How are people with liver mets doing?
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It is a punch to my heart to read that kaayborg (Bryan’s wife Missy) and Ranjita (wife of letmywifelive) have passed away. Sending deepest condolences.
My Friends, I am going to take a break from this site. It is a hard decision because I care about you all, and the sense of community and the opportunity to learn are good. But at the same time, I need to protect myself from too much sadness and stress, and enjoy my current time of relative health, which I know will not last forever. I may look in now and then, and check my private messages. If I have an important question I will post. I know there are others who will be able to offer advice and support, so it is ok to take a break. It’s a team effort. With thanks and good wishes. Carry on.
ShetlandPony
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PS (for Kaption) Also, supposedly works the other way as well, that is if you just inhibit the HER2 activity, then it can cause the Estrogen receptor activity to go up. They seem to think that you want chemo followed by an AI plus anti-HER2, and they also talk about Nerlynx (not sure what that is, but something relatively new):
Extended therapy with Nerlynx was especially helpful in those with ER-positive disease. On this basis, the FDA approved Nerlynx on July 17, 2017. If additional studies support this use, it should be discussed with all patients who have triple-negative disease, even if they've been through standard treatment and are reluctant to take another drug, Blackwell said.
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Thank you cure-ious. I will certainly read through this info.
My mbc has been complicated because I was first diagnosed as triple positive from the breast biopsies. ( old slides from 2005 and 2012). In 2014 i started out on Taxotere Herceptin and perjetta. When that failed I had a bone biopsy that was HER2 negative and was treated that way until the liver mets appeared early this year. I had a biopsy and after many types of tests on it, came up HER2 positive, but barely. Thing is, I’m really equivocal and we are retrying the Herceptin route, now through Kadcyla.
I’ve been through many AI. There isn’t much I haven’t taken.
Thank you. I will read and share with my MO.
Right now I feel like Kadcyla is a Hail Mary try.
The weird thing is, I have very little pain right now. But MO is really worried about how quickly it could all go downhill now.
Hanging on!
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Kaption- ack - sending you a gentle hug. You deserve a break. Hoping K-train works for you. SP - Keep dancing my friend, I too may tune in less. Really sad to lose more lovely ladies as I'm still mourning Naturegirl2 who passed last July. I will PM as that is easier. I had my bloodwork yesterday and saw UCLA onc today. Bloodwork is normal, one liver number just a tad high, so good to restart Xeloda, plus BP is improving. I get to add calcium and have xgeva quarterly. My onc has my x @ 2500mg 7/7. She says she has lots of ladies with worse livers do well for years.:) So here I am with Madame x. I leave for London 5/29 for one week. Glad I have a getaway planned. Z - please keep us posted re: your head. A warning; any rads to the head take a long time to recover - it's like you need to sleep and nap all day. My dura met is gone, but that was a doozy to zap. And the bald patch is a slow grow to come back. On the bright side, I had fluids yesterday and most of the nurses congratulated me on my new LA job which starts at the end of summer. Hopefully I'll gain a pound or two to get moving. Cure-ious keep up the good work.
(()) C
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Kaption wishing you a good run on Kadcyla. Let us know.
Shetland, Lalalady it's a treacherous road here, but take your time and peak in when you can. Wish you much strength
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LaLady, So glad for the good news and what a wonderful oncologist to add her encouragment and experience in there, along with the list of things she needs to talk about!!!
Kaption- it seems these triple positives are really tricky and I can imagine when they are not even clearly triple positive!!! If this is to be a hail mary, can they add some Keytruda? Immunotherapy is a long shot, but what if it works?!!... Best of luck!!!
Shelton- I know what you mean, I am constantly deciding to take a break and then I come back the next day...
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kkrenz - going from every three weeks to every six weeks is a lot. Consider going to every 4 weeks? Every 5 weeks? Much less risky. You framed the question perfectly ... by lowering the dose, do you set yourself up for drug resistance? I dunno.
To be clear, the logic of fasting and the research and trials relate to chemos like taxane that interfere with cell division. Herceptin has a different mode of action.
Kaption - Hugs, total support, as you deal with this. Tough stuff. What are you switching from? Will you do Kadcyla alone or with something else?
Shetland - Understood. You are never far from our hearts. Thanks for letting us know that you are checking out because you are getting on with your life. I would worry otherwise.
It's hard to log in some days, so I don't. I don't make any big resolutions, just respect how I feel day by day. The loses really take the wind out of me. Always take a bit of time to process.
