How are people with liver mets doing?
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I am so sorry you are going through this. I have been thinking about your situation and reflecting on what has given me home in the past couple months after I've received the news that I have mets on my liver. I went through similar emotions as you. I still have times when I am a little sad.
But, what really inspired me was when I went to a breast cancer symposium last month. At the symposium I met other Stage IV survivors who have been battling for years. They seemed to not be bothered with their diagnosis because the medicines they were taking were helping their bodies fight! I also met a survivor who had Stage IV pancreatic cancer. She's been battling for 12 years! I've since friended her on social media, and I found another Stage IV pancreatic cancer survivor who is still battling after 16 years! All of this to say that the medications they have nowadays seem to be working wonders. Also, connecting with others one on one can really help. I have found a local organization called Bosom Buddies and they connected me with a Stage IV breast cancer survivor who was diagnosed 6 years ago. I've been able to call her and chat about any concerns or frustrations I am feeling. She was also able to guide me to a great oncologist for a second opinion on my treatment plan.
My thought is this: I am going to keep doing what the doctors tell me to and not worry until it is time to worry. I am not currently in any pain and I live my life as normal between doctor appointments. Most say that they don't even realize I have Stage IV because I look so good (which is very flattering and encouraging!).
I will share with you something I implemented early in my journey. My friend was the one who learned of it and shared it with me. There are some studies that have found that different types of mushrooms can help individuals with cancer. Just do a web search and you will find a lot of info.
In July of last year they found 2 small lesions on my liver after a PET scan and an abdominal MRI. The lesions were too small to biopsy, and no one knew for sure if the lesions were mets from my breast cancer or just some normal scaring. Doctors suggested I do an aggressive approach and suggested chemo, a lumpectomy, then radiation. I took Turkey Tail and Cordyceps capsules during chemo (1g of each everyday). Who knows if they helped (or not) but I seemed to have less side effects from my chemo than others who had the same chemo medications.
After my chemo, in December, they did an MRI and found no mets on my liver. I stopped taking the capsules after chemo to prepare for the surgery (they said to not take any supplements prior to surgery). And after surgery I just kind of forgot about taking them. In April a follow up MRI found 4 new lesions on my liver. A biopsy confirmed that they are tumors with the same type of cancer as found in my breast. Doctors prescribed Kisquali (600mg) and Letrozole (200mg). With their permission, I started taking mushroom capsules again; as of now, I take 2 grams of Turkey Tail, 1g of cordyceps and 2 capsules of a mushroom blend each day, but I make sure I do not take them too close to the time I take the cancer therapy medication. I just don't want to have too much in my stomach at once. Again, who knows if they will help? But I figured it couldn't hurt to share the information.
Hoping the best for you and all the others battling this crazy disease.
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@choosinghope im the same age as you and I had the same job! I had neutropenia but it never caused any issues BUT I went back to work part time at first as I was really tired and had to build up my stamina. Is that an option for you if you’re worried?
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I am not sure? Thank you for the suggestion though. It seems fatigue is occurring more and more lately… I am guessing this is something that is normal, as the medication builds in my system? I plan on contacting my union rep real soon to discuss accommodations and options for returning to work. How long did fatigue last for you?
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I’m in Australia so I legally had to be returned to work as I felt able. I rushed back though, keen to get back to “normal” and I honestly never felt 100% again. I just accepted this was my new normal especially since my doctors kept telling me I was fine now! I can’t really advise you though because my cancer was metastatic and, although I suspected it, it wasn’t diagnosed for a few years so I’m sure that played a large part.
After being out of the environment I felt like returning was a sensory overload- noise, movement and constant mental stimulation (as you would know!) it was really hard for me and I wish I took longer off.
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Thank you for mentioning all of this. I actually had some hope that I could just "go back like normal" in August after reading the former post where you mentioned that you went back. I actually daydreamed of going back and having a "normal life" like before the C. But now that I read your last post I am a little discouraged. Ugh. You are the second person who is a teacher that mentioned that you went back, but felt it was a lot to handle. Another teacher posted (on another site) and she said she went back but then had to retire early because it was just too much. I already took off most of the last school year, so they really want me to come back to work this August. I think if I work with the union rep we can come up with something that will allow me the flexibility to change things as necessary. I hope so anyway!
