Question for liver metsters

[CoolBreeze]

Over the course of my cancer, which is only in my liver, I have had seven chemos (plus various other meds - herceptin, perjeta, zometa, etc). I have had maybe 40 scans (had a liver resection so they've looked closely at me). I am been okay with all of us, few side effects, managed chemo well, etc.

Gemzar was different. I was unable to manage it and had to give up. Nausea, vomiting, discomfort, unbearable fatigue. Now that I'm off Gemzar I'm back to "normal" which is sick - but up and about, not in bed. I can do minor things and ritalin keeps me awake and while i don't cook daily I do once or twice a week.

I had a CT scan with contrast on Friday and had to go to bed right after the scan. Felt sick, nauseated, tired, unable to be awake. I'm sure I'm in the upper 20s for CT with contrast at this point, so I was surprised as I've never had a problem with it and it's never done anything to me. (I was supposed to go to my son's school play and I could not, I could not stay awake.)

I'm wondering if perhaps my liver mets is making it harder for serious meds like chemo and contrast to process out of my system? i'm not having the issue with by mouth meds, like pain meds, although I do seem to need more than normal - but the pain has increased so that's to be expected. It's the IV meds that seem to be doing it. (But I had herceptin, zometa and perjeta Wednesday and was okay)

So, has anybody had this issue before? Is it the liver becoming weaker, or perhaps kidneys or something less effective? I guess I don't understand how the liver operates so don't know if this is part of the decline.

I am hoping to start TDM1 soon. The CT is to see what is going on and why I've had such a difficult time with Gemzar and to see where I stand pre-TDM1/Kadcyla. I know it won't be a good result as the pain in my liver is now up to the shoulder and getting worse. I'm also quite tired and am up to 3 ritalin a day to stay awake.

Just curious if I'm alone in this or if somebody else has had it? I fear that this means that my time is growing shorter but who knows? I am hoping TDM1 will change things around a bit so am not giving up but would like to know if this is common. *hugs*

[Redwolf8812]

Hmm. Maybe you're onto something. I recently started having bad reactions to several meds/treatments, including the iodine for the CT scans. My mets are in the liver.

[IrvineFriend]

Hi Ann,

I just read your blog and honored to know you and your experiences. Thank you for sharing your journey and I am praying for relief soon and a treatment that works until the final cure is found. I do believe in it.
-Julie

[Jackie07]

Noticed on StephN's posting that she'd had treated liver mets with Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!

Maybe that's something you can try while waiting for T-DM1 and/or other treatment.

Hang in there. We are all rooting for you!

[kk1]

Hi Ann;

I am also on the frequent scan program, the contrast also makes be feel like ##@Q$@ for a day or two after.

While you wait for TDM-1 maybe you should talk to your doctor about a Xeloda,Tykerb, Herceptin combo. I don't see Xeloda, which is converted to 5FU in the liver, or Tykerb in your profile.
Combo's withe Xeloda have repeatedly worked well for my liver mets anyway and it was not too hard of a combo.

[CoolBreeze]

I am back to "normal" - it only lasted a day.

No, I haven't had xeloda or tykerb. I think because I have colitis he tries to give me ones that are easier on the colon - I know tykerb can cause colon problems, don't know about xeloda. He said treating me requires a "delicate balance" because of this darn c.diff I got. It's a good suggestion though and I'll mention it. My doctor prefers xeloda for bone mets but that doesn't mean he doesn't prescribe it for other mets.

The gemzar was supposed to be the stopgap until TDM1 but I couldn't tolerate it.

Jackie, as you can see from my signature, I've already been on Taxol and Navelbine.

He has assured me there is more to do so I am not worried about that although I suspect my recent scan is going to be a poor one so we'll see. I am really hoping that TDM1 is the one that helps me and I hope I get on it soon. I'm not sure what's taking so long for their office to get it. But he has promised me he'll put me on it so hopefully, next time I see him he will have it ordered. I'm ready!

I am not an alternative medicine believer - I'm a very scientific gal and believe in research in labs to prove treatments. My youngest child wants to do a hard science and is going to do research in a lab this summer (he's a junior in HS) so you can see it's all in the family. He's been accepted to a very prestigious summer program and I'm super proud of him. It's across the country though and I have no idea how I'm supposed to get him there sick as I am. I hope by June something has me feeling better.

Karen, I have seen a liver specialist, Dr. Eric Nakakura. Google him, he's written lots of papers on mets to the liver and other GI cancers. He was the doctor who did my liver resection. People come from all over the US to see him.

I do appreciate the suggestions. I am not averse to trying acupuncture as maybe it would help with the pain. Seems to have been around for thousands of years so it must help people feel better.

