How are people with liver mets doing?
Comments
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Karen, Did you get your test results back? Hoping you get good news!
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Yes - I have the antigen. If all goes as planned, I may get the drugs this week.
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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.
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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
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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:)0 -
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!
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I'd love to hear how more of us liver metsters are doing, so bump
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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.
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Oooh new drug! Yay!
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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
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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.0 -
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
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Yes I have nausea occasionally.. hope that's normal
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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.
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Prayers that you aren't allergic, Hydeskate- how strange that an autoimmune disorder is keeping the cancer in line, but it makes sense.
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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.
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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?0 -
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.0 -
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.
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Karen,
Thinking of you, and wishing you well. We're here for you!
Sending love,
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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?0 -
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?
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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.
Linda0 -
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?0 -
Thank you Linda. I use to love Cream of Wheat as a child. I'll give it a go.
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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.0 -
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?0 -
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.
Moira0 -
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!
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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.
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