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choosing hope,
I do not have liver mets, but I was a teacher. I think it’s important to base any decisions upon how you feel. While the experience of others is interesting and provides you with a bit of a foundation for decisions, they may not be the same as what you might experience. My bc experience has been pretty unique and I have had far less challenging tx than most but I didn’t know how returning to work would go nor what the course of my bc would be like. My best advice would be to do what makes you happy and if there are problems then you can deal with them as they arise.
I returned to work after a 3 1/2 month leave and worked for ten more years until retirement (stage IV de novo) and I still sub. I love being in the classroom and it worked out for me but had it presented challenges to my health, quitting was always an option. Take care2 -
Thank you very much @exbrnxgrl. It is encouraging to read that you kept working for 10 years and now substitute teach! I will see how it goes. I still plan on moving ahead with some sort of written "escape clause" (lol) with the union rep in case things become too much for me. I know from working pervious years, before the C, that working as a teacher sometimes feels like a boulder at the top of a hill rolling downward. It starts off slow, but quickly picks up speed and then doesn't stop until the bottom (end of the school year). I have concerns that everyone will be accommodating and aware of my needs in the beginning, but as the school year picks up and things become more busy, coworkers and admin may forget and push me into responsibilities that will be too much to handle. Of course, I will remind them. But it won't hurt to have something in writing and backed by the union.
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choosinghope,
With respect to an “escape clause”, if it became medically necessary to quit work, wouldn’t the doctor’s word suffice? If you are truly struggling with fatigue, immunity issues, etc., that should be a no brainer. I was the union rep*from my site so I’ve attended many meetings with respect to this issue.
- California Teachers Association, retired, UDEA -Union District Educators Association
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@exbrnxgrl I am not sure. I would talk with the rep and see what he says. From what I read in the contract they do need medical information to prove my "disability", should I request any type of accommodation or temporary position. I actually just want to speak to the union to get their advice, and to make sure they are aware of what is going on should an issue arise once I return to work.
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sorry to discourage! I was just speaking of my experience and I think it’s good to return with awareness of your needs and abilities. I was limping along.
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@margesimpson no worries! I am happy you shared your experience with me. Thank you!
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From what I have read on this topic, you may have to work with your doctor as well to ensure that what they write supports the accommodation. Depending on the MO (medical oncologist), sometimes they're not thinking of the audience that they are writing for, and depending on the entity that is approving/denying, that can make a meaningful difference. Many MOs though, when you communicate your needs/experience to them, will be more than happy to work with you on that. So glad to hear that you have the union rep that is helping you with this. You may have already looked at this, but this is a good resource as you consider the accommodations you might want.
Also if you want something a bit more concise and to the point/accessible, this article outlines key policies to know:
Please let us know how it goes with getting your accommodations, and how you continue feeling (emotionally and physically). ❤️1 -
choosinghope,
Sounds like a plan! My only word of advice, especially if you haven’t gotten your doctor’s paperwork yet, would be to be very circumspect if you speak to your principal or admin, about your medical condition. Take care.
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Popping in to share my good news on a recent follow up scan of my liver. The small lesion that was on the last scan is no longer visible on the MRI and everything looked normal after my gallbladder surgery. I know others have had the good fortune of disappearing lesions as well, which was encouraging to me as I waited for my scan.
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Hi Bossmon24,
I have just very recently started following this thread a bit more closely as I have recently progressed with liver mets, but I wanted to give you some words of encouragement and hopefully provide some hope. I know when I was first diagnosed I was terrified and looking for long term success stories.
I was diagnosed DeNovo in 2017 with lung mets. I was 47 years old. I have had 6 lines of treatment and will be moving to my 7th line this week. My first intravenous chemo was Enhertu, which I started in April of 2023. My third line treatment of Kisqali, letrozole, and monthly Zoladex injections has been my most effective treatment to date. It was effective for me for 3.5 years, with a very good quality of life. My quality of life has actually been very good throughout my entire journey.
For reference my treatments have included
- Tamoxifen - 2 months, not effective for me
- Xeloda - 1 year. I found it quite manageable
- Kisqali Combination - see above
- Faslodex - 1 year
- CMF - 3 months - not effective for me
- Enhurtu - 15 months. Although this treatment had the most side effects, (nausea, fatigue, some hair loss) I would still consider it fairly manageable.
- Will be starting Taxol tomorrow.
Two of the treatments (Kisqali, and Enhertu were not even fully approved when I was diagnosed.
There are many great threads within this community, with members who are very knowledgeable and supportive. I’m not an active poster, but I follow on a consistent basis.