I'm not sure what you mean by a "cheerful heart." If you meant me, I am not a negative person, and am in fact, pretty cheerful considering the hand I've been dealt. If you meant in general, I think we have to be very careful when we start to think that attitude can cure cancer. A positive attitude and cheerfulness can make life with cancer easier, for sure, but it can't stop those cells from dividing otherwise we'd all be healthy.

There are plenty of cheerful, hopeful, happy people who thought they would survive who are now in graves because the disease got to them. There are also mean, sour, nasty people who manage to live long lives. It's just one of those crazy things in a chaotic world that often makes no sense.

I'm very against blaming cancer patients for their own illness. I think we need to be very respectful of the way another person chooses to deal with a terminal illness. Not everybody can joke about it like I can and I would not expect them to. I think it's easier than crying all the time, but if somebody wanted to spend their time crying, I wouldn't tell them not to either.

Thank you ladies for your suggestions. I guess we'll wait and see what the doc says on April 3rd. That is 2 days before my 55th birthday! Although I suspect I won't be hearing good news, I still plan to celebrate my birthday. Somehow! I am not sure how since I can't do very much anymore, but I'll think of something.

[vballmom]

Ann, forgive me for asking a dumb and hopefully not insensitive question but exactly why is TDM1 taking so long to get to you? Is it a matter of insurance? Is it not available yet? Are you being a squeaky wheel? It seems cruel to delay.

I don't post much, but I check in with you every day and can't wait for this drug to be a success so I can see pictures of you at your son's COLLEGE graduation.

[kk1]

Ann,

First I just want to say you're AWESOME. We have never met, but I love the way you write with such compassion, thoughtfulness, and intelligence.

So one thing I notice in your profile is the ER+ issue. Are you on an AI? All the latest research shows that it is really important to block both pathways at the same time. Certainly was true in my case....every time estrogen began to rise the big C came out of hiding too. We tried different approaches over the years to block estrogen, but finally got rid of the internal parts and have been stable and NED since, of course also combined with an AI multiple HER2 blockade plus the zometa.

Like you I grew a bunch of scientists. I also never thought I would see either of them even graduate from grammar school. This year the first one graduated from University in December, and is admitted and heading to graduate school in the fall. I think I might even get to see the second graduate University in another 2 years. Keep the faith, it is possible.


k

[lkc Gumby]

Hi Ann,
Your post brought me back to when my Mom was dxed with mets to her liver. She had numerous lesions (too many to count) and the prognosis was quite poor.(she had many other health issues as well) .The Onc found a cocktail that worked and with a few adjustments she was able to live a full , and active life for many years. She passed away at Christmas at age 80.

I sincerely hope you are able to get TDM-1 as it's a much more gentle tx. and may allow you to start feeling stronger and also kick the crap out of this mets.

[KaiM]

Hi Ann, I love your blog and your no nonsense approach to this illness. I too have liver mets and colitis and have had good success with Tykerb. I have never dealt with c diff though so my colon may be in better shape. It seems to me that TDM1 should be available to you now, I hope u are being a squeaky wheel, And I hope that TDM1 is the drug that gives you the time and relief you so desperately need.

[SoCalGal]

I think we are tired because this freakin' surviving is exhausting! Glad today is a better day for you. I've been kicking and screaming for 17 years so not exactly on board with the whole good attitude thing. I mean, my attitude is up and down and sideways depending on the day and a million other factors. We all fight in our own way - I can read from your blog that you (as many of us) are a woman of grace. Tough times to not feel well and to need pills just to get up. I can not tolerate the contrast from CT anymore. Makes me vomit - my doc says I'm allergic and they've just stopped giving me contrast w/the CT.

I am going thru a neck nerve pain that has shut down my life over the last 5 days. Apparently it is a most inconvenient time of year to need a doc - easter/passover/spring break and they're all on vacay. Meanwhile, I am weaning off the prednisone that I finally tried in order to get some pain relief and will see some left over doc in the pain management center tomorrow - hope she doesn't kill me. Already had the mri yesterday and am pretty sure I need an epidural. Had one 4 years ago that lasted until now. I always feel that cancer is enough and it's not fair to have any other problems!!

Sorry to go on and on, just wanted to say, please hang in there - I'm on the same targeted combo as you and without liver mets I am just very exhausted most of the time! Constantly pushing thru/forward and ahead with whatever drip or drop of reserve that I can find.

I do a lot of work in the cancer community and always tell my classes that one cannot wish themselves well or ill. It simply doesn't work on wishes or we would all be well. Smile and the world smiles with you is true, but most of us cannot get there everyday.

Just get thru today, with me, hour by hour. This too shall pass. Soon you will be double nickles, like me and however you celebrate that birthday will be another win for you and the family! Day by day - that's all any of us have, right?