Lalady - you rock! Headed for SBRT to the lesion in some form in June. Mayo putting together orders this week. Scheduling starts next week. Thanks for the heads up on energy levels. Wasn't considering that.
Cure-ious - I am having my original biopsy re-tested for HER2 as it opens opens up new options for me. Waffling on whether staying on Abraxane a long time is a good idea or not ... if I could switch to Herceptin et al it would be great. But that raises all the questions discussed in the helpful article you link to ... thanks as always.
>Z<
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Like others I am very sad to hear of Missy’s passing. I always appreciated her presence on this board. Love and hugs to Bryan and all her family.0
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Z I would also find brain mets terrifying. I’m hoping you are able to find a place of calm and peacefulness through your yoga and other practices as you work through the steps you need to take to deal with these, and that you get the good results you deserve from your treatments.
Kaption sending love hugs and wishes for good results to you from Kadcyla.
Shetland I understand how you feel about a break. My treatment is also working for now with generally manageable side effects. I’m hoping it will stay that way at least until November when we plan a 3 week trip to Hawaii and even better would be at least through next spring when I have a couple of mini trips I want to take with my 32 year old daughter.
Lalady I am totally in awe of you taking on a new job while going through all that comes with MBC and treatment.0 -
Hello Ladies,
You are my heroes, you have done so much research. I think I know nothing. Here I am with liver mets after 3 cycles of Ibrance. I am terrified. The last week was a mess waiting for biopsy results. Inspiring to know that you women don't give up as I am very close to do.
Starting chemotherapy trying to hide my situation from my kids who are in preparation for very important exams for college. I have worked very hard for these kids. Too bad I won't be here to celebrate their life.
God bless you all
Lena
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Thank you all for the encouragement. I’m coming off a quick run with Gemzar. We added the Herceptin the past 2 months after getting the HER2 positive results. Kadcyla has Herceptin in it.
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Kaption, have been lurking, but wanted to let you know I’ve been following what’s going on. You are in my prayers. Praying the Kadcyla is the one that stops those mets in their tracks
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Kaption sorry to hear of your progression. Here’s hoping the Kadcyla works to keep the bc monster under control for a very long time
Babs
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Gracie, Babs and all- thank you for your prayers and good vibes. Needing them right now.
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Well darn, my CTs and MRIs last week show progression to bone and to the liver. Looks like the X has stopped working. Will vist with the MO on Monday to start a new game plan. Received my F1 report that shows only a few tumor mutations but, unfortunately, those mutations are all fighting for a piece of the action. I have not responded to hormonals,(high probability mutation related), to CDK4/6 inhibitors (high probability mutation related), and the very strong Madame X (high probability mutation related). Unfortunately I also have the PTEN mutation. That alone sends shivers down my spine. Technically speaking Afinitor is the only drug the report recommended. After doing some research on the PTEN mutation I found that PARP inhibitors may also work but I am ER/PR+, HER2- and currently PARP inhibitor trials are designed for those who are triple neg. so couldn't even try one in combination with Afinitor if I wanted to.
Ahhh, the weekend is upon us. Though I don't currently work, I still love the weekends. Family and friends around all day. Still plan movie night in front of the TV and dancing with arms wide open in the living room to Pandora.
Enjoy the rest of your day.
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So sorry to hear NO1-2NV. Best wishes on your next plan.
Yes, the weekend is special even when you don’t work. Enjoy!
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Hi. I'm new here and learning how to navigate the site. My husband mentioned that this thread has some active members who have liver mets, so I thought I would introduce myself and pick your brains
I was diagnosed with 2 liver mets in January of this year. I have two little ones and I am highly motivated to live as long as I can! Anyone with TNBC that went NED? What was your treatment plan after you went NED? How long did it work for? What would you do differently in hindsight?
As background... I had extremely ER+ stage 3 cancer (diagnosed Dec 2016) and went through ACT, mastectomy, radiation, and then was on faslodex/lupron/Ibrance. The 2 liver mets that showed up in January were triple negative. I started GemCarbo and after 6 rounds the mets can no longer be seen on PET. So, I am continuing on GemCarbo until my next PET. My doctor is considering taking me off GemCarbo if my scan is clear.
Curious what others have done for "maintenance" of triple negative NED.
Also, has anyone done radiation ablation or other local liver treatment for mets that went undetectable by PET?
Has anyone tried immunotherapy while NED?
I'm all ears to what other's have done or heard about.
Thanks in advance!
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Thrivingmom, welcome.
