How are people with liver mets doing?
Comments
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Sheila,
I am sorry you had such a bad luck woth oncs. Talking to you doctor will certainly help but you need to get yourself a good onc who can treat you right and listens to you. Other than that you can come here and vent anytime you like we are all ears and sometimes god advice.
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Torridon,
It is not necessarely progression if your liver enzyme went up, it could be some medication you are taking, some pain meds do that, statins and others. Are you taking any new medication?
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tryn2staycalm,
I am glad you are feeling better and seem to have passed the bump. Widhing always good health and good response
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Woodylb, our health system doesn't allow for us to pick and choose which Drs we would prefer unless we go private and being pensioners we can't afford to pay for all my treatments so we have to use the 'free' health system our government takes out of our taxes to provide.
Also, we live in a small town a long way from any major hospitals which do have a larger selection of cancer specialists. My stress levels would be out of this world if I had to travel with my DH driving for hours. He has issues with depression and the meds for it which have sent him a bit loopy and he totally ingores all the road rules, signs and lights, because he can't remember them or the way to go down the road. Believe me, I have been forced to become the world's best back seat driver for the last three years...I could back seat drive for Australia if necessary. I even use hand signals inside the car to tell him where to turn. Satnav Sally has got nothing on me.
Sheila.
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Sheila,
I am sorry i totally forgot about the health system in Australia
. Cancer treatments are very expensive everywhere and living in a small town away hours from a big city does not help either. Which leaves to do the best with what you got. Just be careful to be treated adequately so you won't suffer consequences of bad treatments. Your description of how your DH drives is both funny and scary lollll you are better off staying where you are. I hope talking to your generalist will help you and gives you satisfaction.Keep us informed and be well.
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Hi everyone, I have a question about liver pain. My mom, due to major progression, changed her chemo from taxol to Gemzar/Cisplatin. The plan is to do 3 cycles of 2 weeks on and one off of the combo. Her first cycle is over (so she's had 2 weekly chemos). First week she did not have any side affects but the liver enzymes (which exception of bilirubin) were extremely high and off the charts. But after the second week she started experiencing severe abdominal pain, particularly when she breathes. The onc saw her yesterday and felt that her liver is very enlarged and asked her to do semi-weekly ultrasounds (starting tomorrow) along with her weekly blood work. Depending on the results she will decided what to do about her chemo that is scheduled for next week. I am soooo worried because I've read that when you are at the point of having a lot of pain in your liver that it is not a good sign. Has anyone experienced similar pain that then stabilized? Thank you so much.
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fhaido....I'm sorry...both for what your mom's experiencing & my having no sound advice. Even when I had extensive mets & my onc could feel it enlarged, I didn't have pain. Maybe others will have advice, experience. I know when my enzymes were elevated, my onc said they probably messed up handling blood in the lab...That made me feel better for about 30 secs. Normal bilirubin is good. I read so often that pain can signify tumor death, and it will take a while for tumors to shrink, so I would think it not unusual for onc to still feel the liver enlarged. Ultrasounds will be a good, non-invasive way to see how treatment is going...and ask fog pain meds if needed. Prayers to you & Mom :-)
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Fhaido,
Hello again, i am sorry about the pain your mom is experiencing. However, I , like RonnieKay never experienced any pain except a little when i started my last combo and it was minimal and no change in Enzymes. I am sorry i cannot offer this much help here. If i remember correctly your mom had also have cirrhosis , i don't know if this could be the reason that the liver is enlarged with high enzymes. But the fact that her billirubin is not high is good, it means that the liver may be over worked but not damaged, at least this this what i know. An ultrasound is a good idea to see what is going on and how the treatment is going. I hope the pain is a signal that the treatment is working . Still inforn her onc for the pain , for some pain meds to make her feel better. Prayers for you and her and hope verything will be sorted out soon.