Okay, I'm rambling... Feel better, and remember my mantra, "I don't know how this is going to be okay, but it's going to be okay!"
Hugs and hope for some relief,
Flori

[CoolBreeze]

Thank you ladies, for your wonderful posts, and so full of hope! I confess, I've felt so poorly lately that I've been thinking life is going to be very short for me. But then I hear stories like you told and I remember, I might have time yet, maybe a lot more - nobody knows. This could be just a down time and something may work and who knows, maybe by summer I'll be feeling good and taking a trip to NYC to take my son to his summer program! I sure hope so! It's harder to remember that when you feel sick.

As for the TDM1, I'm plenty squeaky, don't worry.

My doctor has assured me that I would be put on TDM1 so I imagine it's just ordering, training nurses, paperwork, and paying for it. It's an expensive drug they have to buy, and I think it's fair to not nag yet. The drug has been out and shipping less than a month. I honestly don't know how a medical office works but it's a small clinic with five doctors, not a huge hospital-based one. At this point, I have only skipped one chemo so I am not far behind. But trust me, I won't go months and months without getting the drug and if he doesn't give me a start date when I see him next week, I'll start to push a bit.

I had my CT last week and will get the results next week (my choice to wait that long) and I expect I'll have more answers about when I'll start it next week.

I see the doctor April 3rd and my birthday is April 5th. I will tell him that all I want for my birthday is TDM1. LOL.

As for the AI issue - I failed on tamoxifen, progressed. And, I was still pre-menopausal so he didn't want to give me an AI. He said it could have the opposite reaction than we wanted and it could start my ovaries up again. I was only very weakly ER+ anyway. But I will ask him again, as I have aged since we have had that conversation. And, I would like the protection of tykerb for my brain if my colon can handle it. I'll ask him too.

Thank you all for reminding me that not everybody with liver mets kicks off within a couple years. Some of us hang out a few more years, and yes, I want to see my son get his degree from not only high school, but then college and then grad school. Knowing him, it'll be a PhD. He is very focused and has the ability to work towards something and get there, unlike his mother, who is very ADD and just.....

.....what was I rambling about?



*hugs* to all you

[Mtngrl]

Ann,

A friend with liver mets is doing very well on TDM-1. I hope you can get on that soon.

Your insight about the liver disease making reactions more difficult/extreme sounds to me like a good one.

Hang in there.

[Andrea Barnett Budin]

I was a liver metser. And a regular at the CT machine.

The bathroom drama was incredible following the drinking and injecting of contrast. I was doing that ev 2 mnths for at least a yr. Then graduated to ev 3 mnths. Finally I begged for ev 4 mnths. Ok, I was told, but you can't go any more than that.

Eventually, I got to ev 6 mnths! PARTY! And now -- I'm annual. Live in hope, my friends.

Re contrast -- confession. I cheated. They were giving me this amount then next time a different amount and no one seemed to have a handle on it. So, I cut off a little. And got a nice reading. Each time I went, I cut back more. And more. And more. At the center, given the drink (bringing my fav tea bottle w/me) I still drank less than they gave me. Went to the ladies room, and I poured most of it out. Still, got a good reading.

And, I didn't have to deal with just MAYBE IF I WAS LUCKY making it to the bathroom in time for the rest of the day and days after.

Then, I had itchy scratchy palms as I was leaving. I popped to Benedryl. In the car on the way home, my husband told me to take Benedryl. I explained I had. When. I told him, 15 min ago. He said, Take 2 more. And I did. So I slept. But the itching subsided.

Finally I took 2 Benedryl the night before and the morning of my CT.

And now, blessedly, my onc writes -- NO CONTRAST. Though I do still have to drink. But -- I never drink it all.

Sharing, cause my daring might just help another suffering soul. And that would make my day!!!

My total admiration to every one of you! Sheroes all!!

Love you all,

Andi

[Mtngrl]

When I was thinking about joining the study I'm on (early-stage use of Tykerb and Herceptin with no Xeloda) I whined about having to have CT scans instead of PETs because of the additional radiation and because of the nasty contrast drink. The doctor (a second-opinion oncologist) told me there's not a lot of evidence that extra radiation increases cancer risk in adults, and I don't have to have the contrast. I asked my oncologist, and she agreed. SO I DON'T DO THE CONTRAST.

It's "enteric contrast," meaning it makes it easier to see into your guts (as I understand it--feel free to correct me if I'm wrong). We don't care about my guts. We care about my liver, lungs, spine, and other non-gut innards.

Somehow, though, the CT people have never gotten the message. I get a CT scan every 8 weeks. Every time I check in, they come towards me with a little tray with that opaque white canister labeled "berry smoothie flavor" or some such completely fraudulent characterization and I say, "I don't do the contrast," and they want to talk about it. The last time, the guy said, "I'll just tell the radiologist you refused it." OK, buddy, whatever floats your boat, but get that nasty stuff away from me.

