How are people with liver mets doing?
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letmywifelive- may xeloda be as good to your wife as it has been to me.
There is a lot of great support and information on this thread.
Just got my CT scan results back and I am still NED. I am so very thankful that xeloda is working for me.
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left foot -- wooohooo. here's to many more good scans on xeloda!
>Z<
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Leftfoot, that's fantastic. How long have you been on Xeloda?
So after a couple years of NEAD, my scan finally showed what the slowly rising TMs and my intuition had been saying for a year, that the liver tumors were waking up. After an exhausting round of appointments, research, and discussion -- which included considering various trials -- my onc and I decided on Faslodex + Afinitor. We agreed that Fas would be a good replacement for letrozole since it is a different kind of anti-estrogen. I told her I wanted dual therapy, and her gut and my gut agreed that Afinitor was it. It will address the important PI3K/mTOR pathway, and replace Ibrance as a different kind of targeted therapy. My onc did point out that we do not have proof that Af prolongs life, but we agreed that it can at least prolong the time a patient is not suffering from the effects of cancer, and that is important. It is possible that it does prolong life for some, but that statistically it is difficult to prove because of confounding factors; i.e. many treatments over a long time. As far as the notorious mouth sores, a recent trial showed dexamethasone mouth wash to be very effective, so I am using that. Also, we are starting with a lower dose and will increase it after my body has a chance to adjust.
I had a three-week washout period (except for a few days I cheated) between the old combo and the new. It started before my scan when my onc wanted to see how much drugs vs. cancer could be causing fatigue, and then I stayed off because I was considering a trial that required a two-week washout. I also thought it would be good to give my body a break before starting the new drugs. Now I wish I had not done that, because I am feeling my liver more, and I'm worried that the cancer may be picking up speed. The interventional radiologist said that if the tumors are causing pain, that is a signal that something needs to be done. Hurry up and start working, drugs!
The radiologist says I am a good candidate for radioembolization (I think that is Y90?) because I am otherwise healthy and the disease is only in the liver. I was surprised to learn this is available to me, as I had thought local treatments were not used for multi-focal disease. But this treatment does not aim at and zap individual tumors. It is more like radiating the liver from the inside, and since the radioactive beads are placed in the bloodstream, more of them go to tumors because tumors have more blood supply. They would probably do two procedures, treating only half the liver at a time. That way if something goes wrong, the whole liver is not affected. The radiologist and my onc agree that if my current drugs don't do the job, we can proceed with the radio treatment as an alternative to chemo. It gives me another weapon in the arsenal. I am supposed to get a baseline CT with contrast or an MRI for this, and I don't know how to choose. Any ideas? By the way, neither doctor seemed interested in a liver biopsy last week, but I suppose if things worsen quickly, they may reconsider.
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Andkeepgoing,
Hoping that your new treatment plan will give you long lasting stability.
We visit UCSF here and the MO is the head of Phase 1 - 2 clinical trials. She said many times that immunotherapy really has not worked for ER+ disease yet. So the option really are either targeted therapies, hormonal or chemo at this time. She did mention that there are promising treatments waiting to come out in next one year or so but did not specify what those are. Hopefully she was not telling all that just to make us feel better.
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Shetland, I am also considering radioembolization. I had two liver tumors but PET was only picking up on. So the radiologist did an MRI of the liver and found to two lesions. He deciding I should do microwave ablation because it was a very simple procedure. This was right at Thanksgiving, then Christmas... So In January, I told my MO that I wanted to proceed with the ablation. The radiologist said he needed to get a new MRI since two months had passed. Well the new MRI pick up a total of 4 lesions. So they ruled me out for ablation. I had my PET just days before the second MRI, and the PET was still just showing one!!! The MRI is so much better that the PET.
The radioemebolization procedure that is offered is called SIRT....Selective Internal Radiation Therapy using microspheres. It's basically the same as Y90. Keep us updated and let us know if you choose Y-90.
Wishing you all the best!