A few thoughts. TNBC is far more responsive to immunotherapy than ERPR+ MBC. Immunotherapy is far more effective when the tumor load is low. Established and/or aggressive tumors have a micro-environment that prevents the immune system from getting to the cancer. Early and often like voting in Chicago, is my strategy for immunotherapy. You never know when and where it will kick in, but the more you get the cancer in retreat with chemo etc, the more likely the response.
If you had a biopsy, you want to make sure they check for Tumor Infiltrating Lymphocytes ... these are a strong indicator that you would respond to immunotherapy. I don't have TNBC. It's almost a different disease as far as treatment strategies go, but you should see a specialist in immunotherapy and TNBC asap and have a plan for integrating available treatments into your plan at appropriate times. You will find leading researchers in this area at UCSF.
Hang out here with the liver mets gals, but you also need to be on the TNBC thread. Follow that link and introduce yourself. Your TNBC specific questions will be answered best in that forum.
I have two young girls too. If I see them graduate from HS, I will credit the Stage IV BCO brain trust. Amazing group. Stay with us.
>Z<
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Kaption and NO1, I'm so sorry about your progression. I hope your next TX is very effective and protects you for many years.
ShetlandPony, I totally understand your decision to enjoy family and life. I've been overwhelmed and greatly saddened by the recent losses as well. May you remain NED forever!
LaLady, enjoy your vacation....sounds amazing!
I'm finally feeling like myself again, I can think, aches and pains are gone, HBP and HBS all under control. My energy is good again. But just when life is getting back to normal, I have a pet scan schedon Monday and by Friday when I go over the results with my new MO I will know if I will have to start a new TX, or remain on tamoxifen
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https://www.medicalnewstoday.com/articles/321852.p...
Good News they're going after the metastasis now! There might be clinical trials soon to test Metarrestin. ( what a great name ah?) A compound which "significantly inhibited metastasis" in mice grafted with human pancreatic, breast, and prostate cancer. The treated mice also lived longer than untreated mice.
Metarrestin destroys a little-understood structure inside the nucleus of cancer cells that is known as the "perinucleolar compartment (PNC)."
Tests on laboratory-cultured cancer cells and cells sampled from human tumors have shown that "PNCs selectively form in cells from solid tumors."
Also, in previous work, Prof. Huang and her team had discovered that the likelihood of cancer spread was greater when tumor cells had more PNCs.
This led the team to wonder whether attacking PNCs might reduce cancer spread and improve patients' prospects.
In this study, the scientists used "high-throughput screening followed by chemical optimization" to assess which compound, from a list of at least 140,000, might have the greatest power to destroy PNCs in metastatic cancer cells.
They whittled down the list to 100 compounds, and then they identified one that destroyed PNCs in metastatic prostate cancer cells.
A modified version of the compound became metarrestin, which "significantly inhibited metastasis" in mice grafted with human pancreatic, breast, and prostate cancer. The treated mice also lived longer than untreated mice.
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I have just been getting caught up on the posts.
Letmywifelive and Bryan---I am so sorry for your loss. I am sitting at my computer reading your posts with tears running down my face. We continue to lose wonderful women to this cruel disease. Why can't there be a cure!!!! Bryan- I am also of the Christian faith and trust the Lord to guide me thru this and prepare a home for me where there will not be sickness or loss again.
Shetlandpony- Please pop in from time to time and let us know how you are doing. We care.
I thank God for this site and for you all.
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Zar! I can't keep up with your posts- are you SURE its a single solitary brain met?! Because I just don't think so (intuition?) a single brain met at still relatively early with ER-positive and not HER2-positive disease? Doesn't sound right. And then why do they say you are maybe HER2 positive? Apparently if you are both HER2 and ER positive, you should always take both an anti-HER2 PLUS an AI, because the anti-HER2 causes the estrogen receptor to become more active, and just an AI alone can push the HER2 to use that pathway, gotta block both of them, for triple positive. I'm going back to the abstracts to look for updates on oncolytic viruses, your post reminded me that they even exist..
Thriving: I second everything Zar told you- and duh yeah insist on immuno!! In combination with either other immuno or chemo or anything else. There are different kinds, you can try checkpoint inhibitors now and then anti-CD47 later. Also keep an eye out for updates from clinical trials for CDK7 or CDK12 inhbiitors, in development. PARP inhibitors are for BRCA mutant cancers, but if you are treated with a CDK12 inhibitor, then ANYONE will be able to go onto a PARP inhibitor at the same time, because CDK12 inhibitors cause a loss in BRCA expression and make any cancer sensitive to PARP inhibition, so the potential is we could all be able to benefit from drugs like Olaparib. Many clinical trials right now for triple-negative, choose wisely, get advice...
