How are people with liver mets doing?
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@rk2020 , I'm checking in to see how you are doing and if you had the Y90 procedure at the end of 2023. I've been thinking about you and hope you had a wonderful Christmas with your son and his gf :)
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@vlnrph I’m sorry to hear of your lung involvement but Enhertu has been known to achieve some pretty amazing results - a real game changer for many.
I had my first infusion in June 2023 and whoa, that first infusion was a doozy. I had a plethora of side effects - basically everything except nausea. I bumped down to 80% which was better but still left me with little QOL so I went down to 60%, which was still difficult but tolerable. The wide range of reactions to this drug amazes me. Some can continue to work and others take it on the chin. The good news is that I saw improvement immediately after just 1 infusion but I couldn’t continue at that dose. My bone mets, which are extensive, remained stable the entire time on Enhertu and all but one liver lesion responded. Unfortunately, one liver met seemed completely unphased by Enhertu and grew by leaps and bounds. I had my last infusion in early Dec and am now undergoing Y90 on my liver in the hopes that I can kick the can down the road a bit. These drugs are so rough on my body. I’m awaiting genomic testing results from a liver biopsy before I decide on my next line. My MO wants to try Trodelvy but I feel so beat up by treatment that I don’t know if I can do it. That’s when we started discussing Y90 and a chemo holiday. Based on my last genomic result, Lynparza may be an option (PALB1 mutation) or Everolimus & Exemestane (FGFR1 mutation). In the meantime, while I recover from Y90 and am off chemo, a couple of my bone mets are increasingly painful. Good luck on Enhertu. I’m hoping you see amazing results!0 -
@aprilgirl1 You are so sweet to check on me. The Y90 procedure itself was easy but unfortunately the side effects put a bit of a damper on the holiday. Fortunately, I was feeling well enough to enjoy a nice Christmas Eve dinner at a swanky restaurant but just a few hours out of the house left me totally wiped out. On my worst day, my husband took them to a museum and out for dinner. I was grateful to have a day to just heal without having to push myself. We spent more time than usual watching movies and doing a jigsaw puzzle so we were able to make the best of it. Here’s a funny about how 3 adults are WAY too dependent on mom. One afternoon/night I stayed in bed and told them they were on their own for dinner. Do you know what 3 adults came up with for dinner? Totino’s pizza puffs. Oh good grief. I bought them as a junk food treat but they weren’t meant for a meal. Mom was mortified but nobody else seemed to care.
As far as Y90 goes, I had some liver pain which I took as a good sign that the tumors were dying off, extreme fatigue, flu like body aches and arm pain. Before undergoing my next Y90, I will talk with the doctor but I think he hit a nerve in my arm because I experienced some pretty bad pain in 3 separate areas of my arm. And of course, this started after the office was closed for a long holiday weekend and somehow I was not given discharge instructions. I was too loopy at the time to notice. When the pain started, I had no idea what pain relievers I was allowed to take. 🤦♀️ My next procedure should be easier as the tumors are smaller. I sure hope so because my brother’s Celebration Of Life is just a few days later and I don’t want to miss it.3 -
I'm on Orserdu bottle #5. In the trials, Orserdu was effective in only about 45% of participants. I've started to have new left upper quadrant pain. I assume the tail of the liver. I've never had this pain before. Started out sharp "knife like", intermittent, and now dull and continuous. I suspect it's not a good sign. My scans after bottle #3 were mixed - some lesions stable, some liver lesions slightly smaller and more attenuated, two of many bone lesions with progression, but my oncologist didn't think the progression was significant. My next scans not due until Feb 8. I'm in AZ and scheduled to fly back home to WI Feb 5. My local oncologist wanted me to go to AZ, but she is unable to do any long distance consults. She has told me she doesn't want to hear about pain until it's continued at least a week. Although the warmer weather has been nice, I wish I was back home.
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Hey wen, be happy you’re not in WI right now! We had an unbelievable amount of snow this week. Our driveway plow service came at least 4 times. Venturing out twice for provisions, our main coping mechanism was to just hibernate. Unfortunately, there were also 3 power outages of 2-3 hours each. The next few days will see zero or below for our high…
I had a curious low grade 99.4 temperature last evening. Felt somewhat “off” so had to find the thermometer. Not dramatic enough to be neutropenic and, having normalized this morning, I’m looking into the concept of neoplastic fever. Also, both ENHERTU cycles thus far have involved a number of night sweats. I take gabapentin but still have interrupted sleep.
I’m experiencing fatigue from ongoing anemia, despite the recent dose reduction. Not getting much done. Content to sit & view the Winter Wonderland outdoors, including seeing a gorgeous red cardinal against a bright white background as we ate breakfast. Hubby took an iphone photo. At least the bathrooms got cleaned during my steroid rush…
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Hi vlnrph,
I've seen some pictures of the snow WI got….very pretty….but my husband is glad to be missing it all. The power outages are concerning. I'll be interested in hearing how it goes for you on ENHERTU and hope the symptoms you're now experiencing stabilize. ENHERTU will probably be my next treatment, whenever that is.
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@weninwi I hope your pain doesn’t mean liver progression. Please post an update when you get your scan results. I was basically asymptomatic for almost 2 years before I started feeling liver pain. I count myself lucky. Now that I’ve treated my liver with Y90 I’ve got sporadic pain but I was told that’s all part of the dying off process. 🤞🏻
@vlnrph I find it curious that you are getting night sweats on Enhertu I got them for a short period when I took Tamoxifen as adjuvant therapy. Then they started up again on Enhertu which I thought odd since it isn’t a hormone blocker. My last infusion was 12/5 so it probably wore off towards the end of December and yet the sweats didn’t start dwindling until about 2 weeks ago. I still get them but I’m not dripping wet to the point where my bedding is soaked. Like I really needed the extra task of stripping and washing my bedding more often. My husband is a MacGyver and can do just about anything - except make a bed, fold laundry or cook. Sigh
I got my biopsy test results and it seems that my liver has become a master at mutation so I’m hoping that Y90 can knock them out completely. In 2020 my bone biopsy indicated ER 95% PR 90% HER2 low. Then last June a liver biopsy of left lobe tumor was ER 50% PR 0% HER2+. In December I had a biopsy of a rapidly growing tumor group in my right lobe- ER 1% PR 0% HER2 low. The genomic test results had some mutations common in both liver tumors but not the ones I wanted. Sigh. In June the biopsy picked up PALB2 which qualifies me for Lynparza but the December test said PALB2 negative. My June biopsy also indicted an FGFR1 mutation which has been shown to have longer PFS when treated with Aromasin/Affinitor then tumors without the FGFR1 mutation. But Decembers sample didn’t pick it up. My MO believes Trodelvy is my best option for OS but knowing how I am feeling both physically and emotionally these days, she feels A/A is worth a try. Honestly, I’m not looking for the holy grail of NEAD. I just want to be able to spend some time with my son this spring. I’m hoping that Y90 does its thing and effectively treats my liver as my bones have been much easier to keep stable.
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Thanks to rk2020 for her comment on the night sweats & description of those unexpected liver mutations. I also have stable bone mets and do hope the Y90 zaps those target tumor(s) into oblivion. I’m sorry that your brother died recently but trust the memorial service truly celebrated his life. Wen, maybe we can meet up again once you’re back in WI?
As for me, a repeat chest CT last week is more concerning for pneumonitis than further metastases however I have to go off ENHERTU after only 2 doses. I was thinking a nice long run would have been nice. While treating my lungs with oral steroids for at least the next 2 months (including a taper from 60mg prednisone every morning), I’ll be on capecitabine.
Xeloda side effects seem to be difficult for some but knowing that topical Voltaren/diclofenac can prevent the nasty hand & foot syndrome is good. Should unbearable mouth sores occur, my oncologist would probably agree to alter the plan - we start with 2 weeks on, 1 off. More imaging and labs are scheduled to assess how things develop so stay tuned!
