How are people with liver mets doing?
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JFL-Sending you the collective healing power of the universe. This disease just plain !@#%%s. You must be a little stunned. i know it will be hard for me when it's my turn.
Animalcrackers- I had a liver biopsy. It must have been percutaneous as it was "through the skin". It was a very easy procedure to go through. I had a "you just won't care pill". Felt just fine afterwards. Holding you in the light.
Love to all my MBC sisters, MJH
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JFL - That scan was a punch in the stomach. It may take a few days to get your fight back but it is unacceptable that you should die of this. PM me if you would like to brainstorm options. It gets a bit crazy once you move off Xeloda but the options increase daily. You sometimes have to inform yourself of your choices and push for the approaches that speak to, but I think you can fight through this and be around well past your 2 year olds graduation from college.
Cathy - Welcome. As you know I am very excited about your trial. The level of care you have access to makes me jealous but you are gracious with your time and sharing your experience. This will help many people on this forum.
I had a liver biopsy. I was sedated with something that made me zone out while still being present able to communicate and remember thep procedure. It was done with CT. There was no pain. My heart rate dropped to 40 beats per minute, probably due to my medical phobia making one last attempt to shut the whole situation down, but that was dealt with quickly and I was fine. In any case I am a total pansy when it comes to medical procedures and it wasn't much.
Everyone who progresses from bone mets to liver mets seems to arrive here bummed, but I started with liver mets and I expect to be around for a while. IMO, just a different set of hassles.
I agree with everyone who has a hard time remembering everyone's name and writing down what I feel when I read your post. My goal these days is to respond to one or two people and expect that others will cover the rest. But I am reading and I do get it and my main advice is to keep your head in the game through the ups and sometimes incredibly scary downs. The mental piece is hardest.
My spirits are finally lifting out of a week of depression after a good scan. One theory is that the good scan gave the space to grieve for some losses a bit. Many layers of grief, indeed.
>Z<
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JFL - That scan was a punch in the stomach. It may take a few days to get your fight back but it is unacceptable that you should die of this. PM me if you would like to brainstorm options. It gets a bit crazy once you move off Xeloda but the options increase daily. You sometimes have to inform yourself of your choices and push for the approaches that speak to you, but I think you can fight through this and be around well past your 2 year olds graduation from college.
Cathy - Welcome. As you know I am very excited about your trial. The level of care you have access to makes me jealous but you are gracious with your time and sharing your experience. This will help many people on this forum.
I had a liver biopsy. I was sedated with something that made me zone out while still being present able to communicate and remember thep procedure. It was done with CT. There was no pain. My heart rate dropped to 40 beats per minute, probably due to my medical phobia making one last attempt to shut the whole situation down, but that was dealt with quickly and I was fine. In any case I am a total pansy when it comes to medical procedures and it wasn't much.
Everyone who progresses from bone mets to liver mets seems to arrive here bummed, but I started with liver mets and I expect to be around for a while. IMO, just a different set of hassles.
I agree with everyone who has a hard time remembering everyone's name and writing down what I feel when I read your post. My goal these days is to respond to one or two people and expect that others will cover the rest. But I am reading and I do get it and my main advice is to keep your head in the game through the ups and sometimes incredibly scary downs. The mental piece is hardest.
My spirits are finally lifting out of a week of depression after a good scan. One theory is that the good scan gave the space to grieve for some losses a bit. Many layers of grief, indeed.
>Z<
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Cathy, I was going to ask from your last post if you were officially joining us but did not want to intrude. I'm sorry that is indeed the case but you will find a lot of help and support here. I had a biopsy as well "through the skin" and it was not bad at all. During the 15 minutes or so I was I there I only had a very brief moment of uncomfortableness. Then it was over. I felt pretty fine afterwards too, just slightly bruised in my ribcage area.
Glad you are feeling better Z. You are always such a wonderful support for us all, it's hard to hear you feeling down. Happy mid-week!
