How are people with liver mets doing?
Comments
-
Lulubee,
Z did say she was just going to check in once a month or so now. So maybe she'll be popping back for a post soon-I think she has an October MRI that will shed light on how the liver treatments are going, so maybe she'll wait for those results. She is definitely missed.
0 -
Grannax so very glad you are feeling a bit better today.
0 -
Well, ladies, I'm writing this update from my hospital bed. I came to the ER this morning with very labored breathing and shortness of breath, along with a very high heart rate. That was about 11 hours ago.
The CT scan showed only minor increase in disease, but they did remove 1100mL of fluid off my right lung, which helped quite a lot. This is in addition to the 780mL they'd tapped from the left lung last week. Had that been the only issue, I'd be home right now. But they just HAD to do blood work, didn't they?
My liver is quickly going downhill. My bilirubins were elevated today, and my AST went from 480 last week to 756 today. So they're keeping me overnight to see if that comes down after the drain.
My MO came in to talk with us this afternoon, and we finally got the last piece of the cancer puzzle. I am officially triple negative. He's at a total loss as to what to do for me, because the AST is so ridiculously high. He referred to a "very narrow window of opportunity for treatment."
So... He comes in and tells me that I now have the last necessary ingredient for a perfect storm (widespread mets, malignant pleural effusions, ascites in the abdomen, triple negative cancer, and off-the-chart liver enzymes) and then, when I cried in despair, "Why bother?!?" told me to not give up hope. That I need to keep fighting. But how? With what? I've just been told there's likely nothing you'll be able to do for me, and then tell me to not give up hope?
So that's where this sister is. I hope everyone else is having a better week than I am!
PP
0 -
PP-I am so sorry you are going through all this! I hope they can find something to give you. Maybe get a second opinion from another oncologist? I know it's hard to find treatments when you are triple negative. I had a friend who was, and she ended up having a couple chemos, then it came back, and she had a stem cell (or a bone marrow, sorry this was at least 5 years ago) transplant (she had to stay in her home and only saw her sons, because she had no immune system before). She lived for at least 3 more years after that. She even got remarried, to the man that stood by her for all of it. There are new treatments coming out every day. Never give up hope. It's what keeps us all going! Big hugs!!!
Lynne
0 -
i have been dealing with bc for 20 years. it has now morphed into triple negative. i am on carbo/gemzar and my doc saiys it is working. my liver is softer and smaller
0 -
PP-Wow, what a lot to handle...thinking of you. Your MO will come up with a treatment after thinking for a bit and/or consulting a peer. so glad you are breathing easier. Best, MJH
0 -
lisajo. I'm so sad to hear your news. I have no words of wisdom, I pray that someone will.
I went to see the I R today, turns out the new met didn't even show up on the MRI. So, there's nothing for him to zap! Plan is to repeat scans in Three months. Meanwhile I have to see what MO wants to do about TX, AA or go back on I/F.
I feel very relieved. PTL
0 -
Grannax2! Yeah! Glad the liver MRI showed no lesion. What do you think it was? Inflammation? I forget, did it show up on CT scan? Please come back to Ibrance/letrozole. Looks like it was working afterall.
0 -
Grannax, that’s good news! So glad to hear
0 -
Oh my, Princess, my heart hurts with your news. I have no words except to breath and let this night pass. With a new day, there may be a new path to bring quality. Hugs and May peace fill you and give you rest tonight.
J0 -
That's great Grannax! What a relief! Something similar happened to me when a CT showed new bone mets which an MRI (may sleepless nights later) proved was not the case.
0 -
PP, sorry to hear about your day in the hospital. I am glad you gained some relief from the draining. How did your MO know you are triple negative now - recent biopsy? Most chemos given for breast cancer may be administered with liver enzymes as high as yours and chemos can reverse a bad situation quickly. High liver enzymes may disqualify you from doing Afinitor but if you are triple negative now, then Afinitor would not be an option anyway. Hoping things turn around for you soon.
LisaJo, great news to hear Carbo/Gemzar is working and you are feeling more like yourself with good improvement in your liver! Powerful combo.
