila888

Hi Sara....My liver enzymes were all over the place during chemo.

My DR said its a normal reaction during chemo.

I also had 4x A/C and 4x Taxol every 2 weeks.

I took Herceptin for a year and everything went back to normal. This was my experience. I dont really understand medical terms between High liver enzymes and Elevated Bilirubin.

Hugs

Sheila

florencedonna

Hello Sara,

 You should google gilbert syndrome.

it is a common, harmless, genetically based elevation in bilirubin.

 also, you should ask the GI guy about it.

I FREAKED when my oncologist called about mild elevated LFT's (five years ago).  I didn't have mets, most likely a little irritation from the chemo.

 Good Luck

saralmom

Thanks for the support everyone.  Nice to hear about liver enzymes fluctuating and not causing worry.

I saw the GI on Monday morning, and both he and the PA looked at my numbers and said they seem normal to them.  The enzyme which can indicate tumor growth (so dumb that I didn't take notes) is totally normal.  And the bilirubin was only slightly elevated and has been normal until now.  It is 1.6 and he said normal is 1.3-1.4 and people with actual elevations present with a 3.0-6.0.  S I am feeling better about that.  They took more blood to check for anything else like Hepatitis, and suggested Gilberts syndrome as the culprit here.

I have the ultrasound today at 2 pm.  I am dreading it.  Even with the doctors all saying I seem okay, I can't shake the feeling that my liver is full of mets.  I feel OCD about it.  I can't stop looking it all up on the internet.  I am now convinced I have pain under my ribs.  I just want to know there is nothing there, but then I think, isn't that what everyone who DOES have mets thinks right before they find out they have mets?  Why not me?  Trying to be positive but really failing at it. 

squidwitch42

Lots of reasons for bilirubin to be elevated, and yours is ever so slightly. Trust that this can absolutely be a B9 condition. Take a deep breath and hear what you Onc said again, she is confident it is not related to Cancer.  I have faith for you.

squidwitch42

oh, and the liver is a fabulous little organ (not as attractive as say....the heart) and is extremely resillient. This is a case of brains before beauty It really is quite marvelous at working itself out and recovering.  Just a little ode to the liver this morning...

saralmom

Just talked to onc - saw her in the hospital after I finished radiation - and she saw how upset I was about my ultrasound results - so she stood in the hallway and pulled the results up on her laptop right then and there.  Ultrasound normal.  Entire abdomen.  I am very relieved.  So the verdict is - Gilberts Syndrome.  Totally benign pointless elevation of bilirubin that 7% of the population has.  

saralmom

By the way - excellent call florencedonna!!

squidwitch42

wonderful news   I bet you need to take a nap now...take good care, and happy happy for you.

Traci

weety

saralmom,

Hi, I'm curious as to whether you've gotten any more info on the elevated bilirubin or gilbert's syndrome.  My bilirubin has been slowly increasing and is now at 1.0 (which my onc said is the highest end of normal.)  It makes me nervous, too, even though it's sitll considered "Normal" because it has been going up over the last year from .6 and .7 to .9 and now 1.0.  All of my other liver enzymes seem okay and well within the normal limits.

I'm wondering if Gilbert's syndrome is something you are born with??? Or can it develop over time or from stress on the liver because of all these meds we're on?  Also, I read that increased levels of bilirubin could be caused by premature death of the red blood cells (I think it was called hemolysis)  Does anyone know if this is bad?  Or could it be a side effect left over from chemo or herceptin (I just got my last herceptin last week.)