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Thanks Artist. Got a decent night sleep without cannabis, which may have been contributing to the mood swings. My complementary doc likes cannabis for sleep short term, but people don't seem to get enough REM sleep on the stuff. Still a bit shaky this morning but improving.
>Z<
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Yesterday I found out that Myra passed away this past August. I've been really upset and anxious since then. Sad for her, although I think I knew in my heart she was already gone. Now I'm feeling my own demise coming. Can't shake it. Couldn't even get through yoga today. And it's gloomy out. Doesn't help.
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Stefajoy - I have been thinking of Myra a lot since she stopped posting. I also knew in my heart that she was gone and it saddens me so. Thank you for letting us know of her passing. May she rest in peace.
Officially joining this thread as of today. Liver mets confirmed this morning on abdominal ultrasound by radiologist. Anxiously waiting to speak to MO for more details on number of lesions and location. Taxol is probably on the radar.
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Hello all!
Add me in. Today MO dumped all therapies and reserved my seat on the Taxotruck, my first friend at dx.. one huge liver met accompinied by it's satellite nodules not only caused considerable liver growth, but also great discomfort .. my long term pregnant belly now is revealed.
Hope my body shrink back to normal soon. No biopsy etc done, had Ultrasound & MRI along with detailed blood tests to confirm the situation.
Will be checking out this thread as much as I can.
Take care& hugs
Ebru
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Sorry Ebru and Linda, not a club you want to join but at least you are in good company I guess..I pray treatment goes well for you both and kicks those mets all to hell.
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Sorry Ebru and Linda, not a club you want to join but at least you are in good company.........I pray treatment goes well for you both and kicks those mets all to hell.
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Linda sorry you are here now, but as I mentioned in the bones thread, you will get a wealth of help and love here. I can't imagine the shock. Hope to hear the plan soon to make you feel better.
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Linda, please ask your doctor about Xeloda. I imagine the oral chemistry are more doable than the infusions. And I hear it can work very well on liver mets. I just started and rhatvsure is what I'm hoping for. Also, have you had a biopsy? There is a possibility the type has changed..since you have become hormone resistant (maybe your her- has changed to her+? That would open up a whole new gamut of available treatments. Take care.
Stefanie
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Thanks to everyone who shared their experiences with a liver biopsy. It put my mind at ease. I got confirmation that it will be percutaneous. I will be heading in to Mass General shortly. The biopsy is scheduled for 12:00pm but I have to be there an hour earlier. I'm happy to be getting it over with! After the biopsy I have to get more blood work because my last draw showed my neutrophils a bit low. Not surprising since I'm still in the wash-out period from Ibrance. They just want to check that they are rebounding. I'm supposed to start the new treatment for the trial on 5/18.
Thinking of you all.
Cathy
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Thank you so much girls. I have yet to speak to MO and am gathering questions. Your input is helping me with my list of questions so thank you!
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Stagefree I hadn't read any of your posts until today. I'm so sorry to hear about the liver mets. I have lung, chest and liver mets.
Does the swelling and discomfort mean you have ascites? I have some swelling, too. I've also recently had Y90 procedure. I'm hoping those yitrium spheres are just just busy fighting and winning against the tumors and that's causing the swelling. I have had the left lobe done and will do the right on May 24.
I have a 25 year history of B.C. and in 2000 MBC to C-3. After surgeries, I had Taxotere. It was not real easy for me but I made it through and the bone Mets never came back. I hope it will help shrink your liver mets and make the swelling go down. I'm on femara and I brance since January 5, after my next PET in June MO will let me know if I will need to change treatment or stay on F/I.
Wishing the best for you.
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Linda, I'd swear you're following me around. I lurk mostly.
Shout out to your too Ebru, waiting for the Russians to give us the cure.
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Hi to all those who have recently joined this thread and to all those who have recently progressed. I don't want to list everyone for fear that I will leave someone out!