I hope this gives a little bit of hope. I know exactly how you are feeling right now, and it’s a scary place to be. Although liver mets are new to me, if I can answer any questions, I am happy to do so.
Anna
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missmonty, your post is encouraging at a time when I can really use it. I’ve had great response to several treatments which have lasted a good number of years. Current treatment is Xeloda which I’ve been on since 2020 and now there’s progression to several vertebrae. My onc is having me stay on Xeloda and have the spine areas radiated. We don’t know how long this will last but think it’s the right move for now. So of course I’m concerned for the next possible treatment which may be iv chemo. I’m not looking forward to that but will do what’s necessary. Your post helps me a lot. I’ve been unfortunate to get a diagnosis of bone mets but fortunate to have good response to different treatments. I still want more years, good years.
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Sending you All lots and lots of love and strength. So many treatments available, and more on the horizon!!
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Hi to Miss Monty & The Divine Mrs M. Unfortunately, I went through 7 treatments since liver mets appeared in 2022. Some were just one or two doses (Keytruda trial, Enhertu). Right now, capecitabine/Xeloda continues despite minor signs of progression seen on MRI in late July.
That therapy had a weeks long interruption due to a hip replacement last spring. When it was resumed, I felt what I assumed to be "tumor flare". With oral chemo back on the job killing tumor cells, there was pressure on my diaphragm for 24-48 hours. I'm trying a slightly higher dose again.
However, after only 2 days the familiar blisters under the skin of my thumb and index finger appeared. I was putting diclofenac gel on palms and soles twice a day. As a retired pharmacist, I decided to add a 3rd application. Imaging will occur again in late September. If it fails, I'll go to IV, perhaps eribulin…
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Divinemrsm,…I’m so glad I could provide some encouragement to you. When I was first diagnosed you were definitely one of the members who gave me hope for longer term survival. Your posts have been so helpful. 💕
Now I’m looking for some renewed hope. After a stable CT Scan in June noting only my stable lung nodules and no evidence of metastatic disease in the liver, I now have two large lesions…6cm and 4 cm in my liver. These were discovered by unusually high ALT/AST levels which prompted an ultrasound for further investigation. I was shocked. My oncologist was as well, as up until now, my cancer had been described as somewhat “indolent”. He was not expecting liver mets. I do not have any symptoms at the moment and my synthetic liver function tests are normal. I also have a biopsy scheduled for next week.I start weekly Taxol tomorrow at 70% of the lower weekly dose. Will increase the dose as long as my enzyme levels start to decrease. If anyone can comment on some success with rather aggressive progression and Taxol getting things under control, I would really appreciate it. I’ve been at this for 7 years, and although I have had progression over the past 7 years, I am feeling a bit like a fish out of water right now.
Thanks in advance for any insight.
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Hi vlnrph. How long have you been taking Xeloda? I initially had “mixed” results, with some lung nodules growing slightly, and others decreasing in size. I understand this can happen with Xeloda. After the first three months, I was stable until I started to some minor progression at the one year mark. At that time, my oncologist said another three months on Xeloda would be a reasonable decision, however we made the change to Kisqali as he wanted to get me on the drug under the compassionate care program with the drug company. I was still pre-menopausal at the time and Kisqali had just been approved for pre-menopausal patients at the time.
Hoping you start to see good results with Xeloda.
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MissMonty,
It seems odd that liver mets would be picked up by ultrasound and not by a CT, which presumably is more sensitive, or did I understand that part wrong? Of course livers can have a lot of lesions like hemangiomas, cysts, etc that aren't mets. It's important that you are getting the biopsy, but if you are starting taxol before that, how would you tell if the mets are responding/shrinking, surely they can't just rely on ultrasound? Could you liver enzymes be high for some other reason?
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Hi Cure-ious,
No, you read that correctly. I have CT Scans every three months, which have never reported any liver involvement, including my last one on June 20th. The only thing ever indicated is a 2.5cm stable cyst which has been there and stable since 2018.
I did routine pre-chemo blood work on August 2nd which indicated elevated AST/ALT….in the 100’s. Throughout my time on Enhertu, my numbers would occasionally increase (up to about 60) from time to time, but always returned to normal. It was never a concern. I did repeat blood work on August 6th, and everyone was expecting my numbers to return to normal. They went up again…into the high 200’s. These blood tests ruled out Hepatitis which could have been the cause of elevated liver enzymes. The ultrasound was ordered to investigate further. My oncologist was not expecting cancer. I think he was expecting perhaps scarring on the liver from drug toxicity and I would just take a longer break from Enhertu.
