How are people with liver mets doing?
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Woody, Ronnie, Spring, Penny - yes! Thank you!! I've been so worn out emotionally from progression, pain, etc. I slept well last night! If nothing else, I'm less tense! Maybe that will help the back pain! Just haven't figured out how to get it under control, so debilitating. Have a good day!
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SyrMom, Yay!! You've made my day with your good news! May it continue for you
Rose.
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Happy Dance for Syrmom!
Leah
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brain mass was just scar tissue and radiation necrosis. Few! Oncologist has graduated me to every 6 month scans from every 3. Same meds. Nice to be getting to a stable space with less testing. I'll see her every 6 weeks instead of every 3. Nice to be moving on. Just waiting to get off the anti seizure meds so my head will clear.
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Holy Crap, Leftfoot!!!! That's my "I'm excited" comment!!!! This is such goodnews...and you know how we love good news!!! I bet those drs were just as happy :-)....and to move to 6 week appts & 6 mo scans...that's BIG! Happy dancing. You should take another island vacation with your sweet family to celebrate
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And a Happy Dance for Leftfootforward too!
Leah
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Leftfoot, wowwwwwww wonderful news , doing the happy dance for you . Yayyyy.
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Thanks, Leah!
Fantastic news, Leftfoot!! This was the good news week. Rec my good news on Fri. 13th! So take that BC!
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More good news! First SyrMom and now you,leftfootforward. What a relief!
I hope this is the start of a trend on this thread. Wouldn't that be nice?
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I agree, lets continue this trend. Congrats to those of you enjoying a reprieve and hopefully the rest of us can follow!
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I agree, Laura. Liver mets are real tough to deal with & treat & support is so critical. I've also been very surprised and hopeful when reading how some women's liver mets actually disappear & haven't returned in years!! Never thought that could even be possible. Now, I'm sure it's more the minority vs majority; however, why not!! Why can't it be a result for any of us! We just don't know unless we try. I'll admit, I get real discouraged, though, when progression keeps raising it's very ugly head! As we know, this is a roller coaster ride; never did like roller coasters.Last night started with the leg cramps in addition to all my other skeletal spasms (back being the major one), ugh! I will find a way to live with this if it means those liver mets are being kicked out - I'm real convinced it's a side effect of Halaven. But I have my appetite & that's major for me, to enjoy food!!
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Great attitude Syrmom i am glad yoy got your spunk back , because this part of kicking those mets right in the gut . Yrue progression sucks and I , like you hate rollercoasters. But if one treatment works well enough to retreive them than yayyyyy for you. Liver mets are the hardest but the can be handled and as you said why not us? Mine disapeared for now and i hope more of us will follow . I am sure the spasms are from the chemo hang in there a get a good med to relieve you and hopefully your next scan will bring more good news. Xoxoxox
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Thanks Woody, yes, have some spunk back. I was at the point I couldn't even post, between fatigue & depression, just was so apathetic! Cautiously optimistic now!
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I'm not sure if anyone give me any advice, but here goes. I was diagnosed stage IV with liver mets on Dec 2nd, 2014. The timing of my diagnosis was crazy because I was in the process of moving to Duluth, Ga from Fort Belvoir, Va. My doctors at Fort Belvoir, immediately sent me back here (I flew out on Friday) to Emory University's Cancer Center in Atlanta to start treatment that Monday. My whole world was literally turned upside down as most of you all must have also felt. Chemo knocked me on my butt, and I have been vomiting from the first day of chemo till today. I cannot hold any food down. The doctors have done all types of test and given me all types of nausea medications and nothing seems to work. I am getting desperate. I am so weak and fatigued. I can barely walk. I have chemo this tues and I am going to beg the doctor for nutrition through IV or whatever they can do. I get so frustrated because I feel like they are not listening to me and are just treating the cancer but not treating me. Help anyone, please!
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Dear sharonsp, welcome to BCO forum where you'll find many people with extensive practical and research knowledge, who may be able to help. Sorry you are having such a tough time and we hope it settles down or some treatment for nausea. Hope the nutrient situation can be sorted out too.
