How are people with liver mets doing?
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A close family friend died on Saturday. She is the one who had ocular melanoma. Very rare, very aggressive. Her mets went to liver, they did every type of local treatment, eventually it all failed. She was only 55. I just feel sad for her family. Her mother is my age, her aunt is my BFF. But, I have to remember that with her cell type there has been no systemic treatment that has worked. We have a lot of treatments to try and more being studied because we're a much bigger group.
The other day i was shocked to hear one of my good friends, who is in the medical field, say that there's no pain with liver mets. I had been telling how much pain my friend had been in during the last month.. I said oh yes there is!!!! You better go read the liver mets thread. I know theres not as much as you would expect but most of you are having pain, correct?
I sure am glad we have each other, we're the only ones who really know what its like.💞
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Kaayborg, You are in my thoughts today as you undergo WBR. I hope you rebound quickly.
Wendy, I am sorry to hear about your progression. Eight and a half liters sounds like an enormous amount of fluid to drain off. No wonder you were in so much pain. How long have you been on Ibrance and Exemestane? How are the SE's? I hope they are tolerable and that they don't down those mets quickly.
Grannax, I am sorry for the loss of your friend. We tend to concentrate on the treatments available for MBC, and they certainly are not enough, but it is clear that we have many more options than people with other types of cancers have.
Z, it sounds like you are coping as well as you can with chemo. I fear that I would never do well with fasting. First of all, I am a stress eater. Second, if I know I can't have something, I immediately want it. Tell me I can't have foid, and I will knock you down to reach the refrigerator. I hope you see excellent results from Abraxane.
Kaylynn, I am sorry to hear of your progression. It sounds like a good time for the trial. I hope it is just what you need to see improvement quickly.
I know you all feel the same way, but I have to say once again....I hate cancer
Hugs and prayers to everyone from, Lynne
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Kaayborg. Kaylynne, and Wendy - so sorry to hear about your progression. Keep us posted on your trials...that will be the next step for me, after I try Opdivo/Y90.
I've been hounding my MO's office for an update daily on approval for Opdivo. Yesterday, at 5:30pm the nurse called and said they don't have an answer yet. I hung up the phone, and brought the mail in. I opened a letter from Bristol-Meyer Squibb saying I'm approved, and the letter states my doctors office has been notified. I'm getting more and more dismayed with this practice. 2nd opinion appt on 4/24...I may change.
Still waiting on Y90 approval. My company is now involved, but their HR is inept. I may have to bring this up the ladder to the CEO, President, and Chief HR officer. Fingers crossed that we're getting close.
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I still have not heard about my cat scan from Friday. My doctor does not see patients on Wednesday. I called his nurse about an hour ago-no return call. This must be one bad scan. I am currently on abraxane. It must not be working. I see him tomorrow and am afraid I am going to get the "talk." I can't figure out what else it could be. I cannot keep it together.....
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Lisjo, Our minds always go to that worst possible scenario, but it often is unwarranted. My experience has been that my MO calls quickly with bad news so actions can be taken and not as quickly with good news. There are several possible reasons why you have not heard back from the nurse.
1. Many times it takes up to 24 hours for the staff to respond to non-emergency phone calls. Even if the results are good, they may not realize how urgent it is that you hear them. Apparently the don't realize that waiting sucks and makes us imagine the worst
2. Some doctors just don't like nurses to deliver scan results, good or bad. I don't know if it is a control thing or if the doctors want to be there to answer any and all questions that you have.
3. The nurse hasn't had time to review the results or the doctor needs to review them first before the nurse can discuss them.
Can you contact the radiology department to get a copy of the results? Most places have them available to patients within 24 to 48 hours after the scans are complete. You probably will have to go there in person if you want them quickly.
I hope the results are good, Lisjo.
Hugs and prayers from, Lynne
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I've been following this thread and several others, mainly lurking, but am always so impressed with you-all. Your strong spirits, the determination, the knowledge, the caring and encouragement is uplifting. I'm saddened and mad when cancer progresses, but hopeful that there is something out there that will work for each of us.