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hi Fhaido
I have just been diagnosed with liver Mets and it was the pain and swelling that took me to the doc in the first place. It hurt when I breathed, sneezed and I had referred pain in my right shoulder. The onc told me the liver can't actually feel pain it has no nerve receptors but what I was experiencing was irritation (bit of an understatement!) and a signal to my body that something was very wrong. Initially we tried anti-inflammatories which didn't touch it so on starting chemo I'm now taking a daily steroid tablet (dexmethadone) which has really reduced the swelling and pain is just the odd twinge. I do feel a whole lot better. I understand that you can also get a lot of fluid build up in the liver which would also cause a lot of discomfort. Sounds like your mum is getting closely monitored so hope they can resolve it soon0 -
Thank you so much Ronnie, Woody and Isy for your comments! I will keep you all posted - after her ultrasound and blood tests we will know more... Isy, it sounds like you and my mom have experienced similar pain. She is going to ask her onc for steroids if the pain doesn't get better. Thanks again, you are all in my prayers
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Just got back from having an echocardiogram, EKG and meeting with the cardiologist. He approved my oncologists decision to start me back on Herceptin. I will remain on the same two heart meds at teh same dose for now. My heart is basically back to normal. My only problem is that he really felt it was the Herceptin that caused my heart damage in the first place. So I am not feeling really optimistic right now. Actually, I am quite afraid. I am not on perjeta because it adds to the cardiotoxicity. So I am very fearful that my heart won't hold out and I will lose a whole bunch of options for future treatment. I know my fear will get better once I have had a litte more distance from this appointment and I start my Herceptin treatment again. I just wish that I could see the bright side of things. But because of all I have been through, I automatically think about the worst case scenerio. It just sucks. I am good at reframing things, but this just serves as a reminder of just how much damage this disease has done to m psyche. Againk I konw it will be better soon. I will be able to remember that he said my heart does bounce back (which means that I can take a vacation form the drug and go back to it again). and he thinks we can manage it if my hear function does drop again. he stated the obvious in that treating my cancer is highest priority. I agree. So overall good nes, just hard to stand up and say hooray. Monday I will get my first Herceptin treatment since March of 2012. May it wok its magic.
thanks all
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It sounds like you have a good, smart team, leftfootforward. I hope re-starting herceptin will go smoothly and that you can get some relaxing, fun time in and forget about your worries for a while.
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Leftfoot,
I am glad you are feeling better and that you are restarting herceptin, hoping it will keep your cancer at bay. Sometimes we have to choose which is the best of the worst. I know you are worried about your heart , but i hope the break you took made your heart well again so you can resume treatment. From what i understand , usually it is reversible , if it was caused by hercepetin . Last week when i did my echocardiogram , my ejection force showed a drop to 45 . My doc said the heart is good and responded well to stress , the vuvle is good and i have good reserve. But he prefers for me not to use my reserve. I have been on two keds for a month tritace 2.5 and concor teice daily. So we are stoping my next dose of HP till August , we repeat the test and if it is good , i am restarting HP.
Take a deep breath , have faithand hope all will go smoothly. Keep us posted. Prayers.
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Good luck leftfoot. I think being able to stop and restart the drug if any heart issues arise is very comforting. Of course, it isn't me going through it. I can send virtual hugs and prayers, though, and hope that brings you some ease.
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Ahhh Leftfoot...this disease definitely can test our bright side...I've found that so even in the best of times (using that term loosely). I'm remembering a few really tough things you've faced lately...and we've cheered good results. I'm hoping and praying that your heart will recognize herceptin & maybe have developed a way to resist it's damaging effect...kind of the vaccine effect! In any case...I applaud your doctors working together to find the best way to keep you strong & stable!!!!
Isy...welcome to our place of support & love.
