How are people with liver mets doing?

blondie1

I continue to be very scared once I found my liver mets progressed after having to go off doxil. I am hoping to find some support in alleviating my deep seated fears by hearing other stories of people living and dealing with liver mets. My onc says I have such a petite frame (105) that an enlarged liver will definitely cause me some pain until chemo takes care of it.



How are others doing and getting through this with a positive attitude?

lilsiskathy

I'm new to this site, but I was on zeloda.  I couldn't take the side effects.  I got really sick and could hardly walk, and it didn't shrink my tumors.  However I know everyone is different, I have read a lot of post here, and other sites, where it worked wonders.  I have had liver pain from the beginning.  I've had bc with liver mets for almost 5 yrs and have not been in remmission yet.  I am currently on afinitor.  I'm just getting tired of nothing working for me.  That doesn't mean it won't for you, even the side effects are different for everyone.  Damn cancer!  Got to hand it to it, it is smart.  Well good luck to you.

brandall

I was diagnosed as stage IV with liver mets pretty much out of the gate last July.  They resolved with chemo, which was 8 weeks dose dense ACT (the T being Taxol).  I was scanned after the AC cycles and the mets had shrunk a little, but not a lot.  After the Taxol they weren't there anymore, that was in December.  I've been NED since then, but just in the past few weeks I've had a lot of hip pain, so my PET was moved from September to next week.  My liver mets never hurt at all.  I've got my fingers crossed that NED didn't leave me

brandall

Oh and lilsiskathy - 5 years with liver mets gives me hope!  Thanks for posting

blondie1

Thanks for the additional posts.  I keep searching for good news hoping it is out there for me.  My onc is looking for a chemo that will get me stable quickly and then going back to something that can be easily maintained.  There always seems to be a bump in the road over the last 2 years.  I wind up having to do radiation for a bone met causing me severe pain and then by the time I am done with the radiation the cancer starts progressing in other parts of my body.  It really sucks to feel I can't get it under control now after having it under control for so many years.  Prayers to all of you fighting this battle.

MamaPeg2

GREAT NEWS! I had my 1st CT scan today after 3 rounds of Xeloda.

1 small lesion stable

1 small one GONE

the larger one - shrank over 50%

I was shocked! All the side effects were worth it! So far anyway!

Anko66

I was diagnosed with two small liver mets in Dec 2011, stage IV from the start.  Did about 20 weeks of Taxol and Herceptin which got me to NED (or so we thought).  Switched to Tamox and Herceptin but by Dec 2012, scans showed 5 mets in my liver. I was re-biopsed and the cancer had flipped to triple negative. I have now been on Taxol since January this year and I am stable - liver mets down to about three although not necessarily shrinkage in some.  I also started Avastin in June so I'm hoping for good news in my next scans in September.

As for liver pain, I have occasionally felt pain after chemo - again I took this as a sign it was working.  The pain was specific to the biopsy site.

gonegirl

Mamapeg. That is wonderful

OBXK

MamaPeg - wonderful news!

Trish03

Wow! It's wonderful hearing from so many ladies who have survived 4-5 years with liver mets. That's really encouraging for someone new to this journey. And 4 ladies who have survived 10 years is amazing! It's also great to hear of so many different treatments that have postive results. So far, my treatment is working, but I'm happy to know that if it stops, there are many more options.

I had my first scans earlier this week, and after 3 cycles of Perjeta/Herceptin/Taxotere, my tumors have shrunk 30-40%. I was thrilled to learn that it's working!

All the best to everyone, Trish

OBXK

Scans tomorrow Sure hope I don't poop my pants!

gonegirl

Karen. Prayers coming your way

chanah

OBXK, I hope your tets went smoothly today.  My thoughts are with you during the wait.

OBXK

Thanks!

MamaPeg2

Karen, Did you get your test results back? Hoping you get good news!

OBXK

Yes - I have the antigen. If all goes as planned, I may get the drugs this week.

SyrMom

In one week's time, 2 weeks off treatment as Xeloda failed, my liver enzymes are abnormal.  First time, I'm freaking out.  Suppose to start taxol Monday, but hesitant due to side effects. 

