questions about liver or bone mets symptoms

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Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
I have a question for those of you with liver involvement - in particular if you had a recurrence or progression that moved to the liver. Or if you had bone mets.

Did any of you have the following:
►Nausea - a lot like morning sickness - worse in the AM and popping up here and there throughout the day - but also worse with exertion and/or abdominal pain (sometimes it just hits out of the blue, along with sweats and worry that I will vomit)
►Fatigue
►Itching - gets worse at night - scalp, arms, trunk, legs, feet, back and often the worst is my butt! Hands don't itch much, but kind of get a tingle/burning pain now and then - a bit like neuropathy, but not quite - no numbness.
►Pain - above belly button by a few inches - center upper abdominal
►Pain - right shoulder (severe), and right back shoulder blade (mild) and right kidney area (comes and goes)
►Feeling bloated and pressure in abdomen - (feels a little like when a baby is growing, especially under right at the bottom of the ribcage)
►Upper abdominal pain if I strain a lot to move my bowels. Not like anything I've ever had before - not the same as when I had an obstructing sigmoid tumor. Not cramping pain, and much higher.

All of these have gotten slowly worse during the last 2 months - barely an issue 2 months ago, but affecting quality of life now - to the point I can't ignore them anymore. I can't stop scratching all the time, and feel overall crappy between the nausea and abdominal pain and bloating.

After my labs, I researched and found that when ALP is elevated, some symptoms can be fatigue & weakness, nausea, vomiting (so far no vomiting, but I've been close), itching, dark urine and light color stool. (Cloudy, but not dark urine for me, and floaters in my stool, but seem normal in color.)

My numbers are not that high above normal, but they are very high for me. It is a huge increase over my normal, but only slightly over guideline. My oncologist says that my itching and other problems are only found in people with much higher levels than mine, and with bilirubin elevated too. I never suspected anything to do with my liver until finding out my ALP, researching and reading the symptoms I've been complaining about for a while now. With my rising CEA, I expected a few more distant node mets in my whack-a-mole game. (To be truthful, I'd prefer one little resectable liver met - so it can actually be cut out, and the liver can regenerate, over multiple distant nodes again.)

Now the weird thing is my bilirubin, AST and ALT are normal. Generally with mets to the liver the others are elevated too - especially bilirubin. The only conditions I've found where that applies is with a bone issue - Paget's or cancer spread to bones. But if GGT is elevated too, it is usually liver disease. I don't know what my GGT is. The only bone that really hurts is my right shoulder - it is awful. It hurts all the time, whether I am using it or not. The chiropractor was able to assist me with mobility for the shoulder and many other areas of my body, but nothing has helped the pain. Weird, weird, weird... I didn't do anything to injure it either.

I know I'll have more answers after my scan next week, but I hadn't remembered anyone posting any symptoms they had with liver involvement - just our symptoms of initial colon or rectal cancer mostly. And the only thing I remember of anyone with bone involvement was bone pain. Anyone with bone involvement have elevated ALP with these symptoms?

I'm not realistically holding out hope for pancreatitis - not with all the other issues on top of the abdominal pain...

At least maybe I can lose some of the guilt I've had this summer over not getting big projects done that I meant to do, if there turns out to be a medical explanation. I've been getting more and more fatigued and just can't summon the energy to get things started. I have to really push myself to do anything at all. That is not normal for me. Pre-cancer I was the energizer bunny, so this drives me INSANE! I sleep 10 hours a night instead of my old 4-6. And I am still tired. If I sleep less than 8-10, I can barely function the next day and want to nap (I am not a napper). I've been beating myself up mentally every day over not getting more done - especially because I've been on a treatment break, and this is my chance to get everything caught up and in order. I had more energy last winter than I have this summer, and I was expecting to slowly get better, not worse.