Concerning liver mets causing pain....when I was first diagnosed with liver mets and had been started on Abraxane, I was having pain/pressure on my right side under my lower rib cage, where my liver is, I was very concerned about the chemo not working (my tumor lab #'s have always been normal and was waiting for scans) I asked a friend who is a GI-heptalogist (liver specialist and sees people with primary liver cancer-cancer that started in the liver) who answered me:
"Pain in the liver seems to be very unpredictable and usually doesn't seem to be a helpful indicator of what's actually going on. People with massive tumors being treated often have no pain and sometimes people with small lesions can have pain. Most of the time mass lesions in the liver cause no pain"
When I asked this, my reocurrance in my breast had been EXPLODING prior to starting Abraxane, and after I started the Abraxane I could feel the tumor 'melting' away in my breast. So, in my case, I think my pain in the liver was the tumor becoming necrotic and irritating the live tissues on the edge of my liver.
I don't know if this will help....but thought I'd share.
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Thank you for the responses. I finally got my scan results:
1.My liver mets have grown on abraxane.
2. Bone mets are stable
3. Lymph nodes have shrunk.
I mentioned to my oncologist that I wanted a liver biopsy. He is willing to talk about it. I don't believe my liver is Her2+. Herceptin and perjeta did not work. I don't know what to think.
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Lisajo, I am sorry that your liver mets have grown. A liver biopsy seems like a good idea if you haven't had one recently. It should help guide your MO to appropriate treatments. Have you had Foundation One testing? Some here have found it beneficial. I hope you meet with your MO soon to discuss options and a new plan. Please keep us updated. In the meantime, I am not surprised that you don't know what to think. It is always a shock to get news that liver mets have grown. It is not up to you to determine the next course by yourself. All you can do is arm yourself with knowledge, prepare questions for your MO, and have a fruitful discussion during your next appointment.
Hugs and prayers from, Lynne
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Thanks Lynne,
So do you know if liver mets can be controlled with the right chemo? I have never had a liver biopsy since I was diagnosed last June. I want to live longer than a few months. I thought abraxane was really good for liver mets-but apparently not for me. Like for all of us, it is a constant worry and battle.
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Lisajo, I cannot speak from my own experience, but I am sure others here will jump in soon to report their experiences. I have read posts from many people on these threads who have experienced control and even improvement of liver mets with chemo. One of the problems is that what works for one person doesn't always work for another. Different people see response from different chemos and treatments. I have seen many people here who have success with one chemo even after another chemo has failed. Our tumors sometimes seem as unique as we are. While unique is probably not totally accurate, there certainly are differences that are not always well understood. Just because Abraxane failed you, it doesn't mean that you won't see good results with your next line of treatment.
Hugs and prayers from, Lynne
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Most definitely some women with liver mets have found a chemo that controls their mets. My wife did, xeloda, and she eventually switched over to ibrance plus letrozole after it was under control.
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Thanks for the heads up, 50sgirl. I'll never tell you not to have food while standing between you and the refrigerator. The truth is that they have had very successful small trials of fasting and chemo, but they could never fill a real trial due to lack of compliance.And in the small 10-12 person trials that did complete they can tell from the blood work that some people were not actually in compliance. That damn glucose result never lies.The papers are funny to read.
They've developed a fasting mimicking diet that easier to handle has almost the same effects.It's in large scale Phase III trials across the country with chemo patients now.The protocol is available and I could follow it, but with the fasting mimicking diet, you have to be on it for 5 days. When chemo is 7 days apart, that leaves barely enough time for a decent snack between pseudo-fasts.Fasting for now.
KC - Way to advocate, you rock.Where do we find the strength for this is what I want to know?I just moved out of a practice with broken systems to a practice with competent systems.And if that wasn't enough, the doctor is solid, so far. Met him for third time today.
