Liver Levels up? What next!!!

[Chelee]

I found out the HARD way from my new oncologist that I thought I could trust...that she too isn't being to upfront with me.

Today I was trying to get information out of her...its like pulling teeth it seems. Its my body..I have a RIGHT to know everything...good or bad!

She tells me that my liver enzymes have been running a little high at 60...but she said thats not bad. (I would have no idea?) I think she said it should be around 40 or 45?

But then she goes on to tell me...that one 5-1-06 when I came in for my lab work...and had a FULL CYCLE infusion of my herceptin, Taxotere, & Carbpotin that my liver was UP to 147 which concerned her...but for me NOT to worry.

She KNEW back on May 1st BEFORE my chemo what my lab work was. WHY didn't she tell me them how HIGH it was? And WHY did she go ahead and let me get the Taxotere and all that????

I am angry enough just knowing my liver enzymes have been up to 60 without her telling me ALL THIS TIME.

Does anyone KNOW WHY my liver would be up at 147? Is that going to go down...or will it be permanet damage that won't improve...or what? They LOVE stressing me out. I think they can't wait to kill me off as fast as possible. I was JUST beginning to LIKE this NEW oncologist. Now it seems like she is just like my first one...they HIDE things from me.

Anyone else have elavated liver numbers out of range that bad? What would or can cause it? Does that mean my chemo is over now. :(

Chelee

[jhandley]

You are getting a really good combo of treatment. The good news is that your enzymes have decreased with the treatment. Time to get worried is when they keep going up into the high hundreds/thousands despite treatment. Hang in there.
What is your diagnosis at present?
Jackie

[cosmicdust]

Liver functions (blood work) are best if fasting before test...factor changes to foods eaten before test - did you fast? U can find info about liver tests online that lists the norms for them...i had 1.8" dia tumor in liver now shrunk to .7" (>50% smaller) so I watch my bilirubin and liver tests closely.

[MJo]

My liver functions went up and down before I got cancer. Doctors tested me for different things, but I checked out fine. It could be your body at work.

[AlaskaAngel]

Chelee,

For those who have been fairly healthy most of their lives, having treatment is hard to get used to. The "norm" is that patients are not generally told what their exact lab results are. The "norm" is that we all have to continually ask, and request copies. I personally think this is more harmful than good. I understand why medical providers need to see the results before we do so that they can have time to put them all together and interpret them and design a plan to deal with them, but in my opinion it should be legally required that we be sent a copy of each one within a logical time, say 2 weeks after each test. We have paid for them, and even if the postage or having staff send them by e-mail would cost something, I still think it makes more sense in this day and age and would do the best job of protecting us.

But that isn't yet the way it is....

Some medical systems are working toward providing the patient with online direct access to their medical records. Let's hope that becomes the "norm".

Even though having to track everything and figure out what is abnormal and what is normal gets pretty overwhelming sometimes, at least over time you end up with a better feel for what's what. And whether we like it or not we are in this mess for the rest of whatever life we have, so the sooner you start learning about your own "normal" ranges the more ability you have to do something about them.

With some lab tests, hardly any rise at all can be really important. But when it comes to liver enzymes and having chemotherapy the kind of rise you are seeing usually isn't. If you have a huge rise it might, but yours isn't huge. If there is a consistent pattern of abnormal readings that continues after treatment, or if there is a huge rise, then there would be more reason for concern by you and your providers.

A.A.

[Barbara]

Hi:

Nuelasta can cause elevated liver enzymes; in my case both liver enzymes, alkaline phosphatase and CA 27-29 all went way above normal levels when I was on Taxol and Nuelasta. This apparently happens in about 17% of all chemo patients. All levels returned to normal within six weeks of completing chemo.


Barb

[Becky]

The taxanes can take a toll on the liver enzymes for some people.


Secondly, make sure you ASK for and GET copies of all your bloodwork/results.

I do so that I have them in a file and can compare quarter to quarter my liver enzymes and CA 27/29 as well as my lymphs and monocytes. I have a running chart so I can "see" the chaotic nature of my results and the steadiness of other results.