It must be so hard to be moving only to be sent to Atlanta for treatment.
All the best, The Mods
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I just got diagnosed with stage 4 breast cancer with Mets to my bones and liver, back in September 2014. Forgive my ignorance, but what is NED? Also, does stage 4 mean we are on chemo forever, do we ever get to have hair again? I'm not familiar with all this yet, as my onc moved and had to start over with a new one. So far, I've had 8 rounds of radiation and next week will be my 5th chemo of herceptin and Perjeta, along with taxol. I used to have liver pain and vomiting. Now the pain isn't as often and haven't had vomiting in while. Just had a PET that showed no progression, but still have to go over the results with my onc to ask more about the liver. Is it better to just have the tumor removed? Thanks for any info!
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Hi, sharronsp. So sorry to welcome you here and to know that you're having such a rough time, along with the stress that goes along with moving. It's important to get something in you that will stay down. Your body needs good nutrition to fight those liver mets. Have you tried ensure or something similar? How about yummy smoothies made with just fruit and crushed ice (the dairy from yogurt probably won't agree with you). At the very least, I'd try some gatorade to get some important electrolytes back into your system.
What kind of nausea meds have you tried? Sometimes I have to take both zofran and compazine at the same time to successfully fight off the nausea.
I pray the doctors give you better advice or at least set you up with a nutritionist. I know others will come along and give you some more advice here, also.
Do you have any help? You're exhausted and it would help if there were someone to make you some dry toast or heat up some broth for you. If anyone offers help, don't be afraid to take it and be specific about your needs. Trust me, we've all learned that the hard way.
Keep us posted on you.
- Penny
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Hi, Allyme. Sorry about your diagnosis. NED is the acronym for "No Evidence of Disease". As stage 4, it's assumed that there are always cancer cells floating around in your bloodstream somewhere, but if you're declared NED, it means that there is nothing large enough to be detected on scans. Some never get to NED. Some have it for weeks, months, or even years. As stage 4, you'll always be on some kind of treatment, whether it's just chemo, chemo with anti-hormonal meds, just meds, perjeta and/or herceptin, or whatever cocktail the oncologist and you decide is best for you. You'll even be on something if you reach NED status. Your hair will come and go, probably several times through the years, depending upon what treatment you're on.
You can ask to referred to an Interventional Radiologist (IR) to discuss targeted treatments on the liver, such as ablations, Sir-spheres, chemoembolization, Stereotactic Body Radiation Treatment (SBRT), or even surgery. Some patients have had better success with these treatments then with systemic (chemo, etc). Everyone is different, including your body's reaction to treatments.
I say thank The Lord for the great scan showing no progression. Since you have no pain and no vomiting, I'd ask the oncologist if the mets have shrunk.
Be your own advocate - learn your pathology (er/pr status, grade of cancer, etc). Learn about treatment options. Don't be afraid to get 2nd opinions. My first oncologist would not refer me to an IR. My current one has no problem working with one.
Keeping you in prayer. Keep us posted.
- Penny
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Sharonsp and Allyme, i am truly sorry you have this club but welcome . As you will see there are many of us here and we are all eager to help in any way we can. Of course we are in no way a replacement for doctors but we can share experiences and knowledge and give each other courage and hope.
I conquer with Penny you have to be your own advocate , and if there is something you are not pleased about , then you make sure you tell it to your onc and make sure he answers. Second opinion is another option . Sharon not all people are able to have a surgery on any other intervention with liver mets. Each body is different and each cancer is different you will habe to ask a specialist so he can tell you if you are candidate to any of the procedure Penny mentionned. At stage IV you are always on some kind of treatment. It is not a curable stage ( only 1% are cured) but it is a manageable stage now woth new medication coming up every few months and we are lucky there are so many options.