The problem is you don't know if you are changing into something better or worse and it such a HUGE effort to change.I found my new onc by asking a doctor who has a partner with breast cancer who she sees and so far so good. Asking a medical professional dealing with cancer personally for an oncologist recommendation may be an effective strategy. They know how things are supposed to work and where to find it.
Lisajo - I am trying to interpret your treatment history. Have you been on three different taxanes? Have any other chemos been offered? You certainly have a lot of good options with chemo as well as other classes of therapy, but it is a complicated space. Trials are an important option for you. I don't know your treatment situation but this will get over the head of a local clinician very quickly. You are not out of good options but you are approach the end of the standard playbook. I would start lining up a second opinion at an NCI designated center ASAP. Keep us posted.
I don't know how much those mets grew, but its not a terrible scan. You are in a good position to respond to another treatment.
KPW3 - thanks for posting. I just started Abraxane with significant liver pain. It's not getting worse, but I a little disconcerted that it is not getting better faster. Your post helps a lot. I understood that liver doesn't communicate its state well, but your personal experience made the fact a little more concrete. Helps me keep things in perspective. That is the challenge for all of us.
>Z<
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As I browse this thread I am just so upset that so many of my bc sisters are dealing with progression, tough SEs etc This disease really does suck! We’re always on a roller coaster ride that does become tiring and frustrating!
I wish that you all find the right treatment and soon!
Sending hugs to all
Babd
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I met with my MO today, and we had a good conversation. I start Opdivo tomorrow, as long as blood results are good. Also, if you recall, I stayed on one more cycle of Xeloda while I’m waiting for insurance approvals. If by some small miracle my TM’s dropped significantly with this cycle, we may choose to do another cycle and then scan. If TM’s are up...on to Opdivo I go—one infusion every 4 weeks. Still waiting on approval for Y90, but hopefully I will be able to do both simultaneously. I should have some news on that front by the end of the week. My MO is also ordering a liver biopsy, which makes me happy.
I’m still going for the 2nd opinion, but feel I won’t be able to leave my current MO while on Opdivo. They are the ones pulling all of the strings for Bristol-Myer Squib to cover all costs. It’s a pretty big deal, and don’t think it would transfer to another office very easily. This new MO I’m seeing is said to be the best at Northwestern, and they are an NCI designated center. At the very least, I’ll be set up with them if/when Opdivo fails.
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Z-
I have now been on all three taxanes. Taxol kept it out of my liver. When I went on Herceptin only it went to my liver. Taxatore shrunk the tumors in my liver. Then when I went on perjeta and herceptin I had growth. Started abraxane and it is not working for me.I have requested a liver biopsy and I am going to get a second opinion Tuesday at the Stephanie Speilman Breast Center in Columbus, Ohio. I find it hard to understand why my liver mets grew but everything else shrunk or is stable. I need to find the right combination of drugs. I am also setting up an appointment with my Radiologist about Y90.
Lisa
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Lisa, sorry to hear about your progression. The liver mets are tricky buggers. The liver provides such a rich microenvironment, with instant access to fructose, access to glucose stored in the liver and the ability to syphon off oxygen and nutrients pumping through the organ intended for healthy tissue, liver mets seem to be able to find work arounds to treatments easier than other areas, at least in some of us. You could have great luck with another class of chemo beyond the taxanes - Xeloda, Doxil, Halaven or others. Each has a different mechanism of action and target the cancer from different angles.
KC, awesome news regarding Opdivo! Opdivo combined with Y90 could create quite an immune response. Keeping fingers crossed you will be cleared for Y90 with insurance. Hoping the self-insured plan comes through for you!
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KC -
Moving oncs is very tricky.One cannot leave out of frustration, one must be thoughtful and strategic as you are doing.Very impressive.
I am THRILLED to hear that Xeloda has driven down the TMs.I may be confused.There are so many challenging treatment trajectory going on at once on this thread and I am in the middle of my own. However, I believe it seemed to me you were abandoning Xeloda too quickly.Flares are a thing. Rising TM's usually mean progression, but it is not uncommon for the TMs to fail to track the tumor regression correctly.I see you getting through this with a long successful run on Xeloda and a great next step (Opdivo) in your pocket.