You should be able to get the information you want on yourself. Just be very direct with your onc on what you want and expect. If you explain your needs clearly, then you should get what you want and if you don't, then you can really throw a fit.

Don't worry about the enzymes now because the chemo and WBC boosters can play havoc with your liver.

Just finish up (you are over halfway there), then stabilize and you will probably see everything else stabilize too.

I am always thinking of you and I think many of us are. Remember we are with you even in the middle of the night.

Kindest regards

Becky

[al from Canada]

Chelee,

I wouldn't sweat the liver enzimes but if you are really concerned; get the onc to order a CT or ultra-sound of the liver.

Al

[Esther]

Chellee, when I was initially diagnosed with liver mets in Feb 04, my liver enzymes were sky high. With treatment they've gone to and stayed at normal levels since.

The liver is one organ that can regenerate itself, my liver was shutting down and in liver failure, and it is now functioning as a healthy liver would.

[michele u]

Chelee,

My liver enzymes fluctuate all the time. I'm 2 1/2 years out from tx. Mine go up to the 70's then are back down the next time. They can flutuate with chemo especially. Don't worry until they really go high, like thousands high. I think mine is the supplements i take. But i'm not going to stop them.

[Chelee]

Thanks to all of you as I am now much more relieved. Its just ridiculous my oncologists...the BOTH of them I have had....can't tell me anything & they CHOOSE to keep everything to themselves. It just makes me worry more in the LONG run when these things come out in the wash.

Ester, You mentioned your liver mets and your concern about your liver shutting down. That's what I was doing...except I see now I was ahead of myself...I thought maybe they permanetly damaged my liver. I see now from all the posts that is not the case. I was more concerned hearing about my liver enzymes were high because I HAD been telling my infusion nurse for WEEKS that it HURTS really bad where my liver is!

Becky, I did not know the taxanes were harder on the liver. Boy I learn SO MUCH more here then I could even come close to down at the cancer center. Becky, you mentioned that I should start asking for all the copies of these things. Funny you should mention that. :)

It was JUST today...I was thinking about HOW I have been handled by the oncologist since the day I was introduced to them. Just the fact of letting me LAND in the hospital when he KNEW my wbc for three weeks was low. I knew NOTHING about Neulasta...he DID..and CHOOSE not to give it to me. I almost DIED in the hospital thanks to him. I thought about alot of things today. I am DONE...ITS OVER. I am not going to be treated this way anymore.

So what I did JUST this morning when I got up is call the Radiologist Dept. to see if I could get a copy of my combo PET/CT scan that I have been asking BOTH my oncologist for since the day they received it in Feb. They WON'T let me see it! HA...I fooled them...the Radiologist Dept said what doctor wants to see it? I said, "I would like a copy for myself". She nicely said...when would you like to pick it up? (So easy!)

Then I typed out my own medical letters for two of my doctors requesting all my files, scans, results of all tests, x-rays, all lab work and you name it. I refuse to be ignored anymore...this is my life we are taking about.

I have to have lab work THIS Monday...then see my oncologist BEFORE my herceptin infusion. Wait till she sees me walk in her office with that PET/CT scan...she is going to freak out. Its a long story..but believe me...her and my first oncologist have done everyhing in their power to NOT let me see it for whatever reason...which does worry be a bit? But I NEED the truth about everything rather they like it or not.

Becky, its amazing how you and alot of other women have all their lab work and results of tests. All I every get, and I HAVE to push for it EACH week..and still do...is the sheet from my weekly CBC. Which doesn't have much on it as you know. Just the RBC, WBC, Hemagolbin, hemocrit, lymph, etc. I asked her the other day WHERE are ALL my results from ALL the scans and tests I had while I was layed up in the hospital are? She played dumb and said, "Didn't you get any of those"? I said NO. She gave me 3 sheets of paper. I should of had a good sized folder just from the 10 days in the hosptial. They work hard at keeping things away from me. But they have NO idea whats coming as of Monday. I am getting ALL MY RECORDS and then some.

I never get anything on my liver enzymes or CA 27-29. I don't even think she does that CA 27-29? If so...I have never seen mine.