Fluffernutter

Since my dx in 2012 I have had liver and bone mets both.  Multiple pet and ct scans show the old and new spots on my liver.  So far I have had more problems with the bone mets causing pain.  My liver functions have been normal despite the spots there.  Different chemos have given shrinkage and control for a limited time, but when they are no longer effective we move onto the next one.  For me, Xeloda didn't do a thing.  No se but no help either.  For me what has helped the most was Adriamycin but we are all different.  Now the Adriamycin isn't working so it's CMF.  Hopefully we will all find the right meds and control this beast.  

Blessings and Prayers

SPAMgirl

I actually discovered my liver mets because I had excruating pain right below my rib cage. It became worse as the day went on. I thought it was a pulmonary embolism, but the CT showed a lot of little tumors. It hurt so much I couldn't cry. With the liver pain and bone mets pain, I ended up with an internal pain pump.



Halavan was the only chemo that has worked for me. I had horrible SE from Xeloda and extreme progression. I'm crossing my fingers that my liver pain now is because the Carbo is working:)

debsing

I was diagnosed almost a year ago exactly. I went to the hospital with swelling of my abdomen( aka:ascites), vomiting and terrible heartburn.. I was in BAD shape. I found out my "stage 3" had now gone to my liver, omentum, and bones. I had multiple spots to my liver and the biopsy showed triple +. I was immediately started on herceptin, perjeta and taxotere. I did six cycles then they took me off the taxotere and I stayed on the herceptin and perjeta together. Unfortunately, about two months later I developed skin mets so we assumed the herceptin/perjeta combo wasn't working. The skin mets also turned out to be triple +. Very weird. They then added navelbine to the herceptin and perjeta and I had some areas resolve and others progress... VERY MADDENING, NOT TOO MENTION FRIGHTENING.. I hate starting a new treatment because I feel like I'm using up another option and I'm getting closer to running out. I'm now on kadcyla and have reasons to believe it's working.. one reason is because my skin mets have completely disappeared..PLEASE LET KADCYLA DO THE DAMN TRICK FOR A LONG TIME!

debsing

I'd love to hear how more of us liver metsters are doing, so bump

OBXK

I am in a drug trial (Xtandi). Too soon to know how it is doing. MRI last week showed lesions from T3 - T12 and an area on my pelvis.

debsing

Oooh new drug! Yay!

Trish03

Debsing, my stage 3 also progressed to my liver. It's great to hear that your skin mets have disappeared on Kadcyla! That's wonderful news! When will you have scans to check you liver's response? 

Except for the big D, I'm doing well. I have fatigue, and food tastes terrible for several days, but if that's the worst of it, I can't complain. Last week I had my 5th treatment of P/H/T. My onc has said that after 6 he may take me off the Taxotere. Although I really want to be off that drug, I'm also nervous about it. It seems as though so many people had progression when only on P/H. I wonder if anyone has done well for very long on just the two drugs.

My onc has also mentioned Kadcyla for future use if needed. How do the side effects compare to those with P/H/T? It's good to have contact with someone else with liver mets.

Hugs, Trish

debsing

I know sometimes I feel like liver mets is another group in itself .. the side effects so far have been minimal compared to p/h/t. The best is having my hair back and no more diarrhea. I feel better knowing I'm not one of the only ones that progressed on h/p, but I was very disappointed because I had such high hopes for the perjeta since a big deal was made of it.

Trish03

I also discovered my mets because I had pain. I went to the ER because I thought I was having a gallbladder attact. Turns out it was liver mets. The pain went away entirely after just a few days on chemo and hasn't come back.

Debsing, no more diarrhea and your hair grew, too! That sounds heavenly! I really hope that you get good results from Kadcyla. Lots of luck to you!

Trish

debsing

Yes I have nausea occasionally.. hope that's normal

hydeskate

I was dx out of the gate with liver mets in 2008, somehow Abraxane and AC red devil where able to zap the dozen spots that showed up on the CT scan when I was dx.  After 16 months of chemo I was granted a chemo holiday after having 3 consecutive NED scans (I was scanned every 3 months) in Oct 2009.  I was told it would be short, yeah almost 4 years later NED and no chemo.   Next scan will be this November.

My Cancer may be  under-control  but my Immune System is a different story....it on the fritz, haywire, deadly computer virus...basically way out of control.  Shortly after getting off Chemo,  I got dx with an autoimmune disorder Sjogren's, which is attacking healthy cells and doctors believe somehow it is keeping the cancer in line.  Apparently the cancer was the easy problem to solve the immune system entirely different ball of wax, this is my last option to get the inflammation and pain under-control and its not looking good. 