Woody....Of course your heart is good!!! Glad they're keeping the reserves full :-)
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Leftfoot - You heart doc has your best interest in heart as I am sure your MO does. Let them do the worrying for a bit and try to have faith. We all know that at times that is hard but sometimes it does help us to relax and let the doctors do their job with your best interests in mind and staying positive is known to help. I know easy said but not easy done. However you have a wonderful bunch of ladies to support you. Me included I hope if I can. Best of luck to you.
Fhaido - Sorry about your mom but yes I have felt discomfort in my liver also and will find out soon if my Taxol chemos are working. Occasionally I still feel something but of a twinge but prior I couldn't seem to bend over for any period of time without terrible pain. Hope that gives you hope!
Cathy
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Leftfoot, it looks like you are in good hands. Hoping that your heart is strong again and will do well with the next round of treatment. Praying for you.
Cathy - thanks for giving me hope. The pain is a little better and we are hoping it only gets better with the new chemo. Lots of love to yo
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I have apparently failed Ibrance/Letrozole combo. My liver mets grew-doubled- in three months. Onc is starting me on Xeloda. Has anyone had any luck with this drug in beating back liver mets? My bone mets that are throughout my spine seem stable. Liver is not happy.
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As I try to read through this huge thread (skipping around a lot) I'm getting REALLY discouraged. I was stage IIIa, ER pos, Her 2 neg, Pr neg in 2002-2003. I did 4 rounds of A/C and 4 of Taxotere and 33 rads and was on Arimidex 5 years. "Cancer free" for YEARS. Then in June 2013 my cancer came back as stage IV in the bones only. Dr. put me back on Arimidex, worked for 10 months, took TM's from 898 to 200 range. Then on to Aromosin/Affinitor combo, worked for about 6 months, TM's went to 300 range. Then Faslodex this May, TM's in 400 range. Came back from vacation in mid July and had TM's done. 1142!!! So Dr. cancelled Faslodex, I had a medport put in yesterday. now chemo starts Monday. New Pet Scan this week showed 1 spot high on the dome of my liver lighting up, and multiple smaller spots not lighting up. Some bones lighting up again. He's going for Carboplatin/Abraxane, which no one here has had in that combo! 3 weeks on, 1 off, indefinitely. I asked about operating on my liver, he said it wouldn't work (I guess too many spots?). I haven't seen him since May, and won't until the end of August. Now I read here about liver biopsy, which he's never mentioned. About things "changing". What changes? From ER pos to something else? From Her 2 neg to positive? What are you guys talking about changing? And if he won't do a liver biopsy, what's next? he's been my trusted onc since 2002! What is liver ablation? I'm having zero luck finding anything out. I'm just getting ready for my chemo the day after tomorrow. And I just read to "insist" on a liver biopsy BEFORE chemo? That will take forever to schedule!!! And delaying chemo could kill me. I mean I was ONLY bone mets with TM's of 400 in May and then 2 months later I have liver mets and TM's of 1142? This is going FAST for me. I'm 56 and in decent health otherwise.
HELP. What can change? Do I HAVE to have a liver biopsy first??? I don't want to find another oncologist. Around here, there is ONE group in my city and ONE group in the next largest city and they are ALL under the same big group! ONE hospital swallowed up 2 other hospitals years ago and took over ALL the doctor offices! So going to another onc will solve nothing. They will not disagree with each other. I would have to drive 3 hours to find the nearest large hospital, which is Duke University. I'm in North Carolina near Charlotte now. A 3 hour drive every week is just not financially possible for me and my husband cannot take time off. I have NO ONE else to help me. I am currently on disability from work because of the terrible pain from the bone mets. I wear a Fentanyl patch of 25 mcg 24/70 -
Wandering...I'm wondering why, with having progression & moving to this combo, your onc hasn't seen you?? How/who relays this info to you? Yes, if you have liver involvement, you need it biopsied. Woody will give you info on this..she's shared with others. Her tumor makeup changed to hr2+, which added new tx options! Share the info you get here, it's totally relevant!! Yes, every body & cancer is different, but make your onc explain & justify everything & if you need to go to Duke for just a consult...you may need to. I'm sorry to sound bossy, but we all want, need, trust that we get the best tx possible. Hugs!