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zarovka - thank you for your quick response! and for your insights on immunotherapy. Thanks for pointing me to the TNBC thread too. I am just figuring out how to navigate the wealth of information and connections that are available through the site.
my little girls are 1 and 4. I hope that the BCO brain trust can help me see their graduations too
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Can't find nada interesting on oncolytics at ASCO.
However, the press is going gaga over a new anti-RET therapy. It will be among the ASCO highlighted abstracts, a drug called LOXO-292, in phase 1 trials for solid tumors with RET tyrosine kinase mutation, translocation or amplification. Big results in lung (65% response) and thyroid cancers (84% response), not sure if any breast cancer patients were in that trial, apparently not.
From a review about RET: Recent studies demonstrate that the (receptor tyrosine kinase) RET is overexpressed in a subset of ER-positive breast cancers and that crosstalk between RET and ER is important in responses to endocrine therapy. The development of small molecular inhibitors that target RET allows the opportunity to consider combination therapies as a strategy to improve response to treatment and to prevent and combat endocrine resistance.
The data suggest that upregulation of RET is one way ER-positive cells can become resistant to AIs, and that inhibition of RET could restore estrogen dependence on the cancer. However, I am not seeing how common or rare is RET upregulation? Apparently the drug is highly effective, specific, tolerated and works on brain mets (but these are early days..). I guess, for those of you who have had your tumors analyzed genetically check if there's anything about RET, might keep an eye on this drug...
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Also from ASCO: a new potential best-in-class CDK4/6 inhibitor is being tested, called G1T38, with fulvestrant/Faslodex, continuous dosing
As well as a short-term IV CDK4/6 inhibitor designed for use with chemo, called Trilaciclib, which is meant to reduce myelosuppression (so you don't lose blood cells) and enhance immune system function during chemotherapy- one clinical trial is for TNBC.
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Cure-ious -
I have a single 2cm lesion in my brain that kinda looks like meningioma (benign) but has certain characteristics of metastatic lesions (edema and a little horn structure). Spine MRI and a clean spinal tap show no evidence of leptomeningeal disease, but that doesn't rule out cancer. The lesion cannot be biopsied because it is too deep.
Based on the generally positive news, I declined immediate treatment of the lesion last week which allows us to get one more diagnostic ... a brain MRI 6-8 weeks after the original brain MRI. Most benign lesions will not grow in that short a period. If we see growth then are we dealing with cancer, if not, then malignancy is much less likely. On the one hand, it's risky to wait and see, on the other hand if I had gone ahead and zapped it, we would miss an important data point. I was fried and needed to come home, so that tipped the balance in favor of waiting a month to radiate the bad boy.
If I have a brain met then I need to change treatments to something that crosses the blood brain barrier. That makes the information that we get from the 6 week MRI valuable. Either way, I am getting the thing zapped mid June. Mayo doctor drawing up orders. I have no need for a lesion in my brain, benign or otherwise.
Regarding HER2 ... my new onc observed that 1) research shows that HER2 status under-diagnosed and 2) my original biopsy 2 years ago was HER2 +1. +1 is technically negative, but the test they used in the original study is not definitive. HER2 status gives you access to some effective drugs with low side effects. MO wants Mayo to re-assess the original pathology with more accurate tests.
My tissue is currently at Mayo being re-evaluated. I haven't heard from then in 2 weeks. I suspect I will find there are problems with the tissue and it cannot be evaluated .. but still waiting on that.
They measured the HER2 protein in my serum while I was treated in Japan and found that it was 2.5X the upper limit of normal (ULN). In Japan, I am HER2+ and I received Herceptin/Perjeta as part of my treatment there. They recommended that I continue Herceptin/Perjeta. However, none of my biopsies are positive for HER2, in the US we don't evaluate HER2 status based on serum levels of HER2 protein and, therefore, insurance here won't pay for Herceptin in my case.
The plan is to see if Mayo can establish HER2 status from the original tissue sample using more accurate testing. If they do, I will likely switch to H/P after a few cycles of Abraxane has (hopefully) controlled the aggressive cancer in my liver. If Mayo determines I am negative (or just can't do anything with my sample), do I panic because I don't have a great standard of care option to move to after Abraxane. (Herceptin/Perjeta would be ideal for a long list of reasons) No I do not!