Grannax, glad you received favorable news at your appointment. If the new lesion didn't show up on the MRI, does that mean you have not officially "progressed" after all? Where did it show up recently - was that on a PET scan? If so, MRIs are supposed to be much more sensitive than PET scans which means it is great news it is not showing up on the MRI! All in all, good news!
0 -
Grannax— I'm soooo happy to read about your latest findings. If I had a choice, having been on AA already and having noticed the tremendous SE and how frequently and quickly it fails, I would go back to your previous TX. Regardless, I wish you the best outcome!
Lisajo6, congratulations on the positive results, may you benefit for many years to come!
PP, so sorry to read about your recent setback. Be strong. I do hope your MO finds a proper TX for your condition. Maybe being off for a little while, will give your body a chance to repair the damages from the prior TXs. You are in my thoughts and prayers
0 -
PP - Peace, comfort, and easier breathing to you. I'm so sorry.
0 -
PP- Triple negative cancers are a different beast and are more responsive to immunotherapy, which can be given with chemotherapy or targeted drugs, there should be new combinations that may work wonders for you- good luck!!
0 -
PP-
Praying for you.
0 -
Grannax-Wonderful news!
0 -
I woke up thinking maybe I dreamed the negative MRI, nope it's real. Yippee I'm getting ready to call MO about Afinitor delivery. It's supposed to be delivered today, I think I'll pretend like I'm not home. I don't want to accept it if there's a chance she might put me back on I/F .
JFL. It showed up on, my PET. Increased uptake, 2 cm and 5.1 uptake. I think I R thinks it's inflammation or healing. I think my MO is still not sure. That's why I'm thinking she might still want to change TX. I'd much rather stay on Ibrance.
PP I'm so sad to hear about your situation. I'm praying that one of your docs will come up with something to give you hope.
0 -
PP, I am so sorry that you have had such bad news. You MO did tell you that there is a narrow window opportunity for treatment. If that is the case, and that window is open now, WHAT IS THE PLAN? Has he spoken to your 2nd opinion MO for advice? Does the third opinion MO whom you were planning to see have your records? If so, your MO could call and consult for another recommendation. Sarah (Scwilly) had recommended Cisplatin since she was able to take it with a very disease liver. Did you ask your MO about the possibility of using that? I am sorry for all these questions, but I know you are upset and devastated and might not think of these things yourself. I am lifting you up in prayer and hope things turn around for you.
Grannax, WOOHOO for your good news. Scans are not infallible. It's a bit alarming, isn't it? I hope you can stay on Ibrance. Enjoy your vacation.
Hugs and prayers from, Lynne
0 -
PP, So sorry to hear of your recent news. I agree with others have said, chemo could be very effective quickly and turn things around. There are many clinical trials available for triple negatives, my ca changed to TN and I had several to choose from. I'm glad they were able to help you breathe easier. You've been in my prayers.
Grannax, So glad to hear of your scan results!
MJH, The nephritis I wasn't aware of specifically....but was feeling just "lousy" for several days. I'm sure the lack of thyroid function and having very little energy wasn't helping. Now the neuropathy in my fingers and the high steroids, making me jittery, is making typing difficult. But I am feeling much better! We are watching the kidneys carefully and I have an apt with nephrologist tomorrow.
0 -
Thank you, ladies, for all your caring support, and all your encouraging words to not give up. My liver enzymes did come back a little higher today, so I'm not sure what to say about that. They did an abdominal MRI this morning to see if there may be some sort of blockage in the liver that may be eased with the insertion of a stent. We'll get those results later today.
The MO from whom we got the 2nd opinion did mention Gemzar, but he's aiming towards getting me into a clinical trial, which won't happen with my ASTs at 755. I think I'm going to start getting pushy and say, damn the trials, give me something that will HELP. I'm hoping to get a visit from my MO today while I'm stuck here in this hospital room. We're armed with questions and goals this time, and I refuse to be discouraged!!!