Robin
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Shetland and Robin, I am planning to do radioembolization, too. My baseline scans are on the 23rd. I am having a CT as usual (do them every three months regardless) and didn't know of any other options for that. I have no progression (or not any I know of) but my onc brought it up as an option to add something more to what carbo is doing. I haven't talked in detail with anyone about it yet as we are waiting to look at the scans first but I can't think of any reason I don't want to go for it at this time. Best wishes to you both.
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Shetland- I have been on Xeloda since December of 2012.
At first it was combined with s Her2+ targeted therapy but as of 3/2016 I've only been on Xeloda.
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leftfootfootforward,
Congratulations on wonderful scan results.
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There are certainly local treatments for liver tumors that work if you have more than 2 tumors. TACE is one of them. Very interested that so many people are pursuing the local treatments for liver tumors. It seems local treatment of metastatic disease is being used more as they understand the procedures and more confidence in them.
Very interested in your thought process and how things go.
>Z<
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According to the radiologist, this treatment can be a good one for liver-dominant or liver-only disease. It sounds like it can buy you a chunk of time the same way a chemo would. I feel like if and when he and my onc say we should do it, I am ready, just because I trust them and they are at an NCCN institution. It is a treatment used successfully for primary liver cancer, and some specialists like him are now finding success for healthy bc patients with liver mets. Kaayborg and Robin, let's keep sharing about this. Everyone, shall I start a liver radioembolization thread, or shall we keep discussing it here? I guess I need to learn more about SIRT, Y90, and TACE, and ask which my radiologist does.
So Robin, I understand that your MRI showed more lesions than the PET. Even if you get a CT at the same time as a PET, it is a poor-quality CT as opposed to a CT with contrast. Do you know why they used MRI instead of CT with contrast? What is the experience of the MRI like? I have had breast MRI but not liver. If it really doesn't matter to the doctor which we do, I guess I will consider my comfort. Kaayborg, is the idea to get you from stable to NED if possible, or at least reduce the tumor burden to put you in a safer place?
LMWL, thanks for sharing what your UCSF onc said: Promising new treatments coming, but maybe not immune therapy. It's helpful to hear that state of the research summed up by such a person. Leftfoot, that's great. You are coming up on a year with just Xeloda.
I also meant to say that a good feature of my new treatment plan is that if I reach a point where the shots are just too much, I can trade Fas for Aromasin. And if Afinitor gets too hard, I can drop it and just do Faslodex.
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There is a thread that is moderately active that looks at local treatment of liver mets. I keep one eye on it. I do think we need a place to discuss this strategy. Local treatment will be increasingly important for many of us.
https://community.breastcancer.org/forum/8/topics/...
My complementary onc wants me to do local hyperthermia on the remain mets I have even though they are dormant. Possibly whole body hyperthermia as well.
Like Y90/SIRT TACE and friends it is a local treatment but it can be done on lymph nodes, liver, bone mets etc. Historically it's been done on mets that are close to the surface but they think they have figured out how to do deeper mets. I'll be traveling to Canada for this. Not FDA approved, but not chemo.
>Z<
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Shetland, I don't know any specifics now. She mentioned it to me at my last appt. as something I'd be a good candidate for, explaining it has been used for primary liver cancer but they are now trying it with good results for breast cancer in the liver. She mentioned it as additional, along with chemo and seemed most interested in doing it if my scans remained stable but I'm not sure why I doubt the goal is to get to NED (I've got so many, many lesions, so much smaller but still so large) but I do wonder if she isn't thinking that this may get the number of my mets reduced to a degree that it may open me up to other localized treatments later on. You are helping me think of good questions to ask when I meet with her next on the 27th.
I'm good with discussing here but if it goes elsewhere let me know and I'll follow along.
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Z- thanks for the link. I'm still in the middle of reading through it but definitely a thread I will follow.
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Shetland, The head of Radiology at Sarah Canon Cancer said he wanted me to do a MRI because it is a much clearer picture and is superior to PET and CT. The MRI was no more trouble that a PET. You where earplugs because of all the loud noise the MRI makes. It takes about 25 minutes.
Z- thanks for the thread.
Robin
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remembering back to my liver resection, the liver specialist ordered a MRI of my liver even though he had a recent CT scan. It was 1.5 years ago but I remember him saying he preferred the ZmRI to the CT of PET scan
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LMWL: Thanks for the thoughts and update from your onc! On the bright side, the trial cleaned up my bone mets - not something I read while I was focusing on the progression bit - so hopefully they stay quiet for now. I think I spent a good part of the past few weeks bending at the hip to experience 'less pain' and then 'no pain' and tried twisting and turning a few other spots to check things out.
Immunotherapy is not where the current therapies are, but they have been making strides in recent years. There were some trials (Keynote-012 was one of them) which had relatively good success with TNBC. The trial I was on at Princess Margaret CC is run by two co-directors who have been working in the immunotherapy and anti-cancer drug development fields for years. One was the chair of some ASCO committees and is the Head of the Phase I trials at PMCC; the other is the Chair of the Cancer Immunotherapy Steering Committee of the AACR, and sits on a bunch of other boards. They have also indicated that immunotherapy has not been too successful with HR+ BCs so far, but they and other researchers at the cancer centre are investigating a number of new drugs and drug combinations. So, I don't think your wife's onc was just trying to alleviate your concerns. One thing they did say is that when the immunotherapy drugs work, they work for a long time.
With that said, I am almost triple negative, and possibly going HER2+ at this point, so perhaps I got somewhat of a response because of that, or the drug combo on the trial did the job to make my immune system 'see' the cancer cells in my bones.
All the best for your wife - and make sure she lathers on the hand/foot cream while she is on Xeloda to avoid or minimize the hand/foot syndrome!
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Here's an immunotherapy clinical trial at MSKCC that does accept ERPR+ HER2- patients. The cancer can be ERPR+ but it has to be mesothelin expressing. There are actually several CAR-T trials for breast cancer that is mesothelin expressing, including one specifically for people with pleural infusions. The current trials for MBC expressing, as of 18 months ago, have been summarized by Cancer Commons.
This interesting immunotherapy trial combines abemaciclib with keytruda. So that is a CDK 4/6 inhibitor and an immunotherapy treatment (PD-1 Inhibitor). For the folks in California, this trial is at UCSF. Principle Investigator ... Hope Rugo!! It's phase I, but both abemaciclib and keytrude are past phase III clinical trials ... it's the combination that is phase I.
I found this table of Immunotherapy trials for ERPR+ cancer on Cancer Commons. The response rates are low for immunotherapy, particularly with ERPR+ cancer, but they increase when immunotherapy is combined with other drugs.
NCT02453620 Opdivo combined with Ipilimumab (immune), entinostat (targeted) for ER+/HER2-
NCT02309177 Opdivo combined with Nab-paclitaxel (chemo) for ER+/HER2-
NCT02648477 Keytruda combined with endocrine therapy for ER+/HER2-
NCT02411656 Keytruda alone for inflammatory BC
NCT02643303 Durvalumab combined with Tremelimumab vaccine for all types of BC
NCT01772004 Avelumab alone for all types of BC
There will be more and more options. Let's keep putting them out here as they come. They will be right for someone ...
>Z<
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Hmm, that's two votes for MRI (Robin and Leftfootforward). The radiologist said CT, and when I groaned and told him how strongly the contrast affected me, then he offered MRI. Maybe it is more expensive and they need a reason to offer it?
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Here is another immunotherapy trial for ERPR+ cancer. It combines Ibrance letrozol and Keytruda. You have to have progressed on Ibrance. Only Trial site is at City of Hope in California.