I will only have a week between my first Taxol infusion and the biopsy, and my results should be available the following week. In the meantime, weekly bloodwork will be the primary tool to see if I am responding to Taxol. I have a CT Scan scheduled for the last week of September. (7 weeks out from the ultrasound)
I think the primary concern is that the cancer has morphed into Triple Negative. If in fact the tumours were not there in June, the aggressive progression in such a short period of time could be consistent with Triple Negative. I am anxious to get the results of the biopsy. I am also relieved that intervention happened so quickly and am starting a new treatment.
Sorry for the long post. Just wanted to give a better background of the situation. After 7 years of things being relatively “routine” (if there is such a thing in the cancer world) this has really thrown me off my game.
Anna
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Hi Anna
Sorry to hear about your liver issues.
Any option for surgery? I thought you mentioned being in Ontario at one point? UHN and Princess Margaret are doing cutting edge procedures right now for liver mets. A friend of mine has had multiple resections for liver involvement. Maybe get a second opinion if you haven’t already?
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MissMonty,
So, if the cancer in the liver morphed, there is quite a bit of anecdotal evidence that ER-positive tumors that have lost ER expression are different molecularly from triple negative, and in particular are more sensitive to immunotherapy.
A recent trial tested adding the histone modifying drug entinostat along with two standard checkpoint inhibitors and got a 40% response for TNBC in phase one, that trial ended but they said a phase two will begin by the end of the year.
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Hi mswife, I hope you’re doing well. Sorry I missed your dm back in June. I had just left that day for a two week trip to BC.
I am in Toronto and being treated at Princess Margaret. My oncologist and I briefly discussed targeted treatments on Friday. Could be an option down the road, but he wants to get Taxol started ASAP to at the very least slow down the progression in the liver and determine exactly what we are dealing with, then based on the biopsy.Was your friend dealing with liver mets, or primary liver cancer?
I am confident that if the team feels targeted intervention could be effective, they will do it. I hope so anyway. I will be bringing it up at every appointment. I had SBRT to a persistent lung nodule in 2020, and when that nodule returned and had grown to almost 4cm very close to an artery. I had a a lobectomy of the right upper lobe in September of 2022.
Anna
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that sounds like a great plan, knock things back with the taxol and then go from there.
My friend has mets to her liver - youngish and otherwise well so they went for it. She had to have chemo first to shrink the spots - very frustrating having to wait 6 months but she’s doing well 18 months out from surgery.
you’re in great hands at Princess Margaret - UHN was recently named the #3 hospital in the world, after Mayo and Cleveland clinic!1 -
This is a very informative thread. Sounds like there are many treatment options, which I’m glad to hear.
I’m relatively new to this, diagnosed with bone and liver mets from the start. A recent CT scan showed new/larger liver mets— one is 10cm. Today I got blood test results and ALP and ALT are kinda skyrocketing.
I have a MO appointment Wednesday. We will see what the plan is.
I was very interested in the discussion up above about working vs not working. My work area recently had a lot of new work come its way unexpectedly, and I have a new manager who is piling it on. He’s supportive of me taking as much sick leave as I need, it is gradually running out though. I’m almost welcoming an excuse to pull the parachute cord and go on medical retirement.
in everyone’s pockets.
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Just got off the phone with the cancer patient support line. I was on my “week off” from kisqali; based on my blood test results, I’m not to restart it until I hear from the doctor, which will likely be next week.
Looks like I’m in for some changes to the treatment routine. I’ll be spending the weekend distracting myself and babying my liver.1 -
Saw the medical oncologist for the discussion of treatment options, and I'm comfortable going forward with some chemo. Xeloda it is. It might be a good way to smack down those liver mets in a hurry. I hope so. A scan to follow in about two months to check on things, and I'll know more then.
Now it's time to check out Xeloda side effects. I start next week. It sounds like it isn't too harsh for most patients….
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doodler, I hope Xeloda is good to you. Tho I’m dealing with bone and not liver mets, Xeloda has been my treatment for the past four years. There’s been some recent progression to the spine so I had five rounds of radiation and we will scan next month to see if that’s enough to hold the mets back and stay on Xeloda. While everyone is different, for me, it’s been a very tolerable drug which is why my onc and I aren’t ready to move on from it. There’s a xeloda thread on here somewhere with lots of insight.
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