Thank you for being supportive and informative to my recent post about progression and fears. After bouncing around every potential treatment option under the sun, I finally met with my MO today and settled on Afinitor and Aromasin. He recommended the combo (as did 3 or 4 other MOs he consulted with) but left it up to me whether I wanted to do a chemo first. I was heavily leaning toward chemo for the last week until he mentioned there is a window to take A/A - it is not a good idea to take it when one's liver enzymes are soaring. My enzymes are normal now so I figured I don't want to lose out on a treatment because I tried to postpone taking it. The other thing that comforted me is that my cancer center is participating in the trial with the new M-TOR inhibitor that is thought to be more effective than Afinitor. A requirement of the trial is to take and fail Afinitor first. My MO said I could join that trial when Afinitor stops working. I start Afinitor on Monday, before I depart to Europe. Hoping this drug lasts more than a few months. Based on my observations, it seems to work for many people but not for that long in most cases.
Wishing you all positive thoughts.
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I'm still a page behind reading and responding, but will post what I wrote so far because I have to go now.
JFL, I'm sorry to read of your progression. My mental experience has been similar to what you describe. When I first recurred and then had a complete metabolic response to my first treatment, I believed I could be one of the 4% for whom is would not come back. Then when progression was confirmed, I believed I could get two or more years out of every treatment and go on a good long time that way. Now with the possibility that the new treatment is not actually working, I feel like I may be doomed to be a sad story of only statistically median survival. Not an acceptable outcome for any of us. But a small hopeful note from my onc is that we really don't know the current median survival because the stats are from a time without all the current treatments.
Artist, the kind of denial you mentioned seems to be necessary for me to go on without being upset all the time. (It isn't the bad kind of denial, the kind that would keep us from seeing the doctor and getting treated.) As you say, 50s girl, progression forces us out of the helpful denial for a while.
JFL, Afinitor with letrozole was what came to my mind as a good treatment for you that is not chemo. (Can you elaborate on what you heard about it?) But like you I would be tempted to do some chemo first. Actually, I said I would do that last time, but decided Afinitor and faslodex were different enough from previous treatments that I should try them first. We will see what my next TMs say. But why taxotere when you have had it twice already? Because it worked well before? If a taxane is best, can you get Taxol, or better yet, Abraxane, for better side effect profile? And are you going to talk with an interventional radiologist who does liver radioembolization?
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I too had progression, I have one concerning met on my liver along with numerous bone mets. We are going to biopsy next week, and then start Doxil depending on the results of the biopsy. making sure it didn't change to HER2+
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Welcome everyone to this esteemed group. A lot of progression but also a lot of good strategies. Keep your head in the game, get the treatment started and get on with your lives.
Ibrance has my liver mets under control for now, but I am just getting started. Interested in how you all do.
>Z<
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Saw my MO this afternoon. Liver is full of mets, too many to count or outline. Onto to Taxol 3 weeks per month with one off week starting tomorrow or Monday.
Stef - MO doesn't want Xeloda just now, maybe in the future but she would want to have a special 5FU test of some kind done to see if I would respond to it. She feels the urgency to go with Taxol first.
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Shetland, the reason for Taxotere is because I am not resistant to it yet even though I have already taken it. For all practical purposes, I haven't really taken it for Stage 4 yet. (When I had it for Stage 4, it was just one single "bridge" dose (at a mild, weekly strength) that I took while pregnant because hormone therapy isn't safe while pregnant. Once the baby was delivered a week later, I was moved to hormone therapy.) Also, I think my MO suggests it simply because it is typically one of the first or second line chemos and is known to be one of the most effective for mets, with minimal side effects if administered weekly (at least in my experience). I am severely allergic to Taxol so that is out of the question - I tried it early stage and went into anaphylaxis in minutes. I don't mind taking Taxotere again - it may not "cure" me but if it gives me some time with progression-free survival, that is fine with me. I want to get as many yards out of each treatment as possible and avoid dismissing treatments that still might work. (In my head, I even plan to try Tamoxifen again at some point.) Like you mentioned, I thought my MO would put me on Afinitor and Femara. He mentioned that previously. However, I think he figures since Afinitor reverses or overcomes hormone therapy resistance, there wouldn't be an issue with me taking Aromasin again. Being that I blew through 2 hormone therapies in my first year (Aromasin and Falsodex), I don't mind being able to save Femara and Arimidex for later, possibly with other targeted therapy combos in the pipeline. At the end of the day, this is all a crap shoot and no one really knows what is the best course! I hate that aspect of it!!!