Allyme , i would ask my onc if there was any regression and how much taxol/herceptin/perjeta is a good combination and is giving good if not excellent results though the scan should be done between the third and fourth cycle of herceptin/perjeta and taxol and you have to leave at least one week between cycles to have the scan so you can get accurate results. After three months on this combo my liver and spinal mets disapeared there was no indication of any activity on the PET. now in april i wll have my second PET and see what is there. Then my onc will decide a course of action according to the results. I pray you have the same results soon God's willing.
Both Sharon and Ally tell your doctors of any discomfort you have and insist on a solution specially you Sharon he has to find you aneffective med for vomitting as you need a good nutrition. I , along with my onc i have a family doctor whom my onc reffers me too when it is something he cannot handle . Usually he goves all meds related to side effects but she helps me manage them.
To both of you i wish good results and it is a long way and hard at times but very doable have faith, patience and be sure you are physically and emotionally fit enough to endure it. My orayers are woth the both of you.
Keep us posted
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Lolllll Syrmom you are still my hero ! Plus it is normal to be apathic from time to time chemo does that to you. God bless you and keep this high spirit in you even cautiously . Hugs.
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Hello all -
I was just recently diagnosed Stage IV after a PET scan and biopsy that showed a single liver met (no lymph node involvement so it must have spread through the bloodstream). When my onc called he told me the median overall survival was 14-16 months. I am 35 and have very young children. The diagnosis was crushing at first but all of you are showing that there is certainly life much longer than 14-16 months after a diagnosis like this.
I was wondering if anyone had a similar diagnosis (stage IV from the beginning and not recurrent with liver met) and if your onc suggested anything other than just the chemo and targeted systemic therapy? Like radiation or surgery for the met spot or anything else? My onc is saying that he doesn't recommend it because it doesn't do anything to prolong my life. I was thinking of asking for a referral to see a radiologist anyway.
I just started chemo and herceptin and perjeta on March 12 and can no longer feel the lump that was distinguishable just a week ago. I'm hoping it has the same effect on my liver. I'm just at a point where I want to make sure I'm doing everything I can from the beginning to fight this cancer. I have tried calling for second opinion Dr. appointments this week but nobody will see me since I've already started treatment with another doctor. They said they would be able to talk to me after I finish the chemotherapy.
Any thoughts you may have would be extremely appreciated. Best wishes to you all.
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I have liver mets confirmed in 2013. The scans since show only one spot. For the last few days. I have been having slight dull pain on right side under ribs. Going tomorrow for all of my scans. Could this be progression?
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Josalive - I don't have the same experience but I would keep trying for a 2nd opinion. I find it odd that the excuse is that it's because you already started treatment. I thank The Lord the lump is smaller - I think it's a great sign of what treatment is doing in your liver. Someone else who's been diagnosed the same way will be along I'm sure. Sorry you're here, but you've come to the right place :-)
Roberta2 - I've had slight pain that had turned out to be regression, from scar tissue I guess. Keep us posted on your scans..
Prayers for all,
Penny
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Josalive, I was dx out of the gate in 2008 with Stage IV Triple Negative Breast Cancer with Mets to Lymph Nodes, Liver and Lungs. After my first round of Abraxne shrunk my tumor and it wiped out everything except a spot the size of a quarter on my liver. The doctors decided to try Red Devil first then schedule Cyber Knife Surgery to zap that one spot on my liver. I never did the cyber knife cause the Red Devil got me to NED (no evidence of disease). Following the chemo, I got a double mastectomy, followed by radiation and for the heck of it another round of Abraxane.
To this date I am still NED and have been on a extended chemo holiday since 2009, so anything is possible.
