How are people with liver mets doing?
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Zills, hope it goes well for you! Weekly should be easier as it is a smaller dose. (I unfortunately can't get weekly here for some stupid admin reason). Nice thing about it is it's so fast without all the premeds. It looks weird in the bag btw - it's kind of milky white. Just so you aren't surprised by it...
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Zills, I am glad you have the option of abraxane. I have decided that whenever my onc says it’s time for a taxane again, I am going to tell her I have paid my dues with those steroids (crying jags) and Benadryl (whole day lost to sleeping), and I want abraxane. Since I had adrenal insufficiency earlier this year, that may give her a reason to keep me off the steroids, too.
My trial is for cancer that is Her2 negative and shows a mutation in Her2. (This is different from Her2 amplified aka Her2 positive.) This mutation showed up on Foundation One tumor testing and Guardant liquid biopsy. It is uncommon, but more often seen in advanced ILC. Apparently it was driving the cancer, because I had a swift and apparently NEAD response. The hardest part is managing the diarrhea caused by neratinib. I am on 2/3 the “standard” insane dose. Herceptin is fine. Faslodex, I hate the shots but I believe it is important to block the ER pathway so the cancer cannot revert to it. I am happy to answer questions here or via PM.
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My chemo start date got canceled again. This time because of SE of Eribulin. It can cause heart problems. I’m already experiencing some symptoms that may be A fib. So, the onc pharmacist said I should not start on Eribulin until my halter monitor report gets back to my MO.
Has anyone else experienced this on Eribulin? Other than this problem I was happy to hear it only takes 10 minutes to infuse. Plus, it requires no pre meds. I know it causes constipation so I’ll try to stay ahead of that with other meds at home.
Actually, I’m not too upset about this delay. I was supposed to start next Tuesday. I was feeling terribly anxious. Now, I don’t feel as much. I can get my Christmas stuff put away, etc. Besides that, it also feels like a First things First to me. If I do have A fib I would want to get that fixed before I start this drug.
Happy New Year Here’s to a better year than 2020.
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I've had nausea, exhaustion and hiccups for several months. My 3 weekly bloods yesterday had very elevated ALT 251, AST 82, GGT 620 and Alk Phosphatase 302. My Herceptin / Perjeta treatment today was canceled and I had urgent CT Brain, Chest, Abdo and Pelvis, and Abdominal Ultrasound. They were all clear!
I see my Oncologist Thursday but has anyone else had this situation where all 4 liver enzymes were very elevated yet nothing seen on scans? What was the outcome? Did liver Mets show up later or did your enzymes just return to normal? Was another reason found for your raised enzymes? Thank you for any insight.
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BellaTassie15, I am not so sure why you are having these symptoms. What other treatments are you getting now - are you on Taxol along with Herceptin/Parjeta? Taxol can cause exhaustion. It is good that your scans were clear but ofcourse doesn't give you any answers about your symptoms.
Could you ask your MO if elevated liver enzymes may be caused by the treatment you are on? Here is an article of a rare case of liver toxicity in a patient while on treatment:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC36839...
Your oncologist will be the best person to answer your questions. Please keep us posted about what your MO says. It is very educational for all of us to learn from each other's experience, since everyone is different.
Hope you are able to minimize your nausea with anti-nausea medications.
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Moth - