How are people with liver mets doing?
Comments
-
Regarding treating your diffuse liver mets: For what it's worth, my onc and the liver specialist interventional radiologist at an NCCN center have recommended that I stay with the systemic treatment (Xeloda) that is working, and saveY90 radiation for later. But they are keeping an eye on me so as not to miss the window of opportunity. The Y90 is the one local treatment they say can be used for diffuse mets because it does not simply target a particular tumor. As far as whether to use local treatment when there are mets other places, that seems to be the party line but I know exceptions can be made. You should be generally in good health for Y90 to minimize the risk of problems.
0 -
Artistatheart said above, “Candy, we all feel insecure among many other emotions, your diagnosis is just newer so still fresh and raw I am sure. I hope as you get new information and treatment you can start feeling a little more relaxed....“ I think this is an important insight. When new to mbc we are working on developing important relationships with doctors and other caregivers, getting oriented with how things work at our institution, and trying to climb the steep learning curve of mbc treatment options. All while coping with the emotional weight of the diagnosis. I do agree that with time some of this eases. Some of us start to feel like we have at least some welcome periods of relative boredom, like yeah I know the drill, it sucks, and life is going on anyway. It really helps if you find providers whom you can trust and who welcome your involvement in your care.
0 -
Shetland Pony and Artistatheart--
Thank you for your words of wisdom. I think it is true I am getting oriented to all this. The emotional weight has been hard and I don't really have a solid person to cry on their shoulder and just discuss it all. I like my MO, but I think I am getting used to him and he is getting used to me. I want to be involved in all aspects of my care ( my controlling nature ) and I think my MO is used to patients who just do as he says and does not question. I am the first one in my family with cancer so I have not been around someone close that was going through this. This--the treatments, the emotions, etc- is new. I kind of feel like I have had to feel my way through without any help. I live in a rural area and when I was first diagnosed was not given any information on what to expect---support groups, how to get a wig ( when I had chemo ), nutrition questions, etc. I just started asking questions and making phone calls. I have heard of some of the larger cancer centers around the country have a whole support system for their patients - nutritionists, therapists, social services--that are included in the patients visits. We have none of that. I am feeling my way in the dark. Thank goodness I found this group---a light in the darkness. I have learned so much by reading everyones posts. Bless you all.
0 -
Candy this forum has been a life saver for me too. And, I'm not a newbie. I've been dealing with BC and MBC for 25 years. But, this DX one year ago was the worst. MBC in lung, chest and liver. I needed help, this type of help. It's been invaluable to me to be able to write my thoughts, feelings and questions here. Knowing there is no judgement only experience and compassion.
0 -
Yeah, every time my cancer takes a right turn and I need to change treatments, I am a total newbie as well as total wreck. Thank god for this forum.
>Z<
0 -
My scan today showed progression in my liver with largest lesion being 7.3 cm and "multiple " more. Gem/Carbo isn't working. Idon't even know what'll be next. I meet with my oncologist next week. I'm triple negative mets since July. This is going too fast.
0 -
Kaylynne - I am devastated to hear the news. First and foremost I send great waves of prayers and support as you deal with this. When you are ready for an action plan, keep in mind that TNBC is responding to immunotherapy and immunotherapy trials should be on your radar.
This is just one of several trials that is getting a heck of a response. Although the initial group was melanoma, they have opened up an arm for TNBC because TNBC is similarly immunogenic (visible to the adaptive immune system).
The results reported in 2016 on an initial group of 19 pts who were treatment-naive for advanced melanoma, are 4 CRs, 7 PRs, and 3 SDs. Basically 14 of 19 people responded with stable disease or better. Normally we are seeing 20% response rates to PDL-1 inhibition. If I had TNBC, I would be looking at this trial.
Anti-PD-1 in combination with IDO inhibitor (epacadostat)
Indoleamine 2,3-dioxygenase 1 (IDO) is an immunosuppressive enzyme that modulates T-cell function (10). It catalyses the cleavage of L-tryptophan, with the metabolites promoting regulatory T-cell generation and blocking of effector T-cell activation, which can contribute to immune surveillance avoidance by tumour cells. Epacadostat is a potent and selective inhibitor of IDO which, combined with ipilimumab and pembrolizumab (11) in proof-of-concept studies, has shown strong efficacy with improved response rates compared with prior data for immune checkpoint inhibitors alone, with minimal additional toxicity. Recently, a large programme of trials of epacadostat plus pembrolizumab was initiated in patients across five tumour types: metastatic melanoma, non-small cell lung cancer, bladder cancer, renal cell carcinoma, and squamous cell carcinoma of the head and neck. Combinations of epacadostat plus nivolumab are also in clinical trials.
This is the trial.
https://clinicaltrials.gov/ct2/show/NCT02178722
>Z<
0 -
Kaylynne I am so sorry and sad to hear of your progression. I will be thinking of you and send healing energy and support.
0 -
kaylynne: maybe look at immu132. It looks like you have tried two different chemos. FDA approved immu132 for a third agent without being in a trial. Have you looked into PARPs to see if you are a candidate?
sorry carbo/gem did not work for you. Praying you find the next treatment that works soon
0 -
Hi all, hoping you can give me some suggestions to ask my MO tomorrow. My scan report just posted and says “appears to be an increase in size and number of liver lesions” with the largest increasing from 2.2x2.0 to 2.8x2.0.
Ive been on faslodex/ibrance for 7 months and letrozole before that. No other tumors and the scan reported my primary breast cancer cant be seen. All labs are normal. My quality of life is good, just got a promotion at work and caring for my 4 year old.
So part of me wants to stick with hormonals for QOL. The other part of me is p-ssed at these liver tumors and am ready to be more aggressive, especially while I feel OK.
Im thinking of perhaps asking for a biopsy of this largest tumor, as its always been my problem. And my last was over 2 years ago and not of that lesion. Any other thoughts? Or things I should ask about? Thank you!!
Jamie
0 -
Kaylynne so sorry to hear that. What's the plan? There are so many other tx to use, but big decisions. Keeping you close.
Yeeh to promotion, ultimately you gonna make the decision, but there is a whole arsenal for you.
0 -
Kaylynne so sorry to hear that. What's the plan? There are so many other tx to use, but big decisions. Keeping you close.
Yeeh to promotion, ultimately you gonna make the decision, but there is a whole arsenal for you.
0 -
maybe you could ask about local treatment, like y90. I had it done and it worked really well for me.
0 -
jamiemarie consider local treatment for sure. Y90 or TACE. You need to go see a specialist, an interventional radiologist who does one or the other of these treatments. I think local liver treatment is underutilized with liver progression after a first or second line hormonal fails. The reason is that MO's are not informed as to when to use them and fail to refer patients. It's an important tool that can be repeated.
After that consider exemestane or a trial of a next generation hormone suppression treatment. The MO at Mayo felt very strongly that women with estrogen receptor positive cancer should be on hormonal treatments as long as possible. Your instincts to stick with hormone suppression jive with the current thinking and you do have options. Bestbird does a good job of laying out the sequence of FDA approved hormonal treatments in her guide. You need a copy of this guide. I am not familiar with the trials of next generation hormonals but they were bullish on these trials at Mayo last week.
Cancer Commons and Emerging Medicine are free consulting services that place patients with trials. I like it that they work nationally and are not associated with a particular institutions. Doctors are strongly incentivized to direct people to the trials at their institution but that may not be the best trial for you.
Keep in mind that ibrance did not work in trials without hormone suppression, so it may have been the faslodex that failed, not the ibrance. CDK 4/6 inhibitors should be in your toolbox going forward.
Tons of options. But progression is a terrible mental game. You have everyone's support as you plot your next move.
>Z<
0 -
jamiemarie - Grannax has a great idea. Y90 or TACE helps a lot of ladies. If faslodex/ibrance is failing there is also abemaciclib which does not need to be paired with an AI if you are becoming resistant. Talk with your MO about next steps so you have a plan. QOL is important. Lots in your arsenal - stay strong and positive. Kay - sorry to see your progression, please talk with onc about Y90 or any other meds directed at Triple Negative. Z shared some great info, as always.
0 -
Thank you all, youre the best! I almost didnt post, I read daily and think of you all, but I don’t post much, so it felt a little selfish. So thank you again!!