The drug is great (Methroxate) it has gotten the majority of my problems under-control, the problem is it appears I may be allergic.  I stooped taking it after a rash appeared, it has slowly cleared up, so we are going to restart and see what happens.  If the rash reappears then we will have conformation that I am allergic, which in turn means I am screwed, not a good sign when your ONC states "We will be in trouble if you are allergic"...ugh

Praying everyone else will have success on their treatments and hopefully you will get to hangout with Stable or NED for an extened stay.

debsing

Prayers that you aren't allergic, Hydeskate- how strange that an autoimmune disorder is keeping the cancer in line, but it makes sense.

OBXK

Hello ladies, I was wondering if anyone had been prescribed lidocaine patches? I read that you have to be careful if you have liver disease and are on them. Looking for a less sedative remedy for my back pain.

RangerMom

I didn't know where to go to ask my question so I apologize if I've picked the wrong place, please forgive my ignorance. However, try as I might, I can't let go of my crazy thoughts scrambled in my head about my recent MRI. I had a CT scan of the abdomen that suggested mets in my liver via enhanced perhiperhal uptake of lesions. the MRI today said this:

A lobular focus is noted anteriorly in the right lobe with some thin internal septation or may correspond to two adjacent cysts or this focus measures up to 2.5 cm. I know it doesn't read right but this is what it said. In the impression it said that the multiple cystic foci were more likely benign because it didn't show any perhiperhal enhancement. So basically, the MRI canceled out what the CT scan said. But....I have horrible right rib pain, front and back ribs and its been on going for 6 months now. Nothing shows in the bones there. What would you do with 2 scans, one saying possible mets and the other not when there is still severe pain? Thanks for your input and thoughts?

Denny123

I had extensive liver mets in 2004, but Gemzar with Herceptin put me into remission in 9 months.

The mets have not returned and I have continued on with Herception.

4 months ago, I went back on Gemzar for a recurrence in the lymph nodes behind my sternum and it is once again working very well.

OBXK

Feeling a little nervous. Had a CT on Friday, I have fluid in my abdomen for the first time. Had over 20% progression in liver mets. I have been in a trial for Xtandi - I am triple negative. I see the research team tomorrow. I am done with chemo. 

steelrose

Karen,

Thinking of you, and wishing you well. We're here for you!

Sending love,

Rose.

RangerMom

OBXK - You've had a really though weekend to get through. Its horrible getting news like this of progression and fluid. having a team has got to be some reassurance that they are doing everything possible to give you the most effective treatment there is. I hope tomorrow you will have some news that gives you encouragement. Do you have someone going with you?

OBXK

Thanks for the support friends. Now that my spleen and liver are enlarged, eating is difficult. If I drink an entire Ensure at one time, I throw it up. Anyone have any tips?

RangerMom

OBXK

I remember lemon/lime Gatorade with crushed ice in the blender was good for me. Its so trial and error. Cream of wheat was good for me too. What about grits? ice cream? Another thing that is soothing for me is a thin slice of fresh ginger brewing with my tea bag. If I think of anything else, I'll email. I am holding you in my prayers tonight for healing and comfort.

Linda

KarenMc

I was dx stage 4 mets to liver and lungs in January 2013 when my lungs collapsed. I am having radioembolization on November 5th I had the mapping done October 8th. Does anyone have any experience with radioembolization?

OBXK

Thank you Linda. I use to love Cream of Wheat as a child. I'll give it a go.

RangerMom

Welcome OBXK. I've been adding you to my daily prayers in the morning when I meditate. Please, please get better soon. I know I used to love the lumps in my cream of wheat! Still do, love it with some brown sugar and butter.

DancingVeggie

Anyone with liver mets feel like they can't sleep on their right side or back anymore? I have that feeling I got when I was pregnant and always had to sleep on my left side. I wake up feeling like I'm not getting enough oxygen. Anyone experiencing their vena cava being compressed?

Moiralf

Hi DV,

I can't lie on my stomach but I'm not sure if it's the liver doing it. It is on the right side up maybe a bit higher up. I usually sleep on my stomach so now I can lie on either side but not my stomach. Just plain weird how this thing affects us.