I feel that one of the major problems in managing Stage IV BC is the weakness of our diagnostic tools.
You are doing just an amazing job managing your care in a situation that is both insane and typical.I hope when this is over and you are doing well you will look back and see what you did, as I do, and applaud yourself.Keep going KC…. with your determination and intelligence you will get this.
Could not be happier or more impressed. So nice to read your post this morning.
Lisa - You have more than one flavor of MBC. You need a kick ass onc. Nice work setting up a second opinion. Bring a brief written summary of your history. You made a great start in your post. That was well done. Onc have surprisingly little time to grasp the story. They might be the best onc in the world but the time they have is very limited. Possibly as little as 11 minutes per one of our members!!?!?!!. From your post I can see that you are up to the task of writing a clear succinct summary for the onc.
>Z<
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I am now off the A-train. Starting doxil next week. My onc and I both agree we are not convinced I am Her2 positive. So we will be doing a biopsy. I was concerned when I read my cat scan and saw there are 2 nodules in my lungs. He did not tell me, so I called and talked to the nurse. She said it was extremely small and not to worry. Anxious for my second opinion. Any one take doxil
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Lisajo, I mostly read this thread but don't post. I want to let you know that when my liver mets were first discovered my onc started me on a low dose of doxil and cytoxan and it knocked the liver mets out. Complete response. It was my first chemo.Wishing you all the best.
Lisa
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Thank you!
What kind of side effects did you have from doxi
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Z - I was HOPING o come in today, and find that X has driven my tumor markers down. No such luck...they have climbed from 981 to 1491 in less than 3 weeks. I'm getting my first Opdivo infusion as we speak - 480 mg, 30 minute drip, once every 4 weeks. Still waiting to hear about Y90, but will have a liver biopsy soon, regardless. I'm praying this works for me...not one treatment has worked since diagnosed on Jan'17.
I'm due for a break. 0 -
Anyone here have info on ascites, just found out that’s the problem with the swelling. I shouldn’t read stuff at med md but there it says I will need a liver transplant or I will die..
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Wendy, You are right about one thing, you should NOT read stuff on WebMD. There are many people on these threads who have or have had ascites. They did not need transplants. Ascites can respond to treatment. Some people need to have the ascites drained to make them more comfortable. Some people see ascites resolve in response to treatment. I am sure some people who have experience with ascites will post here soon. I just wanted to relieve your worry as much as I could while you are waiting.
Hugs and prayers from, Lynne
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Lynne ❤️❤️❤️❤️❤️
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Just got the news that Y90 is approved!!! Happy Dance, happy tears!!
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KC1010 - I’m so happy for you!! I hope you get the best results from Y90.
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thanks, Kaylynne! Pretty pathetic that we do a happy dance over a treatment like this. But that’s how we MBC patients roll.
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KC, congrats your Y90 is approved! Yay!
Lisa, I am on Doxil. I switched from Abraxane to Doxil 4 weeks ago and have my second treatment tomorrow. The side effects are minimal and I feel like a fog has been lifted since I went off Abraxane. I feel more like a human being again. Abraxane was doing a number on me at the end.
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lisajo6-I am currently on doxilrubicon. I am towards the end of my third month. I get monthly iv. I have lost some of my hair, not all and it is a very gradual loss I figured a small price to pay for living. I started immediately putting cream on my hands and feet twice daily to combat the hand foot syndrome. I started with "hand sh*t", then moved to aquafor, which is working better. I am just now getting some peeling skin on my feet. I don't go barefoot anywhere and all my shoes have some sort of padding. I haven't had problems with any GI issues.
I drink lots of water. My goal is to drink half my body weight in fluid oz. a day. Flushes out the toxins. So far, this has been an ok treatment. I hope this treatment is good for you.
Therese
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Thank you doxil ladies!
And yahoo for getting y90 approval!!!
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