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Josalive,
I am really sorry you are here but as Penny said you have come to the right place. Having liver mets from the begining is sure not a nice diagnosis. But your onc had no right to tell you what is the median survival before at least the first therapy. While it is true in stage four surgery on the primary cancer is obsolete because it is already outside your breast it does not mean you are condamned. The therapy you are gettting now is the new first line therapy for her2 + cancers and people are getting excellent results on it. The results will show after your third cycle and will continue after that. Actually, there are some studies which show that people who are stage IV from the start do better than those with reoccurent disease. I also like Penny find it odd that no one will see you until you finish your treatment. Even though this treatment if it works for you will continue minus the chemo. There is a lady here who was diagnosed with liver mets from the begining 13 years ago and she is still alive and kicking. So 15 months is really too generalized it is median true but if this one is successful you will get 56.5 months and i do not advise to think ahead of this much as each cancer is different and respond differently . Who knows your may go into remission for a long time . There is no way of telling or knowing. Wait first to see how well you will do on this one and take it step by step. Already after few weeks you are not feeling the lump this isgood news right? So focus on that right now the rest will come later. Statistics are done as a guidlines not as a must do or must happen. People respond differently. Stay strong for your family and yourself and have faith. I know it is not easy but it is a start. God be woth you and please keep us posted.
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Ronerta2,
I have pain till now everytime i have my chemo session and it is not a progression , actually it was the opposite all my mets were wiped out. Chemo causes pain in different parts of the body unless the pain is unbearabl whoch in this case you should mention it to your onc , otherwise do not worry.
i hope your scans will validate regression.0 -
So many new names here!
sharron, Good luck with your chemo today. If you are still suffering from nausea and vomiting press your medical team to do something about it. There are many different meds out there for dealing with chemo induced nausea. Some people will respond better to one medication than another so it is worth pursuing this to find out what is right for you. Have they given you anything to take at home? I take odansetron. I am sorry that you are dealing with the stress of moving at this time, too. It can't help.
Allyme, Regarding NED status, I prefer to think of it as no evidence of active disease. There is always some evidence of the disease whether it be damage to bones or scar tissue after the mets have been treated. The important thing is that you do not see any progression and your disease is under control or even better, regressing. It is not always possible to remove the tumor depending on it's location. In some cases removing it can be more problematic than leaving it for the chemo, targeted or hormonal therapy to work. Having said that, it is well worth getting an appt. with a interventional radiologist (IR) to see if you are a candidate for one of the treatments mentioned above. I hope an IR is able to offer you something positive.
josalive, I would continue to try and get a second opinion. I am afraid I don't like the attitude of your oncologist. No one comes with an expiry date and there are many, many women here who have lived far beyond 14 to 16 mths with liver mets. A lot of research has gone into targeted therapies for HER2 positive cancers and they have been very successful in keeping this type of breast cancer under control.
Roberta. The location of the pain does sound as if it is coming from the liver but without the scan it is impossible to tell exactly what is going on. I have had pain from liver met progression and liver met shrinking. I hope your scan today comes back with a good report.
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My surgeon called yesterday to say he had another look at my MRI and found a sacral fracture. I have to see him again tomorrow to establish how much of the pain in my hip is related to the sacrum and how much is related to the faulty hip screw. He says he still wants to do the femoral nail exchange. Apart from the hip pain and fatigue from chemo I feel well. I have my MRI on Monday to see how well the chemo is working and I am hoping that at least is positive. I could do with catching a break. No pun intended.
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Springwatch, I do hope you catch a break, lol!
I am leaving for Pittsburgh soon, 2 hours from my home for a whole body scan due to the intensity of pain in my legs. I went to the ER and the CT scans showed nothing. I swear that Adriamycin is going to do me in with generalized pain. However, my TM's shot up to 160 and since mine are very precise it is time for a change anyway. Only 3 months on the Red Devil - I hate blowing through chemo's, as we all do.
I put my house on the market last week, my youngest graduates from high school in June (when I will move) and I'm moving to Pittsburgh to be closer to my doctors and to family. Wow, realtor just called and they are showing the house again in a 1/2 hour so I better stop typing and straighten up again...stress,stress,stress
Love you all and a warm welcome to our new members on this site!
Laura
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Spring,
I hope you really catch a break
) . But it is good that your doctor is being thourough before you surgery. I hope you MRI shows good results after the chemo . Hugs.0