Z, I had taken your advice to others to heart to look at trials before having progression, so I had my eye on this one, which my hospital participates in: https://clinicaltrials.gov/ct2/show/NCT02115282. Especially hearing the warnings on afinitor. Grannax, I’ve been following your amazing results with Y90, so thats something I want to explore too. I recently switched MOs to one closer to me (even tho I loved my previous one). My previous one wasnt too keen when I had asked before, but the head of IR at my new facility specializes in liver tumors, so will definitely ask. Will let you know what my MO suggests!
It just sucks that I go from my first staff meeting in my new position to a doctor appointment to discuss progression! I almost didnt apply for the promotion- what ifs kept running through my head. I could coast in my previous position whereas this will be much more challenging. Part of me wonders if I made a mistake...overall,working helps me feel “normal,” but I’m starting to be aware that stress and overdoing things may not be in my best interest!
0 -
Hartrish: I can’t find anything showing immun-132 has been FDA approved. Would you send me a link or how you know this?
Thanks!!
Ka
0 -
Kaylynne it's still in trial. I believe Kayaaborg tried getting into this trial but they did not accept her and she did not want to wait any longer. Dani was on it in NYC, but like e/t else it did not work. She is not Triple Neg. but Onco was one of the researchers and she said it should work on HER2+ also, unfortunately it did not.
0 -
Kaylynne, I am sorry to hear about your progression and praying you find some good options for your next treatment.
Jamie, wonderful the head of IR specializes in liver tumors. Jackpot there. You didn't make a mistake re: work. If you turned down the promotion, you would likely spend your time feeling down that you "had" to turn it down because of cancer. I was promoted less than 6 months after my stage 4 dx. And, 9 months ago, I made a lateral move to a high potential position that meant "doing my time" again from scratch and working hard in the beginning to build a reputation for myself. There may come a day when you can't handle it all but don't take yourself out of the game prematurely in fear you may not be able to handle it. You may surprise yourself. If you want to stop working or scale back, by all means, do, but if you would like to continue, go for it and take it day by day.
0 -
kaylynne and jamie-holding you in my heart as you transition to your next treatments.
May the force be with you.....MJH
0 -
Ka IMMU-132 targets TROP-2 receptors. Ideally you want to have Caris testing showing that you have the TROP2 receptor, but personally I take those reports with a grain of salt. The expression of receptors can be tricky to test for. IOW I would consult with an expert on that particular drug before I wrote it off due to lack of TROP-2 expression. This is a highly engineered smart bomb and one of those things an average MO may not know how to use.
IMMU-132 hasn't been released but we are expecting it will be released in the spring. Personally, I would push it down the list and wait until it is released and not go into a trial. Trials have constraints that may not be in your best interest. It's the only way to get some next generation treatments, but TNBC has other better options at the moment.
Jamie - your can do spirit will get you through this. take the promotion, seize the day, and you'll be around a long time.
>Z<
0 -
sorry kaylynne: I thought I read where it had been approved. You might be able to get it on compassionate care though. Hoping for approval by the end of first quarter this year.
0 -
Z I sure am taking the F1 report with a grain of salt. Mainly because, evidently the ERS1 has been there from the very beginning, they used my December 2016 liver BX for their test. My tumors have responded a lot to letrozole Ibrance, even though amplification of ERS1 supposedly showing I'm resistant to letrozole.
I think our MBC is multi- talented. The more I read, the more I know how much I don't know. I'm going with logic, if it's still working......don't fix it!
0 -
Thanks everyone for the positive feedback. Z: I plan to talk to my onc about the first trial you mentioned. Hartrish and momall: How does one find out when immu-132 will be FDA approved? Has anyone been on Eribulin and with what results? What about Enzalutamide, an approved drug for prostate cancwer that ws presented at the December San Antonio Breast Cancer Symposium for possible use on TNBC? After reviewing everything, it appears that I have used up all the big guns and that scares the crap out of me. Maybe I should go to Peru...just kidding.