Ask your doctor. You may not need the contrast. I had liver mets. They get perfectly nice pictures of my now-healed liver without the contrast. See if you can do that too.

[Andrea Barnett Budin]

I can't drink the normal drink. I apparently get "bowel loops" and the radiologist can't read my scan. Then they make me drink more. and redo the scan. and the problem keeps reoccurring.

In NY they gave me ORAL HYPAQUE.

Though I no have an order for NO CONTRAST -- I have checked this w/the onc and w/the imaging center -- I still drink the drink which I only drink a small amnt of. At the center they give me the clear stuff to mix w/my tea. They say I have to drink it all. I say ok, go to the ladies room, and take only a few sips. OTHERWISE I LIVE ON THE TOILET FOR 3 DAYS.

I DO NOT GET THE CONTRAST INJECTION. And they get good pics every time.

That's my experience.

(Initially I had mets throughout my liver, too many to count. FYI.)

I get CHEST/ABDOMEN/PELVIS SCANS. Never had a PET. Most say they are awful. Long and you have to stay very still. My onc doesn't believe in them. Too many false positives.

For me CTs are easy breezy. Especially when I secretly diminish the huge amnt they consistently give me except when they give a laughable gynormous amnt. Sometimes I get a small bottle. Sometimes I get a huge bottle. I would never make it out of the bldg if I drank it all. I take about 2 tspns worth in a large tea bottle.

But I am interested in hearing what your experiences are. I am due in June for now annual -- with no contrast. I am told I must drink, but don't get the injection. Very confusing.

If you have abdomen, they say -- have to drink. but no injection.

BIG MYSTERY HERE... Now I'm even more confused. (Maybe it's the wine I'm drinking as I type...) )

Andi

[KsGal]

Im a liver mets girl, although right at this moment I don't have any and instead the stupid cancer has decided to attack my brain. If your liver isnt functioning as well as it should, it should show up on your lab work. I believe the liver function tests are on your lab sheets as AST/ALT, SGOT and SGPT. If you are like me, you are getting your labs drawn frequently. Ask your chemo nurse or onc nurse or whomever to go over them with you and see if they are elevated. Mine are quite elevated right now, and my oncologist didn't even catch it until I brought it up. Lots of prayers and positive energy to you.

[Andrea Barnett Budin]

Docs and nurses are really really ridiculously busy. No one worries about you more than you. I promise.

I collect every report every written about me. I keep them in a NO MORE CANCER file. I compare my #s w/ea new report to the last.

It shows you, or should show you, what the NORMAL RANGE IS. Beside your # for each function there is just a # -- or a # w/an H (meaning high) -- or a # w/an L (meaning low).

My BUN is typically high. They tell me to drink more water. (I drink 10 8-oz glasses of water a day, to keep hydrated, to swallow all my supplements, to keep all my organs happy.) So they don't know why but my BUN is high.

All my other #s are basically consistent. When I see an inconsistency, even a very, very slight elevation (as with my liver enzymes, just as KsGal says AST/ALT, SGOT and SGPT) I asked my doc what is that all about? I wouldn't worry about it. Ok. 3 mnths later -- same scenario. What could be causing that?? It could be anything -- your cholesterol meds. It's very very slightly elevated. Don't worry about it. 3 mnths later -- same, same.

I've posted somewhere or everywhere about this. Because it was at that moment that my Inner Voice made me say, I want an abdominal sonogram. Guess we could substantiate that (for insurance company purposes). Sono led to CT which led to liver biopsy which led to disbelief, panic over the multiple tumors found throughout my liver.

My tumor markers were still normal. One onc told me that for me, I can never rely on my TMs. Got it. So I peruse my lab work and every detail of every report for inconsistencies. Anything against MY norm.

Docs are fallible. Even if they are brilliant. They have a lot on their plate. We have to assist. Participate in our own wellness! Supervise. It's OUR lives we're talking about. Be proactive. Involved. They never say, You're being a bother. They say to me, You're smart. That's just what you have to do. Good for you.

So, my Sisters, please take charge. It's your duty.

Much love and positive energy,
ANDI

[ElaineM]

If T DM1 doesn't come along in a timely manner you might want to ask your doctor about tumor profiling.
They take actual pieces of the tumor they took out of you and match it with various kinds of medicine to see which medicines will work the best.
Caris Life Sciences and Precision Therapuetics are two labs that do that kind of work. Your doctor or you can do a search on the internet to get contact information for these labs.
All the best to you.

[Redwolf8812]

Ann - you went to the doctor yesterday, right? Hoping to see an update from you!

- Penny