One step back, yet again! Chemo cancelled

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  • #39193
    andie
    Spectator

    Hi Rick,

    The doctors at both our hospitals like the level to be 50 before they will do chemo but they have said they may discuss giving my dad a lower dose chemo. We have to wait till Wednesday when we meet with the Oncologist to find out more.

    I’m sorry I don’t have any other test results as when the nurse phoned to say he wouldn’t be having chemo she said it was due to his bilirubin levels and dad didn’t think about asking about anything else.

    I will find out what antibiotics he is on when I see him tomorrow. I know he is taking 2 x 250mg a day as the doctor recommended a low dose.

    He had his metal stent fitted April.

    Thank you for all your help, it’s been great having someone to explain it to me and give advice. I am an only child and having to be very strong for both my mom and dad, and also fight most of his CC battles as at the local hospital they at times can be less than positive. Our local Liver hospital is great but the chemo is given at the local hopsital.

    Best Wishes

    #39192
    rick-kamp
    Member

    Andie,

    I am suprised that your Dad’s Onc isn’t letting him have the chemo at this level – unless there is something else going on with his liver. Do you have other liver function test levels you could post such as ALT, AST, ALk Phos, and Albumin? If these are all relatively normal, it would mean that his liver isn’t really in distress and it should be safe to do Chemo. But maybe the Onc is being extra careful.

    Also – what antibiotic and dose is your dad taking? If it is Cholangitis, Ciproflaxin 2 X 500mg/daily is the usual treatment. And it is safe to take longer term if needed.

    One last question – how long has he had the metal stents in? This was the cause of most of my infections/cholangitis as the tissue (not necessarily tumor) grows through the wire mesh in time and blocks/occludes the stent. By the time I decided I needed to have it looked at (bilirubin went to a high of 2.9), both of my stents were blocked. Wow did I feel better after that was cleaned out. It had been about 8-9 months since they were installed. So – this is something to keep an eye on also.

    Lastly – Kathy I’ll look into posting an easy conversion tool for us all to use soon. I just did that match quickly but it is more involved to explain.

    Best wishes.

    Rick

    #39191
    kathyb
    Member

    Thanks Rick, for explaining this. I do remember that you are a man of science and a man of faith.

    Kathy

    Not really being a woman of math, is there a simple formal to convert micromoles per liter to the US lab standards of mg/dl? Maybe not.

    #39190
    andie
    Spectator

    Hi Rick,

    Thank you so much for your information and kind words.

    My Dad started antibiotics Thursday morning in preperation for his Chemo. The doctor had advised he be on a low dose whilst on chemo to try and help avoid any infections especially as he has a metal stent.

    Thursday night they phoned to say his bilirubin was too high but advised to keep taking the antibiotics incase it was an infection. I’m keeping everything crossed they are back to normal next Wednesday and treatment can start. Dad had built himself up for the chemo so was on a real downer but he seems more positive about it today.

    Best wishes

    #39189
    marions
    Moderator

    Thanks Rick….you have a wonderful way about you. I have learned much from reading your post.
    Thanks again,
    best wishes,
    Marion

    #39188
    rick-kamp
    Member

    Yes, the UK standards for bilirubin are different. The “in range” values are between 3 and 17 micromoles per liter, which is quite different from the US at .1-1.3 mg/dl. So, converting the bilirubin of Andie’s Dad to the US lab standards he would be at roughly 5.7mg/dl. At this level, it might even be difficult to detect yellowing in the skin or eyes, especially if it is moving up and accumulating.

    It sounds like your Dad is on antibiotics, could this possibly be for Cholangitis? When the bile ducts become infected it is called cholangitis and it almost always raises the value of the bilirubin. I’ve had this occur to me at least 3 times in the last 5 months but to stent issues and each time it has come down within a couple of weeks with antibiotics. Hopefully this is the case with your Dad and within another week he will be back on track. I think I lost 1 week of chemo due to this, which was a welcome break anyways.

    Best of luck to you and your Dad, Andie. I hope to hear that his bilirubin levels have come down the next update you give. Sending healing prayers your way!

    Rick

    #39187
    kathyb
    Member

    I looked at the above site. Under “blood levels” it lists the normal mg levels at low ranges such as 0.1-1.2. It does state, “Different sources provide reference ranges which are similar but not identical.” It gives the source for each of the 3 standards which are all low. I think this may be a US site.