>You should be able to get the information you want on yourself. Just be >very direct with your onc on what you want and expect. If you explain >your needs clearly, then you should get what you want and if you don't, >then you can really throw a fit<

Thats where I am NOW Becky. My 1st oncologist, & this new one understood without a shadow of a doubt what me & my husband expected. We said we want ALL my information. We disscused it several times in great lenght. So now I have given her more then a chance. First I thought she was just busy...but NO...she just has no intentions of letting us see any of my paper work IF she can help it. So now...I am going to make some noise. I am tired of being nice down there and getting stepped on. I am fighting for my life...I don't get 10 chances at this. Glad she thinks its a joke.
I have had such a rough time with all this since it started. None of this is easy for ANY of us women. But when you lose trust...and they hide and keep things from you...doesn't make this journey any easier.
Thanks for your on-going support Becky. This week I really have been an emotional wreck. Thanks for your kind words at the end of your post...I needed to hear that tonight. I feel so alone till I come here. My one safe place where I can trust everyone....people that truly understand. I am a very sensitive person I guess you could say. And those few kind words of yours brought tears to my eyes.

God Bless you...thank you so much for your help, support and just being there. All of you are such awesome women...I don't know what I would do without this board...and I am so serious.

Sorry again for the long post. I promised to quit doing it...and I did it again. Ugh.

I almost forgot...because I started venting. :( Orignally this was about my liver enymes being at 147 back in May. They took blood from me yesterday to see if it went DOWN...and my infusion nurse said it was better now. Its at 70. So it must not be permant like I was starting to think...its dropping so far...so that is good. But you all say thats normal...so I can SLEEP easier tonight. I will have another CBC Monday before my chemo (herceptin). I will make sure I get results of NOT just cbc...but all blood work from now on.

Chelee

---------------------------------------------------------------------------------
Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 5 out of 16 positive nodes, Richardson scale 9 of 9.

DX on Dec. 20th
Radical Mastectomy 1-3-06
Chemo started in Feb.

Herceptin, Taxotere, & Carbpotin

[Chelee]

I still wanted to reply to Alaska Angel, Barbara, Al, & Michelle, but I didn't dare do it on that one SAME post as it was far too long as it is. I keep promising people I WON'T write these long posts...then I do it again and again. :( Will i ever learn...

But I am SO TIRED right now...its 3:20 AM...I have to get to bed...I can't keep my eyes open any longer. But want to reply to the other women also. Thanks a million. You are all so awesome.

Warm healing thoughts to each and everyone of you..

Chelee

[Chelee]

Barbara, I never thought about the combination of the Neulasta I had along with the full cycle chemo I had that week. Maybe that IS what caused my liver to get that high? Who knows what Neulasta does to that liver...we know ALL these drugs can't be easy on it. I forgot I had the Neulasta shot.

Alaska Angel, I could NOT of said it better then you did in your post. I could NOT agree with you anymore if I wanted too. I don't care if the doctors want to see all the results first and go over them, but like you said...we should be able to have a copy of everything they get within a reasonable time frame. (Starting Monday...I have looked up the law on getting my medical records...and they HAVE to let me have them.) So from now on..I WILL be getting everything rather they like it or not. They make you feel like they are hiding things from you. I know there are lots of people that DON'T want to know all the details...but I am not one of them..I want to know everything..and she knew it from day one.

We all know knowledge IS power. Had I know what little I know now when I FIRST was DX...I can guarantee you I would of never landed in the hospital. I knew nothing about my counts or neulasta, etc. Its time they start telling us what we need to know. Personally...I will worry less if I know what MY norm is and can see they are giving me what I need to take care of these things.

Hi Al, I just might get a scan of my liver as you mentioned. Prior to hearing my liver enzymes were elevated..I HAD been telling my infusion nurse that it sure seems like its my liver that is hurting me. That's why I was mad when she KNEW my liver enzymes were high and didn't tell me. Maybe it is my liver. I get tired of going for tests....but I sure like the peace of mind.

All I know if it wasn't for this board and all of you I would know nothing!
Thanks again to all of you. You all have no idea how much help you have been to me. Since they tell me nothing....I count my blessing for each and everyone of you.

Warm healing thoughts to all of you.

Chelee