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Hello everyone,
I'm on here for my mom. The information on this thread is wonderful. My mom is triple negative. Diagnosed with liver Mets in September. She had one 7cm in her liver. Her blood was so bad they didn't even want to do the initial chemo. After her first chemo her tumor shrank by 40 percent. It was a very weak dose. After her chemo, she is Ned. The doctors were stunned. She goes back this week to check things out. I just wish that she could get some kind of preventative medicine. It's shitty that tnbc has nothing like hormonals. Unless there is some kind of trials? Not sure if anyone knows about this.
I would like her to see a holistic doctor, but she isn't into the idea. Just to improve her diet. I bought some of those chlorella (algea pills). It's supposed to be good to detoxify and alkalize the body. However I'm a little Leary, thinking well maybe I don't want to wake up any dormant cells.
Zarovka I think you should have been a doctor!! You are very knowledgeable..I enjoy reading your research.
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Christina -
You kinda have to trust that your mom knows what she needs. Obviously, she has made a lot of good decisions so far. Those results are amazing and I like her doctor's approach. We're learning that we don't really need massive chemo bombs but it takes some courage and skill to take a light touch with chemo.
The best thing you can do is be a sounding board ... listen to her worries and concerns. What does she think she has done right? What would she like to learn more about? Help her figure that out.
She likes standard of care, and medical doctors so she may like Anti-Cancer A New Way of Life. It talks about diet and exercise and stress and how that all can help or hurt you in your healing . It's written by a doctor who a brain tumor so it is informed by both a personal and medical perspective. Dr. Servan Schreibner makes a good argument for looking at cancer treatment holistically, but he makes the argument medically.
You are curious about treatments and options for your Mom and this is good. It will allow you to be there with answers and ideas when you talk to your Mom. BestBird is one of our members and she has written the best and most current Guide to MBC. That is where to start.
Your mom does have an increasing number of options, including vaccines and immunotherapy. These treatments are working a whole lot better on TNBC than hormone positive cancer. They tend to be safest and most effective with low or no tumor load. Vaccines are most effective in patients who are NED. I am not TNBC, so I don't have the info at my fingertips. However, if you google and read about TNBC and immunotherapy and TNBC/vaccines you will quickly see that you have options.
If you continue to be interested, get to an NCI designated cancer center for a second opinion with someone knowledgeable in TNBC specifically. It is worth doing now, even though your Mom is not in immediate need of treatment. It takes a while to find the right doctor, make an appointment, get established.
Once you have that second opinion lined up, you are ready for the next crisis even if you don't get an immediate treatment option. Unfortunately we have to always be prepared for something to go wrong because it does tend to happen.
Best of luck,
>Z<
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left foot--yay!!
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Christina, your mom's response to chemo is amazing! That is a wonderful sign for future treatment as well. I am trip neg as well with liver mets only. My onc's recommendation is to stick with what works until it doesn't, so as long as your mom tolerated chemo well, it may be best to wait on immunotherapy trials. That is what I have decided to do anyway. I'll have been on the same chemo for 2 years this August and hope to get several more years out of it. However, immuno is what I hope to try next when I have progression. Check out the thread for trip neg if you haven't found it already. There's a great group of ladies there as well.
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zarovka- Thanks for the information. I will do some googling about the immunotherapy. You are right , we need to be prepared for progression. I have a purchased a copy of anti-cancer. I especially like the food chart.
Kay- I do think they are focusing on triple negative more than they used to. I think they will make some strides. Ya my moms oncologist doesn't want to stay with the same type of chemo because it tends to build up in the liver. She was on one that is three in one. It was a harsh chemo, although she had no reactions. Her oncologist says they have many different ones to offer if one fails. Is yours a pill form or intervenus? She goes back on the 15th. It will be thirty days since her last clean scan. She isn't on anything at the moment. I was researching and there is a compound in parsley, celery , broccoli and thyme that is very beneficial for triple negative. It stops the growth of cancer and kills cancer cells.
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Bstein so sorry you are here now. You know having "a team" as they are called, not so much one that I chose, but the doctors chose could be a good thing and sometimes not so good, because they give each other courtesies, a bunch of BS if you ask me, and therefore thoughts could be deferred shall we say?