    But I still do not understand. Do parts of the UK use a different measuring method than the US? This web site from the UK says about the same: http://www.ehow.co.uk/about_5499686_normal-liver-function-test-results.html

    #39186
    marions
    Moderator

    Although, not easily understood by a layperson it does describe in detail the function and disfunction derived from elevated bilirubin levels:
    http://en.wikipedia.org/wiki/Bilirubin
    From what I understand certain medications can increase the levels, amongst other things. Hopefully, someone can come along and give us a good lesson on this.
    I have also been told that an elevated bilirubin level may not necessarily be a reason for alarm. The body may simply regulate itself. As we have experienced many times…it becomes a waiting game.
    Best to all,
    Marion

    #39185
    andie
    Spectator

    Kathyb,

    I’m not sure about the level markings, perhaps the UK use a different system as I know another member from the UK mentioned bilirubin levels above 50 too.

    When My Dad started to be really jaundiced the bilirubin levels were in the 100s, at the worst 600. After his stent they fell to 185 but since then he didn’t have any follow up bloods.

    In the UK Chemo can’t start unless bilirubin level is 50 or below. At the moment Dads not got any dark urine or itching, nor yellowness.

    Hopefully someone will be able to explain this as I would like to know too.

    Fo the meantime he has been advised to take antibiotics prescribed for his Chemo and hopefully this will help if it’s an infection, if not blood will be done wednesday, if it’s ok chemo will start friday, if not pct to check and possible clean stent.

    Best wishes

    #39184
    kathyb
    Member

    I don’t understand the bilirubin levels, “Last week they were 45, and this week they are 75. So in one week they have increased by 30.”

    My lab sheet says Total Bilirubin reference range is 0.1-1.0, and Direct Bilirubin is 0.0-0.3. It does say mg/dl after these on my lab sheet, so perhaps a different measurement is being used?

    I hope someone can explain this to me, because I can’t get into context. I know we all experience things differently, but how could it not darken your urine? It’s got to get out somehow.

    Thanks,
    Kathy

    #39183
    jemima
    Member

    Hi Andie

    Sorry to hear this about your Dad. It must be so disheartening to feel that things are not progressing and that there is no obvious reason. I am keeping my fingers crossed for you both that his level drops quickly and that he can start on the chemo soon.

    Jemima

    #39182
    andie
    Spectator

    My Dad has a metal stent which they fiited via PCT. He had a EUS 3 weeks back and nothing had changed. Dad was badly jaundiced in Feb and at one point his bilirubin was 600+ . His eyes at the moment are clear. The local hospital, where he will have his chemo just want to wait and see if it puts itself right as it may be an infection and Dad is on antibiotics at the moment for his Chemo, but we don’t want to wait till next Wed so dad is phoning the liver hospital today for their advice.

    #39181
    mlepp0416
    Spectator

    Andie: When my husband Tom was diagnosed with his inoperable tumor in late Nov ’09 he had just started turning yellow. The first place it is noticable is in the eyes. The whites of the eye turn yellow before anything else. At one point his bilirubin level was 24.7. Tom was lucky in the aspect that he had no itching and no brain confusion. They wanted to get a internal stent into the liver, but to date that has not been possible, so instead he has an external drain to drain off the bile that can’t get past the tumor.

    You are correct, that this CC is like a roller coaster ride. You will have many hills to climb and many twists and turns in this journey.

    You should ask for a CTscan or an MRI and that should show if there is a tumor blocking the bile duct. Then perhaps an ERCP is in order to see if they can place a stent which would then allow the bile to flow into the intestine. That should help lower the bilirubin level.

    You may also want to seek a 2nd opinon if you are not getting the answers you seek.

    Go with God, and KEEP KICKIN’ THAT cancer.

    Margaret (My husband and Cholangiocarcinoma)

    #3674
    andie
    Spectator

    After building himself up for his Chemo to start tomorrow my Dad has just had a call to say his Bilirubin levels are too high. Last week they were 45, and this week they are 75. So in one week they have increased by 30.

    Does anyone know why this could have happened. He doesn’t look jaundiced and he said his urine is fine and he’s not itching. We are worried now that the tumour has grown.

    He has an apointment Wednesday to see the oncologist as they may do a lower dose chemo.

    More sleepless nights. We are certainly having a rollercoaster of a time this last few weeks.

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