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Yes, I am on the tail end of recovery from pneumonitis. My CT 2 weeks ago still showed ground glass opacities in my lungs so they will do a repeat chest X-ray in 4 weeks and scan in 8 weeks to compare. I am seeing a pulmonologist as well. I started Afinitor in September and my symptoms started about 6 weeks later. It initially started as a cough and got progressively worse after a couple weeks. I started to notice shortness of breath but thought I was just worn out. I began to realize something was off and went to urgent care for cough medicine in Dec. where they sent me to the ER for at CT which showed ground glass opacities. They said it could be atypical pneumonia but all of my respiratory panels came back negative for Covid, pneumonia, rsv, etc. My trial oncologist took me off Afinitor immediately because she knew it was pneumonitis not pneumonia which I am grateful for. It actually got worse before it got better and I wound up in the hospital on oxygen and steroids 2 weeks later. The steroids really helped clear my lungs. It took a couple trips to the ER to get approved for home O2 and by then my levels were in the 80’s. I would recommend steroids sooner rather than later and I should’ve advocated for that and the 02 sooner. I am doing much better and the steroids and oxygen really helped. I feel it’s about 90% resolved, just continuing to work on getting my energy and strength back. I am off oxygen completely and steroids and I have been working a little and getting out some. Hope this helps.
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@mommacj I hope your pneumonitis saga is completely in your rear view mirror soon. While I wish you never had to have this experience, I’m glad you shared these details. I’ve had a nagging dry cough for…maybe 2 months or more? Ive had much worse coughs over the years from respiratory infections. This is more like a nagging need to clear my throat and occasionally catch my breath. It’s at its worst in the evenings or if I’m out with friends (presumably because I’m projecting my voice more). I’ve had so many other worse things going on that I’ve never even mentioned this to my doctor. Enhertu can cause ILD but my last treatment was 12/5 and it’s actually gotten slightly worse since then. I really don’t think it’s pneumonitis either but since it’s been going on for so long, it might be something. But what? I will be starting Afinitor later this week. 😬 I’m scheduled for a routine CT on Monday so maybe a clue will show up there. In the meantime, I’ll keep putting one foot in front of the other and hope for the best.
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rk2020,
I see you are off Enhertu and now on Aromasin and Afinitor. Was this treatment change due to progression on Enhertu? I've been on Orserdu (elacestrant) for the past 6 months (an easy drug), but my scans earlier this week showed progression in the liver (bones are stable). I see my MO this coming week and assume she will recommend transitioning to Enhertu. I'm very nervous about all the potential side effects - ILD, anemia, fatigue, etc. I noticed in other of your postings re Enhertu that you dropped to 80% dose and then 60% dose. How soon/quickly were these dose reductions made and based on what symptoms? I've decided to join the facebook group for this drug to gather more information. Any words of guidance re Enhertu based on your experience? Thank you.
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@weninwi While some patients on Enhertu continue to work, I was at the opposite end of the spectrum. Enhertu has the potential for amazing and fast results so don’t be scared off by my story. My story doesn’t have to be your story.
Nausea seems to be a very common side effect but that’s one SE I didn’t have. Maybe it was my pre meds. I had 1 dose at 100%. Symptoms started late on day 3. I thought I was turning the corner on day 7. I even went with my husband to have a morning bagel. That only lasted until about 10 am and then I was worse then ever and down for the count until 3 days before my next infusion. I was weak, shaky, drenching night sweats, soul sucking fatigue, my entire mouth burned, my feet burned, my already inflamed colon was burning more then ever, heartburn, constant burping, dry cough, constipated, no appetite and no other drug dehydrated me this much. On day 8 & 9 I ran a low grade fever and had flu like body aches. Honestly I’ve never been this sick before. The good part was that a sore on my hand which I’ve had for about a year immediately started to heal. I always wondered if it was a skin met but it never spread so I never even showed it to my MO. It always seemed like I had bigger problems to discuss then a little sore. My blood draw before infusion 2 at 80% showed a bump up in my ca27.29 and ca15-3. This was from tumor die off. 80% dose was better but still not the quality of life I desired. I don’t want to exist on my couch. I want to be out living as much as possible. I expect side effects but this was next level. And Enhertu had made me depressed. I was an emotional wreck. Even my husband thought 80% dose was unsustainable. So we reduced to 60% for infusion 3. The very good news is that my tumor markers were dropping like a rock. But eventually I noticed my hand sore coming back. Hmmm. Scans showed that my bones and tumors in my left liver lobe were stable but tumors popped up in my right lobe and were growing very fast. That’s when we did another biopsy and Y90. So my first Enhertu dose was 6/15 and my last was 12/5.