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Sandilee, I'm very sorry to hear that Ibrance + letrozole failed you, and I hope Xeloda does the trick. Were they able to biopsy the liver?
Sometimes a liver biopsy is too risky. (For what it's worth, my onc recommended against a liver biopsy because of my particular situation, and chemo did zap the breast tumor and the liver mets.) You need to get your questions answered, WanderingSpirit. I think a second opinion from Duke would be valuable. Does anyone out there have an idea of how to get an appointment fast? And doesn't the American Cancer Society have a program to provide transportation? This kind of thing is so hard to deal with, especially if you aren't feeling well.
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I'm new to liver mets so have little to add. My onc did not suggest a biopsy; she just got chemo started right away. Aftrr 2 cycles an mri showed it had spread to my liver so we got right on a different chemo, and it seems to be helping, based on my huge lymph nodes being practically flat. God willing, it is doing the same to my liver, lungs, and bones. My treatment is Gemzar and Carboplatin.
My onc sst me up for a 2nd opinion at johns hopkins. Hopkins called last week and I was out, so I will return the call Monday. I suggest doing it that way. It seems to be going fast. I'd have an appointment now if I hadn't stayed out with my friends so long.
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Wandering,
I am sorry for your progression , liver and bones are very much connected. If your bone mets were rightly controlled it would not have gotten to your liver. It is wrong to start you on a combo without biopsy to the liver. Because once you started the chemo , they will not be able to get good resutls or accurate ones. Cancer mutate yes, some don't but a lot do. If your cancer status have changed then you may need a different treatement.it may change from ER+ to minus the same for PR and HER 2 status also. I really think something is wrong when you are progressing so fast and you have notseen your onc since May. This is not good nor responsible from his side. Who is relating all these info to you? Not getting your chemo before biopsy is really bad. YOU MUST INSIST on one. It will not kill you to wait a little. Your onc should help with the appointment. Getting a second opinion is beneficial for you , because it may save your life. My cancer is ILC which is usually ER AND PR positive , the first thing my onc asked is for a biopsy.
Eventhough i had extensive mets in both lobes, we waited the results then started on a treatment. My her2 became equivoque, my ER WENT DOWN TO 60% my PR went to zero. So i took the specimen to another center and had sent abroad, while being treated (which was failing) after six months i got the results from abroad that my status on HER2 was deffinitly positive. I was running out of options and my tumors were barely controled , i had progression to my spine, hip, and some other areas. So i was started on her2 targeted therapies plus taxol. Since januray i have no evidence of disease anywhere in my body. I hope it continues now i am only on her2 meds plus nolvadex. My next PET is in august.
So as you can see biopsy is important , you may not get the results you want but i will surely give a map to your doctor on howto treat you. Ablationand all these procedures are not suitable for all metsters specially when the liver is envolved. Very few havesuccesful results on them. Some of these ladies here did it but after a while another mets popped out. If you are not cnadidate for it i advise to forget it.
I realise it is hard to do all this on your own with no one to help, but you have to do this for yourself. You have to be able and aware of all your options and everything should be explained to you. All the alternatives discussed. It is your right.
I wish you the best of luck and i hope you soon biopsy and get started on your treatment which i hope would be a successful one. Praying for you . Please keep us posted .
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Sandilee,
I am sorry for the failure of Ibrance and femara. However, xeloda is not a bad option. It has worked wonders for some and didn't work for others. Someladies here were on it for two years while others less. For me it gave me mixed response , some mets were stable on it while others progressed. Side effects wise, you have to watch for neuropathy and diahrrea . It caused me constipation lolll my onc said it is unusual. The effect is cumulative you on't feel much the first two weeks. It is woth a try , it isa good med and i hopeit works for you for a long time. Good luck.