Comments

  • janie1
    janie1 Member Posts: 753 Member
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    Kathryn......i just typed a
    Kathryn......i just typed a whole bunch here.....and lost it, so here is an abbreviated form.....sort of

    I had about 15 small tumors in the liver, but the liver enzymes were never elevated. I think others, too, have had the same experience.
    Mine are elevated now though... First I had liver surgery in January, then ablations to the liver on 2 separate occasions since. I also have an HAI pump, so between the surgery, ablations, and chemo directly to the liver, this is probably the cause of the elevations now.

    I also gave up alcohol which I thought would be agonizing, but it really wasn't. I wanted to focus on beating this crap.

    I now have a lymph node by the liver that I am having radiated 5x next week. The lymph node lighting up was not what I wanted to hear.

    ( Then, I am going to NH to a friend's lake house and seriously kick back. It has been a bad couple of weeks. )

    I am like you, i can't stand chemo. I don't even think it's working anymore. I am tired of the same old research going on. How many Avastins do we need. Well, i guess the pharm companies all want a piece of the pie. And, don't they rule. Seems like no one has any backbone. Maybe I'm overly cynical, but all I see is greed, and no ethics.

    On you being the "energizer bunny", I had tried to write a lot about "slowing down". I downsized before I was even diagnosed. I was tired of being stressed over "things and stuff and projects". Who cares.....NOBODY. You need to focus on healing. I know it's easier said than done, but it helps to bring new people into your life to help you relax your mind and body. Stress increases cortisol, and we all know the damage that does.

    Aside from my usual thoughts on big pharma (and even the FDA), I think about this a lot. I mentioned it before, but the CEO of MD Anderson was on 60 minutes or Dateline about 6 months ago. He said he believes there will be a cure. He then said, and if it doesn't happen during his tenure, then he will view his leadership as a failure.
    Sounds good, hope it happens soon.

    -j-
  • here4lfe
    here4lfe Member Posts: 306 Member
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    Yes
    I don't know about morning sickness, but nausea, bloating, pain, my wife has them all. Liver mets and elsewhere. I don't know what her liver enzymes are, she just started Erbitux.

    Please stay on top of the pain. There is no Gold Medal for pain and suffering.

    Best
  • luvinlife2
    luvinlife2 Member Posts: 172 Member
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    Kathryn.....:)
    I luv ya!!! I know you are worried and probably p'd off about the numbers. WAIT for the CT scan before you panic. I thought I was progressing and had a fantastic scan. You never know for sure. So your numbers are going up....mine did too and who'd a thunk...despite my usually accurate numbers, the scan showed regression! The good Lord is in control and only He knows when it is your time. I know you are a believer..... believe...trust.

    hugs....:)
  • steveandnat
    steveandnat Member Posts: 886
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    side effects stink
    Sounds like a lot of side effects kicking in. It could be your body rejecting some of the chemo too. Hopefully the scans will shear some light on your problems. Praying for you. Jeff
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
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    LDH
    Kathryn, LDH is a liver test parameter that might be informative.
  • taraHK
    taraHK Member Posts: 1,952 Member
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    bone mets too
    When I was diagnosed with bone mets (multiple -- spine, hips) I had no symptoms at all -- no pain, no elevated blood counts. Just found on a routine scan (surprise!). I remained symptom free for 1.5 years. Then I started to have symptoms from one of the mets in my left hip -- not so much bone pain, but pain radiating down my leg. I had radiation for that, and now it's fine. I get occasional "discomfort" (not really pain) for which I take pain meds.

    Wishing all good things for you

    Tara
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
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    taraHK said:

    bone mets too
    When I was diagnosed with bone mets (multiple -- spine, hips) I had no symptoms at all -- no pain, no elevated blood counts. Just found on a routine scan (surprise!). I remained symptom free for 1.5 years. Then I started to have symptoms from one of the mets in my left hip -- not so much bone pain, but pain radiating down my leg. I had radiation for that, and now it's fine. I get occasional "discomfort" (not really pain) for which I take pain meds.

    Wishing all good things for you

    Tara

    Kathryn....my oncologist
    Kathryn....my oncologist orders a calcium marker of some sort with my blood work, I have seen it requested separately with the CEA....I was told this could be used as a marker to show bone mets.