As a side note, I started losing my hair 18 days after infusion 1 and had to shave it off by day 23. At some point during my 60% dose it started growing back VERY slowly. By Christmas it was growing fast. It took until the end of January before my drenching night sweats ended. I have to say that the last thing I needed when I was so weak was to have to change my sheets every 1-2 days. 🤦♀️
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rk2020,
Oh boy…..thanks for sharing. You've certainly been through the wringer. Are you starting to feel better on your new regimen?
I've been reading on the Enhertu facebook group about all the possible side effects. Women who have been on multiple types of chemo say it's the worst drug they've been on. I've already decided to ask to start at 80% dose. Some commenters have said the infusion rate should be slow - like over 60-90 minutes. Was this done for you? The pre infusion and post infusion drugs seem to be various - for example some get IV steroids and some oral steroids, etc. I had hair thinning with Verzenio but have never lost it completely, so not looking forward to that. Not sure about using a cold cap? The risk for ILD interstitial lung disease is concerning. I understand it can be asymptomatic at first. I already purchased electrolyte replacement packets to add to water. I've read about Y90, but this has never been brought up as possibility for me.
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@weninwi The first Enhertu infusion is over 90 minutes. Thereafter, the manufacturer recommends 30 minutes. There is no data I could find that a slower rate helps BUT what could it hurt? My anecdotal experience is that I was getting the standard 30 minutes until my husband and I took a trip to Wisconsin to visit our son. I set it up to get my infusion at my previous MO in WI. When I got there, the nurse told me that since this is my first infusion at their facility, the time is set to 90 minutes and she can’t override it. Did I get side effects? Yes, but it was probably my easiest cycle. Coincidence? So when I got back to Naples FL I asked to slow the drip rate. Unfortunately it is high season here so the infusion centers are slammed with patients and I was the last patient scheduled to finish. They extended the time from 30 to 40 minutes. An extra 10 minutes wasn’t enough to make a difference.
Losing my hair…I lost my hair in 2016 during early stage treatment. I didn’t look that bad bald, my head is too small for hats and I didn’t like my very expensive wig so I swore that if I lost my hair again, I would rock a bald head. Then Enhertu took it from me. I shaved my head and was shocked. My head had become lumpy from skull mets. I had a permanent red mark presumably from cervical radiation that had been covered by hair. And because I had a Florida tan, the contrast from fish belly white scalp to tan face and neck was too much. I hated being bald. So much for confidently rocking a bald head. Sigh. I was so glad when I got a “5:00 shadow” on my head. In general, cold capping isn’t for me because I have skull mets and don’t want brain mets so I feel I don’t want to impede chemo going to my head region even a little bit. If you read on the Facebook page, cold capping hasn’t worked for others and is very expensive. I think it has something to do with a delayed release of Enhertu into your system. And not everyone loses their hair. Some just thin and then it grows back.
My pre meds included 10 mg dexamethasone, 250mcg palonosetron (for nausea) and 130 mg cinvanti (for nausea). Those drugs worked for me and I had no nausea/vomiting.0 -
@weninwi Two more comments…
Hydration - I had a problem drinking water on Enhertu so Liquid IV was a big help. I diluted it more than directions. I just needed enough flavor to help me get the fluid down. I tried a couple of cycles with extra IV hydration but honestly, I don’t feel it helped me and it made me VERY bloated.
Y90 - I was the one to bring it up to my breast cancer oncologist. I have 2 MO’s. One local to me who is a generalist (she is NOT a big help beyond standard protocol) and one near Miami who specializes in breast cancer. Anyway, because my liver seemed to be a lot harder to control than my bones, I asked her if some type of liver directed therapy was an option. Although I had a biopsy on my left lobe in June, she suggested another biopsy on my right lobe since my right lobe was misbehaving big time. And I could discuss with the same interventional radiologist if I was a candidate for some type of liver therapy. I know it’s not curative but I was just hoping to kick the can down the road a bit and I was so beat up from Enhertu (mentally and physically) that we thought a little drug free time might help me decide if I wanted to start Trodelvy or something else. After the Caris results came back, as you know, I chose A/A. I might try Trodelvy next but honestly, I’m seriously considering just going on palliative care. I’m tired of this circus.