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Sandilee I was on the drug trial (Canadian) for Ibrance/Letrozole and it also failed me yet it has done wonders for some. I had great hopes and was terribly disappointed when it spread to my liver then later bones which yes are very painful. I have no experience with Xeloda. Hoping it does wonders for you.
Wandering - I have same mets to lungs, liver, bones. I am now doing Taxol chemo and no I did not have a biopsy either. I seem to think some things are done different here in Canada or other countries than U.S. I do trust my MO and I know how caring he is. However reading what Woody has offered makes me wonder also. So far 7 weeks in and my lungs have shown improvement and now bone pain is lessening also. Taking both long action and short action hydromorph cotin. Praying for same to liver. Wishing you the best. I know how scary it all is.. hugs.
Cathy
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Hi ladies... Quick question... I have been on Ibrance+Femara+ once a month Zoladex shot since late June. Did pretty good first cycle with little to no SE's. Yesterday I noticed my hands looked jaundice and they are swollen. Having a little pain or twinges in the liver area... Should I be overly concerned??
Monika
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Monika, the little pain in the liver area is normal, it happens with treatments but the yellowish hands and swelling is not. Inform your doctor, he may require some blood tests. I hope all is well.
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Sandilee- I have been on Xeloda for almost 3 years and was no evidence of disease until recently. It has lots of various SE but all are managable for the most part. Check out the Xeloda website for more information or PM me and we can discuss it. I acutally have enjoyed me time on Xeloda and was glad when I was allowed to stay on it.
Wandering- I am sorry that you seem to not have all the information that would/could put you at ease. I think liver biopsies are good to determine if the type of BC you have is still the same. But, depending on where your lesions are located and how big they are, this might not be possible. If this is the case then delaying chemo any further would not be worth it. And I will say that the first time I had my liver biopsied, they did not get any diagnositc cells. I had to go back a week later for a second try. They were successful that time. so it is true that even if they biopsy it, they might not get the information they need. I would try to see your doc or talk with someone else as your new diagnosis is a big thing. And the first time I was diagnosed with liver mets, I had too many for the liver specialists to do anything about. disappointing. I had almost 3 years without any more liver mets before a solitary one just poped up. This time the liver specialists said they could help me. I was given the choice of ablation or surgerical resection. In ablation, they stick a needle( or a few) into the tumor and use microwaves/radiofrequencies to heat it up and blast it apart directly. Once is has been ablated there is nothing left to biopsy. They can try to do a biospy before hand but it is not guarenteed as they have to place the ablation needles first so might not be able to place a biopsy needle. And Like I said, once it has been ablated it is gone. So if you dont get a good sample, you are out of luck. Sometimes ablation is not recommended say for example the tumor is larger than 2-3 cm or is too close to blood vessels. Ablation is localized to the tumor itself so has its benefits such as recovery time and amount of tissue lost. Surgery has a longer recover and normally involves a hosptial stay. With ablations you can go home on teh same day sometimes. I went with surgerical resection to ensure I had a good biopsy. It was laproscopic so not a bad recovery ( two days in hospital, off pain meds withing 2 days, and on vacation with kiddos after 10 days). Everyone recovers differently so I might not be the norm.
anyway, I hope this helps answer some of your questions. I am sorry you are going through this. It is scary and you are right to ask the questions. We are here for you
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wandering--I can get you names and numbers at duke or unc. Pm me if you want.
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I'm new here and live in Chicago. Anyone from my area? I was recently DX'd end of May with numerous liver Mets and also in my bones. I went straight into chemo. My first MO had my on Taxol H & P. I changed MOs and my 2nd and all subsequent chemo is TCHP. So far I've completed three rounds total of chemo and had my first set of scans which showed significant decrease of liver mets and shrinkage. My enzymes are back in normal range too! My MO seems encouraged that treatment is working. Anyone else gone down this route? We are hoping for the best response possible. I suspect 6 rounds and don't want to do more, it's toug how
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