As for what I heard about Afinitor, I believe BestBird posted an article about this at least a year ago, maybe more. I never forgot after reading it. The crux of the article was that the mutations that the cancer makes to get around the M-TOR inhibitor supposedly results in a cancer with very aggressive characteristics. This was argued by the authors of the article for being the reason why Afinitor did extend progression-free survival but not overall survival. I don't know what to believe. I hope these authors are wrong!!!
Linda, sorry to hear about your liver. One thing about liver mets - they can grow quickly but they can also shrink quickly. I hope Taxol does that for you.
Keetmom, I am looking forward to hearing about your experience on Doxil. I heard that it is very effective but without the cardio toxicity and severe side effects of Adriamycin. I was browsing the Doxil thread and can't believe it is only administered once a month. It must really pack a punch on mets if it can be given that infrequently! It is definitely on my short list of future treatments.
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Hi Everyone, this is my first post here. My name is Maria, I was diagnosed with mets to the liver, bones and lungs in May 2015, 12 weeks after my beautiful baby boy was born. I was a few months short of being 10 years cancer free and me getting pregnant was a miracle in itself. It has taken me this long....2 years....to really reach out as it has been such an intense time.
I am very happy to say though, that after Taxol and Xeloda failed I pushed to get on a clinical trial for a Parp Inhibitor and have been stable and shrinking for 1 year...yahoo! I am living a pretty normal life, taking care of my now toddler (thank God each and every day that I'm with him), living in the moment, juicing daily, eating a very good diet, exercising and above all being grateful for this chance. I was a total disaster last year. Liver mets were out of control, had to have surgery on my back (which helped a lot), radiation to my hip and sternum and a bout of pneumonia in there. SO- I guess what I want to say is NEVER give up and challenge your oncologist to be sure you're comfortable with what they're giving you.
I Just found out last week there has been a 22.5% reduction since I started. As I'm on a clinical trial I'm watched very closely which I love but it does stir up a lot of fear every 3 weeks when I'm tested. Last week my live enzymes were totally out of whack but as I had a CT about 6 days before which showed shrinkage in liver my onc is fairly certain enzymes are from a bad cold virus I had....where i took way too mayn Tylenol and Advil. Anyway....just trying to focus on the postive news. But oh my goodness, only you strong women can understand this type of fear.
I would love to hear how you're all doing, of any interesting drugs being taken which is working for you, and just how you all manage.
Sending loads of hugs and positive energy to you all.
Maria
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JFL - Afinitor is not on my list because of that article ... more than one study has showed we don't see improvements in survival on Afinitor. I used to rant against the stuff, but I subsequently moderated my tone. I have watch one well informed and well counseled, smart lady after another take it and do well. Still won't be my choice. I truly believe that if you inform yourself and then follow the course that feels right, you are doing the right thing for yourself. In the end we are not statistics and although we may in some sense all have the same type of cancer, we are all different.
If you read that article and you feel concerned, I would absolutely not take the stuff. You have other options. If you are being counseled to take it and you it feels like the right thing to do ... do it. There is no question that it kills cancer.
>Z<
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I think we all benefit from having so many great people here on this thread. I can only hope, along with others, that nobody will feel neglected by me if I don't respond to every one every time.
Stefanie, I am sorry to hear the news of Myra's passing and send my condolences to you and Linda and the rest. I did not know her, but am still saddened. This news hit you at a time when you are trying to wrap your head around new mets to the liver and starting a chemo pill. You will catch your balance.
AnimalCrackers, I had not heard of that trial. Is the trial SERD given via injection like the SERD Faslodex is?