As a side note, I’ve had 3 biopsies. A bone biopsy in 2020, a liver biopsy in June 23 as well as December 23. All 3 came back with different pathology results as well as genomic results. This cancer can be a tricky son of a gun.1 -
Hi, I'm sorry for your liver recurrence.
I hope you find something that work, I read Trodelvy is very effective on somebody, and some people don't fell too bad with it...
I was wondering if they may consider surgery on your right liver lobe...is that an option? Sometimes reducing the mass of cancer make more effective the medicines as well. It was a study of this very good italian oncologist specialized in liver metastasis surgery.
I hope you will find something. I'm also soo scared of all my recurrence, I always think if may we hold on, something will may pop up, may be even some months will do a difference in to finding a new thereapy...
I know is a dream, but you never know, medicines go on fast nowdays.
Whatever you decide I wish you all the best. Sometimes I just get so sad...I whis we wern't in this sh**t...
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Looks like I've asked this before but deleted after a helpful comment gave me good info. But still interested in the consensus. Thanks so much.
Hello everyone,
Brief history then a question: diagnosed IV 9/19, lymph nodes and bone. In August 2023, it moved to my liver (liver, lymph nodes, bone gone). We have done 3 Guardant liquid biopsies, and a lymph node biopsy when first diagnosed, but my oncologist won't do a liver biopsy. I've asked twice, she says it's not worth the risk involved, and the liquid biopsies tell us what we need to know. I disagree - my feeling is no stone left unturned and a biopsy is a big boulder.
But maybe I'm missing something - are the liquid biopsies good enough? I have the FGFR1 amplification, and the erbb2 (E645fs (Exon 16 deletion), CDK6 D233E. The erbb2 and cdk6 say on the report "uncertain clinical significance" so she's blowing them off. And there are no FGFR1 clinical trials available (I've already done exemestene/everolimus). I see so many stories about the cancer mutating to HER2+ or triple negative or the biopsy finding different mutations, it feels like it should be done.
I like her - she's aggressive in many ways which I appreciate, but the liver biopsy thing bothers me. My next line of treatment once Trodelvy stops working (which I anticipate will be very soon) is a clinical trial assuming my liver doesn't get out of control, then we'd do a different chemo. I'm guessing the trial will do a liver biopsy, at least I hope so.Anyway, I probably need a new oncologist which I dread doing. I have access to MD Anderson Houston, but I'd need a local place to do treatments, too. I also have access to UT Southwestern in town (DFW area).
Sorry for the rambling post, but my head is spinning with questions. Any and all opinions welcome! Thank you in advance for your time and comments. I've learned so much from all of you in the short time I've been here. :)
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@cblaurenceauthor Joining a trial does not guarantee a liver biopsy and if your trial does ask for one, it might be used for pharmacokinetics only and not for the testing you desire. I was in 2 trials. The first asked for 2 biopsies but the material was donated to the trial research and I was told up front that I would not see any results. I could also refuse to do the biopsy and still stay in the trial. My second trial did not require any biopsy.
Since then I’ve had 2 more liver biopsies - this time for my benefit. Last June they biopsied a tumor in my left liver lobe and I received Foundation One results. The pathology report told me that my ER, PR and HER2 status had changed since my bone biopsy in 2020. This is information that a Guardant liquid does not provide. I found the Foundation One report informative and easy to read by a layman. Then when rapidly growing tumors developed in my right lobe, I had another biopsy. This time the report came from Caris. It did check my AR (androgen) status which I don’t remember seeing on the Foundation One report. Additionally, the ER and HER2 status were different from the June biopsy. And while there were mutations in common between the reports, there were differences there as well. While a liquid biopsy is easy and can provide enough data to direct some treatment options, I found the results from my biopsies to be much more complete.0 -
@rk2020 Ugh. I’m going to have to switch oncologists. It’s too bad but from everything you just said, I can’t afford not to. If I have one more line of chemo I will reduce my trial chances, and I can’t risk that there’s been a cancer change that would open up a targeted treatment.