0 -
Kaylynee im going to pm you with some info. Eribulin is good, the other one Dani almost took it, they had done a androgen receptor test, it works if you have AR, but she ended up going on a trial. I don't like trials, IMO i feel when there is a lot going on there is a big risk of things getting out of hand. Listen, as we could all see, basically all tx could be good and not so great, your body gotta click to it, simple. It's a crap shoot.
0 -
Are there any ladies with long term liver mets here? How long have you had liver mets?
I was diagnosed with liver mets on October 2017.
I'm currently doing chemotherapy.
I had pain prior to diagnosis of liver mets (which is how I knew prior to scan).
0 -
Hi!
I think I need a new onco asap. Is there a good forum to ask? Are any of the liver mets people in Boston. I'm at a hospital with liver failure after being great on treatment until early Jan when I took a break for whole brain radiation, liver mets went nuts on cisplatin, but liver function is no longer failing. My onco is doing nothing. Nothing.
TIA
0 -
kaylynne: you might call the drug company for immu132 and ask them. Also what about a PARP, olaparib was approved and seems to work in TNBC with BRAC MUTATIONS.
What about capecitabine? I think kayyborg is or was on eribulin
0 -
Robin - on the pneumonitis - gradually the recovery came but I still deal with inflammation and wheezing in lungs. I use alternative / complementary choices too and perhaps I could credit either the Ojibwa tea I drank for a few weeks or the hemp oil isolate I took. Also I find it very interesting your MO put you back on Faslodex even after progression. I was on Faslo for almost 3 yrs and had progression and want to try it again. My MOs I left behind or who left me behind said no, not w progression but the new MO who is a keepr said it is not against the law or anything. SO I think I want to ask if insurance will pay and if so then let's try it. Right now on aromasin along with mega doses of the best ellagitannins I can use I feel like I am holding my own and most days even improving in the cancer conditions itself. Though after coming off chemo pills and AIs that were harsh for me, the new quality of life sans those in it makes it hard for me to discern what feeling good again feels like compared to feeling cancer sap me of health and energy. But I really want to say I think I am improved in both ways.
KayLynne - imho, having known a few shaman including from South America, seriously, the real ones can help you from where they are to where you are. Spiritual travel is nothing to them. They might scare the beegeez out of you if they made an appearance as say an owl in your rafters or on the back of the recliner. LOL but likely the appearance is not necessary, that would just be grand standing. They also, imho, would not assign a dollar amount to your recovery or even need the money up front. They are medicine people and the medicine is given freely to them to pass on to the ones needing their care. Just saying, imho. Healers, the same. The herbs they offer are not only available through the shaman. There are options. And medicine people from North America can get these herbs for you if that is what you feel led to try. Your path will be clear as you move along to the answer. Maybe Universe is sending you the right one for you, maybe your message is this is an option though you need to seek a wiser choice. I say this knowing full well I could be leading you wrong and this could be your chance. You know the decision is completely yours. So look inside, you know how, I believe you will just know. When we become terrified or desperate that is when we can become objects of prey too. We are also capable of our own magic. I get lost a lot but I believe it is true.
My liver pain is downplayed this last week. There were a few weeks or pretty scary but manageable pain. Not the gnawing of when I found out the lesions were growing. It was the sharp pain of what I hope is apoptosis and necrosis of the cancer cells, I really do hope this. Then a week ago it stopped being sharp and is not gnawing. Some nights I can feel where the lesions are / were and it is tender when I am on my side. I move more carefully. But compared to the sharpness of pain, now I would say it is down by 90%. And I wake in the morning not knowing there are lesions at all, I feel fine unless pants are too much pressure or I have been strenuous. I know healing takes time. My hope is this is healing.
AMW5 - The liver lesions I have were "seeds" in April 2016 which were not reported on that PT CT at all!!!! disclosed as increasing in Nov 2017 then grew by doubling in size every 3 months. I had pain from the beginning. When they get smaller I don't have the same pain. They have done both over these many months. At first the Ibrance / Femara addressed them from lesions and back to seeds. Off that and they grew quick.
Wish I could do Ibrance / Faslodex / Aromasin. sigh.
0 -
Bluebird-DE,
I have been catching up on this thread and find your posts so uplifting. Thank you!!! It's helping me greatly today.
0