You would have to think that it is most likely from the liver wouldn't you but who really knows? Even though mine doesn't really feel like the liver pressing down it started about then so I'm going with the thought it is. Could be a rib for me too as I have mets throughout my ribs Just another thing to work around. I can sleep on my sides so I just roll over and try not to think about it too much.

Moira

SyrMom

Checking in with the liver mets group for the New Year.  How are we all doing?  I'd love to hear both positive and whatever we struggle with.  I'm up for another scan end of Feb., first scan did show a positive response to weekly taxol (my first IV chemo).  I get some discomfort in the liver area, randomly.  Sometimes goes away fast, other times lingers for days.  Never quite sure whether to be concerned as I was having pain when I had the "improved scan."  I was expecting the worse.  I also have extensive bone mets, the worse being in the T10, which freaks me out.  Worried it could fx at any time.  A fall would defin. do it.

MO's are often are doom and gloom once in the liver.  Mine say little, only commented when I was thinking of quitting tx when Xeloda failed me and I had 18 months of progression. However, I've read where pts have done well for years and some chemo actually makes the liver mets disappear ... would love to hear from those ladies as well. 

Let's do better updating one another, for better or worse! 

april485

SyrMom, although I am not stage IV, I am not sure if you know that Karen (OBXK) passed away recently (12/29) and Spamgirl passed as well. Sorry to be the bearer of bad news, but I just read it on the angels thread and thought you might like to know.

My prayers are with you all. I just lost my MIL to stage IV colon cancer which had spread to her peritoneum. I hate this f%$#ing disease. Hugs to all.

chele

Originally I had mets to bones only, but last month that all changed with mets to my liver now also.  We tried to do a biopsy on the liver.  I think I surprised the radiologist by being able to point to the lesion we were going to biopsy!  It's not a bad pain, but I know it's there.  The CT shows a lot of spots throughout both lobes.  I have a desk job so I have to keep reminding myself (or the pain reminds me) not to lean against my desk - it hits right on the painful spot on my liver.  I too have to eat small meals or I get very uncomfortable, and sitting in my recliner only makes it worse, putting my body in a *C* just puts too much pressure on my innards. 

Moderators

(((((HUGS)))))) to you All!

Trish03

After 3 cycles off Taxotere, scans showed my tumors are stable. I enjoyed the significant reduction I got with each scan while on Taxotere, but I don't miss the se's. I hope I can stay on just the PH for a long time. In all, my tumors, which started out about 20 cm, have reduced around 80%, and I no longer have any pain. We're going to scan after 2 cycles this time instead of 3 to make sure tumors are still stable. If the PH fails, my onc has said that my next drug will be Kadcyla (Tdm1). I'm not eager to cross this current treatment off the list.

All the best to everyone. Hugs, Trish

Cafelovr

I'm sorry to hear about Spamgirl and OBXK. Phew. It just breaks my heart to lose another sister. May they rest in peace, free from the pain!

I was dx Stage IV in October 2009. I have been NED since May 2010. I took A/C and Taxol/Herp. I couldn't finish the Taxol because of neuropathy (which I still have), but this month, I am starting my 4th year of Herceptin. I have an awesome cardiologist, oncologist, dermatologist, neurologist, and every other ologist you can think of!

I wonder how long someone can stay on Herceptin?

Lauriesh

I have had liver mets since July, 2010.  I have been Ned since feb, 2011, after doing taxotere and herceptin.  I am now on Hercptin and perjeta .

Cafelovr, I have seen some women who have been on it for over 10 years.  

Unfortunately, I am starting to get more side effects from the herceptin, so I only get 9-10 doses a year. I am afraid that I will have to reduce the number of doses even more if the se keep increasing.

SyrMom

April ... thanks for the update.  I knew about spamgirl, but not OBXX - I'm with you, I hate this disease. 

SyrMom

Lauriesh ... wow, NED from liver mets, amazing!!!!  Were you on dose dense taxotere or weekly?  How many tx did you have?  This gives me hope, for sure; keep on plugging.  Is the perjeta for only HER+ pt?  How do you tolerate that?  Any lingering s/e from the taxotere?  I have some neuropathy from taxol, weekly, but the L-Glutamine I just started to take seems to be working and reducing it quickly.  I'm very encouraged.