Thank you so much for your answer. Better start planning my MD Anderson trip. :)
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rk2020, thanks - well that are some very interesting things you pointed out about biopsies. Your examples also show that if fast progression happens, something is really "off", and biopsy finds it out (ER/HER changes compared to June report). Well, probably most effective test to date to quickly see why and what is happening. And biopsy techniques are also improving - that is important to know. I also hope that sooner or later they'll develop easier bone biopsy methods. Thanks again for your input - that was very eye-opening and helpful. Saulius
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Liver mets seem to be staying quiet. My primary concern the past couple months has been pneumonitis. A chest CT last week showed major improvement, for which I am thankful. Prednisone for that condition is down to 30mg daily. I now have a pronounced “moonface” and developed a nasty case of oral thrush. Nystatin is helping clear up the latter.
Meanwhile, I completed cycle 1 of capecitabine at 3g daily and will resume this evening at a lower dose. I’m doing the 14/7 schedule. Frequent sweats in bed continue to plague me with interrupted sleep. We’re not sure why those are occurring but the night I began the steroid, they hit with full force, having dwindled to just one or two light events earlier that month.
I’m also awaiting Guardant results. Tumor marker 15-3 is stable in the 50s where it was during my 3 “good” years on Verzenio. Started jumping up by 10 points until hepatic involvement was seen on a PET scan. Monitoring is different at my new oncology clinic, probably due to expense and/or availability of machine time. I had a 2nd opinion & switched…
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Thanks for the update @vlnrph. Glad you went for the Guardant, and we look forward to hearing what they say.
Sending everyone lots of love and strength!
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@vlnrph I had 4 liver mets, two disappeared and two grew. I have been hovering in the 30's then CA 15-3 number jumped 12 points last month then 6 points this month and I am at 50 for tumor marker. Right now I am on Ibrance and Faslodex. Possibly a change to meds and I will be having a blood draw for Guardant done next month along with another scan.
I see that you were on Piqray which is one of the meds that I may be changed too. Was this due to mutation discovered earlier? Or is this Guardant test your first one? I wonder how often does the doctor order these tests, do you have them each year or when there is a change?
Glad you got a second opinion and switched. When we lose confidence in our provider its time for a new one!
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Hi, I’m new to this thread, and I haven’t posted to other threads in a long time. (Life took precedence over cancer for a while.). Now a recent PET/CT found a potential issue in my liver. I had an MRI yesterday and it showed an “indeterminate” focus of signal intensity measuring about 6mm in the same area that was on the PET/CT. The report suggested a follow up MRI to watch for change in size/appearance. (Doesn’t seem like a big deal if they just want to watch it.)
Since my Mom had a liver lesion that ended up being nothing, I am trying not to be concerned. The lesion that I had on my spine has been stable for the last 5 years, and I don’t have other worrisome issues beyond fatigue and normal treatment side effects. My last blood test was good.
Wondering whether others have had a similar experience or whether this is the beginning of the next phase where I have to take chemo again. (I’m only taking Arimidex now.)
Does anyone have advice to share?
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Thanks for the reassurance on the path forward, rk2020. I hope your current treatment path is managing those tumors. My uncle had multiple liver tumors from stage IV melanoma. I know each kind of cancer is different, and each person’s cancer is different, but he was helped by a clinical trial and the tumors have been gone for 10 years now. I always take comfort that medicine continues to progress.
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I had to share my updated liver mets story.
My original scans in September 2023 reflected "multiple (20+) tiny liver lesions".
I've been on Verzenio since the beginning of December and it appears I've had 100% resolution in my liver. I was quite surprised to read that! I have been experiencing a feeling of swollen liver and more recently, actuay pain in my liver that resolves in a few hours. The oncologist suggested it was from the liver healing. I didn't believe her since I thought she was just trying to make me feel better. I guess I should have believed her.
ON a side note, everything has resolved except for a small spot on my pelvis that is smaller than my previous scan. I am really surprised but very, very happy, as you can imagine. I just wish the Verzenio didn't have any side effects but I guess I can deal with those.
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