I've had the most amazing nursing staff. Even the gentleman who transported me to the MRI building was amazing. It sure does help to be surrounded by staff who are kind and caring. The overnight nurse, Beth, sat with me for about 45 minutes last night while I had a crisis moment. It turns out that we share the same faith, and we were able to pray together. It's incredible how that turned my mindset around.
Grannax, I'm so delighted for your good news. Keep up the good work, keep fighting the good fight!
Take care of yourselves, each and every one of you.
PP
0 -
PP, I've never been in your situation so can't give you any advice but will say this. I think you've got to get pushy with your doctor. You have to be your own best advocate! Will be praying for you to get into some type of treatment quickly.
0 -
PP, glad you found the nurse with the common religion. You need some support right now. Now, Pushy Princess Pincushion has a nice ring to it!
I am concerned about the time it takes to get into a trial, which can be 6-8 weeks in the best of scenarios. I am surprised the MO doesn't have you starting on chemo while in hospital, given the small window of opportunity. The “good" news is that mets that come on very quickly also tend to respond to treatment and die quickly. Continuing to pray for you and a good resolution to this crossroads.0 -
JFL- I was just put on Xeloda and Navelbine for my liver,lung and medestinum. I got worse after 2 rounds of EC. How many cycles of Xeloda did yu take before your liver started to respond? Also I am on 7 on / off cycles less side effects.
How long have you had the liver mets. I have chemo brain may have asked this before. I really need to be alive for 10 years.
Hugs,
Raven
0 -
PP: Last May, I had many spots in my liver (20+) and very high bilirubin levels. I also felt so ill. Cisplatin was fantastic for me and my levels reduced dramatically after the first dose. I also had a stent operation, as my liver was blocked, and although my MO didn't feel this worked immediately I have always felt that it would have been a bonus once my liver became lass clogged. I was told Cisplatin was the only drug I could take with my liver levels. Its hard on the kidneys, and so took 6 hours in total which included 2 * 2 hours of hydration to ensure my kidneys were kept ok. I am now on Carboplatin - I did 4 rounds of Cisplatin but its was hard on my hearing and I wanted to hold off in case I needed to go back on it. Although I understand Cis was a harsher drug than Carbo my white and red blood counts did much better than on Carbo. I had a Pet scan after 3 months and it showed real reduction in my tumor load. I'm going for another one tomorrow and hope to see its still good I certainly don't have the issues I had (lethargy, nausea, pale stools, dark urine) when I was really ill with my liver.
On this thread I've seem many do well on Gemzar. My MO was going to add this to Cisplatin or Carboplatin for me but in the end we decided to keep me on a single track.
I am sending you massive support and good wishes. Keep pushing for treatment for yourself. There is a long list of chemos that can be used.
Sarah
0 -
PP, I had diffuse liver mets from Triple Negative Breast Cancer and was diagnosed in July 2017. I have been on carbo and gemzar for a year now and I have very little cancer in my liver. It is amazing I am still on carbo/gemzar for a year. Hoping this combo works on me for a long time.
Maybe your oncologist can try this combination on you and you will have success as well. Praying for you daily.
Tricia
0 -
Great news Grannax!
0 -
PP, I think God had surrounded you with His angels😇.
0 -
Raven, I have had liver mets for nearly 4 years, since dx in Dec. 2014. Xeloda started working immediately. I took 3000mg / day for 14 days on/7 off. My liver was 70% mets when I started with nearly the entire left lobe consisting of mets and was NEAD (lesions were there, although shrunken, but no metabolic activity) at my 3-month PET scan. By 9-month mark, mets went from 70% of liver to 10% and the healthy liver tissue in my left lobe regenerated. I must warn you that my tumor markers, liver enzymes (AST and ALT) and alkaline phosphatase (ALK) elevated/jumped immediately upon starting Xeloda and remained high for the first 4 months. Many MOs move people off drugs that may be working phenominally based on bloodwork which may rise in the beginning as the body is breaking down the dying mets and lots of dead mets are circulating in one's bloodstream. Always good to scan before ditching a treatment. Xeloda and Navelbine sounds like a strong combo. I hope it whacks back all of your mets into submission!
0 -
Grannax-Wonderful news! Very happy for you!
0