If the original biopsy is HER2-, then am eligible for a fabulotastic trial at MSKCC that JFL brought to our attention. In this trial they infuse radioactive Herceptin and/or Perjeta, just like a normal PET scan except that sugar is swapped outfor drugs. Herceptin and Perjeta bind to HER2 receptors and concentrate on HER2 positive tumors. Then they do a PET scan to see the HER2+ tumors. Given my serum levels of HER2, it is likely that I have HER2+ tumors, they just did not hit one of them with any of my biopsies. Instead of randomly choosing a tumor, we will biopsy the brightest star in the constellation and ... voila!! I have the proof that the insurance company needs to pay for Herceptin/Perjeta. Thank you JFL. I can't recall if you went for that trial or not, but very interested in anything you learn either way.
So that is the long story.
Ladies, be aware that HER2 status is likely under-diagnosed and the treatments available for HER2+ MBC, when they work, work for a long time and are relatively easy. Herceptin is synergetic with immunotherapies and therefore of great relevance to my strategies.
First IV of series 2 of Abraxane last Monday. Moved to an every 9 day schedule rather than every 7 to better accommodate fasting around IVs. Still a rough schedule, but my second fast of this series will be a fasting mimicking diet rather than a water fast. Enjoying piles of complex carbs, healthy oils and the occasional bite of fish at the moment. Party ends Sunday and I eat out of little white packets for 5 days around the next IV.
Home getting my kids through the end of the school year and in good spirits after some rough weeks. Various diagnostics corroborating a response to Abraxane, so that helps mentally.
Cure-ious - interesting stuff from ASCO ... will dig in over the weekend. I will get back to my notes on oncolytics and start a thread at some point. I've been overwhelmed with the brain lesion, starting chemo and (being honest here) losing my hair. Such a relief to give up trying to keep it. Huge amount of work. In hindsight, not sure of the point.
There are several small but promising trials of oncolytic viruses. The astonishing rate at which they fill up ;-) is a good sign. For the moment, however, the possibility of HER2+ status and Herceptin has taken priority over studying the oncolytic virus treatments.
>Z<
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Cure-ious - thanks for all the info on different types of immunotherapy and the PARP + CDK12 inhibitor research!
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Z, I am hoping the brain lesion is "sloth"-like - lazy, extremely slow metabolism, slow movement, inactive and spending most of its time sleeping so that you will see no growth on the next MRI! Have you been able to keep your weight up on the fasting? That must be a challenge given your fasting days to non-fasting days ratio and perhaps why, in part, you are transitioning to the fast mimicking diet?
As far the HER2+ herceptin PET retesting trial - I spoke to the doctor running the trial at MSKCC. I met all of the criteria except for one requirement - my original, early stage breast biopsy sample with enough tissue for retesting. They retest both the original breast tumor biopsy and the Stage 4 biopsy. I had original breast biopsy done over 11.5 years ago and my cancer center confirmed a few days ago that they destroy all samples after 10 years. They drop the ball on a lot of things so I was hoping they dropped the ball on this and didn't get around to destroying it. However, no such luck. Very frustrating. Lesson for those of you with "aging" biopsies. Try to get them before your center destroys them as one never knows when one will need them. I have no doubt there would be a lot of tissue available from my original biopsy had it not been destroyed. I had a needle core biopsy on 2 tumors to diagnose me and then had lots of additional biopsy samples from my mastectomy two weeks later. My right breast was home to at least 6 cancerous tumors and over half of the breast consisted of DCIS when I was diagnosed. I need to find someone else doing this type of HER2+ herceptin PET test that does not require the original breast biopsy!
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JFL - frustrating! But thanks for the warning (too late for me!)
Zar- Will keep an eye on ASCO HER2 stories. If you are HER2-positive, its such good news!!
To all- One change to the ASCO report of a great RET drug out there-
AI-resistant ER-positive HER2-negative breast cancer can develop due to up-regulation of RET kinase activity, and that population could potentially benefit from this new powerful drug. But what to look for? Apparently it is not high levels of RET or RET mutations, but rather look for an increase in the expression of the RET ligand- basically any one of these proteins:
GDNF, ARTN, or NRTN
If you have progression on AIs, and either of these three genes is highly expressed by genomics analysis of the biopsy (no idea if companies test for them), then in principle you might respond to the new RET drug LOXO-292
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Curious, I will be keeping an eye on LOXO-292. I haven't heard of the concept of RET but have heard about the trial drug LOXO. Would be nice to know which tests include testing for these expressions (if any of them do). Any other new, notable items coming out of ASCO?
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