Shetland what about Xeloda, is that an option? For sure, first Xray, CT then Mri then maybe Pet/Ct. I know someone with Prostate Cancer that I am helping out, the way the found a met was with Pet/CT but now when I told him to ask it's been 4 mos since original scan they should do some kind of scan, they only did an MRI which did find another met in the ribs, but still refused to do a Pet/CT? Did you ever? At Sloan, mind you. I don't get it. The guy has excellent insurance, don't trust doctors. Period.
Robin I also try, but they have a way to make sure you don't ask many questions. Once in a while one is very lucky and you find a doc that actually appreciates someone that knows things. I tell you I go through this every day re:my DD. But also in any medical setting. I have pushed myself because of some wonderful ladies here pushing me, and I do try to get a balance between not stepping on toes and saying what you want. It's not easy, that's for sure.
It's always a good idea to keep a copy of all scan reports, CD's, Blood tests. If you have that you could just set up an appointment yourself, you should enumerate the treatments you were on and for how long. The best thing would be a recommendation from someone you know. That's the hard part.
Kaayborg why not just do it, these things proliferate like crazy.
I am so mad thinking back, how Dani had 2 lesions, and Onco was pondering what to do, meanwhile I was trying to find another onco, 4 weeks later, these things were all over the liver, and still are!
Hey Z, how on earth do you manage to do all this homework?? With the kids? I can barely catch up to you.
Cristina good to be prepared. good luck.
I've been asking for some kind of scan to really see what's going on with the liver, ONCO keeps saying they saw what they need to see with the Pet/CT, should i still ask for the MRI? what's gonna change?
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Hi everyone, just wanted to check in. Thank you for all of the wonderful info that has been posted recently! I think for me, it gives me a renewed sense of hope seeing all of the good things coming. I just started the TRINITI-1 on Thursday. A/A plus ribociclib. I also was prescribed a mouthwash which seems to be helping. I go back 14 days for blood work and then will scan at the 2 month mark. I asked if it would work after failing Ibrance and was told they just don't know yet. I am nervous, but happy to get moving on another treatment option. I hope everyone is well!
Alissa
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Alissa - A/A should work after ibrance and some other A/I. The question is whether you get the ribociclib and whether it adds addtional benefit. Thank you for checking in. Many here are interested in how this trials go.
>Z<
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I have not been on this thread in a while. I see that there are a few of you looking into the Y90 procedure. I did that procedure in December of 2015 after chemo failed to shrink my 2 liver tumors. The procedure itself was not very hard but the recovery was much more difficult than I was prepared for. Lots of nausea and extreme fatigue for weeks. Most people that I have talked with have had the same recovery issues. I do feel the procedure was a success as it got rid of one of my 2 tumors and shrank the second one. There is only one drawback from my procedure that just happened to me the past month. I had a gallbladder attack and had to have it removed. They did a pathology report on it and the exact wording is below. "The etiology of the spherical foreign bodies is unclear, but may be related to prior procedure or treatment". I do believe my healthy gall bladder was damaged by this treatment.
Do I consider the Y90 a success? Yes of course since I have one less tumor over a year later. Would I do it again? Not so sure. I would have to think about it really hard.
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BabyRuth, Thank you for posting your experience with Y90. I have been debating for a while, and I had heard that the recovery phase was miserable with nausea and extreme fatigue. My MO suggested I wait and see what the meds do. She said if I can get rid of 2 liver mets through Letrozole, then I could go ahead and do microwave ablation on the other 2. The radiologist assures me microwave ablation is a lot easier than Y90/SIRT. My MO said she had a patient with lots of liver mets and had the SIRT procedure and passed away because it put her in liver failure. I do not know any details about her situation, but that did scare the crap out of me. I am leaning towards waiting at this point.
Robin
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Christina, my chemo is IV. Best wishes in finding the best new direction for your mom.
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