JFL, that is good that Taxotere is still a viable weapon in your arsenal. Thank you for explaining why you are going with Aromasin, and saving letrozole for later to possibly use with a new targeted therapy. That is exactly my thinking about saving Aromasin for myself, since I have now been on Tamoxifen, letrozole, and Faslodex.
Linda, for what it's worth, Taxol was my first treatment for liver mets, and I found it very doable and very effective. It worked fast.
Ben's Mama, thank you for telling some of your story, and for the good advice. Welcome to the thread.
My goodness, it seems like there are so many new liver metsters and others with progression right now.
Z and JFL, is this the article, linked below? Is this the relevant part? "The authors explain that the lack of a statistically significant survival benefit may be due to one or more factors: (1) the sample size being too small; (2) an imbalance in post-study salvage chemotherapy; or (3) the effect of EVE on cell-signaling mechanisms that could theoretically limit the usefulness of post-study chemotherapy." Does that last sentence refer to mutations making the cancer chemo-resistant? My onc told me up front that there was not longer OS shown with Afinitor, but we agreed that gaining more time free of cancer symptoms was a real benefit. One reason I wanted an mTOR inhibitor is that my F1 report showed a variant of unknown significance related to that pathway. But I had not heard of this aggressiveness theory. I will be asking.
http://www.medscape.com/viewarticle/834844
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Welcome Maria! I just became a member of the liver mets club a month ago. Had only bone mets and after 9 months it exploded to my liver. My Dana Farber MO put me on Xoleda so I just finished two weeks of it. You will find so much help on this site. It has become my hope and life line.
I don't always remember everyone by name but you are all in my prayers and positive thoughts.
Animal crackers keep us posted on your trial and Shetland Pony I am the same way read the threads and hate to leave anyone out. It just seems so strange that a handful of us just joined the liver mets club.
It's only from this positive bunch of ladies and men that I feel good and at peace with myself. Thank you all for your info especially "Z" and Babs and the countless others.
I never had my own children but I love baby animals so I take lots of adventures looking for youngsters to photograph. HAPPY MOTHER'S DAY weekend and this one is special for me, it's my 55 birthday which makes my mother so happy! "BIG HUGS TO ALL OF YOU" Anita
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Welcome to this thread, Maria! It sounds like all is going well, despite a tough first few years. Great to hear! We have a lot in common with the pregancy mets, having a miracle baby after early stage dx and a long time period between early stage and mets dx!
Shetland, I am trying to locate the Afinitor article. It went into a lot more detail on the issue. Will post a link if I can find it. Maybe Z knows where it is offhand?
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Bens_mama, can I ask what parp inhibitor you are on? Also are you BRCA positive? I am looking at a trial with a parp.
Thanks,
Robin
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JFL - These days I am lucky if I remember my name, off-hand. Thank god for Google.
Shetland, I could not follow your link because I have no medscape account and I did read but cannot find the article that postulated that Afinitor increases the aggressiveness of the cancer. However, it was Bolero 2 that found no increase in overall survival from Affinitor. This is an interesting mediation on how hard it is to interpret the results of Bolero 2. Bolero was a very large trial but ended up underpowered when it came to evaluating OS because they expected OS to follow PFS. Instead many of the people on the trial died ...
Every time I dig into the actual trials that inform our MO's recommendations, I realize that they are working with very weak leads...
>Z<
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Can someone point me in the direction of the Afinitor article about the cancer becoming more aggressive after treatment with Afinitor. I am currently on this drug and really want to read this article.
I had my blood drawn on Tuesday on day 7 of Afinitor and my tumor markers were already down 9 points. Although that is a small victory, I will take it since I have not had a drop in TM's for a year. I was refusing this drug for a long time but I was failing treatments one by one. So I decided to go ahead and give it a try. I still have fear of developing a lung infection, but right now with my liver progressing, I thought I should take the risk. My MO has a couple of patients who have been on this for 5 years. I hope to be as lucky!
Robin
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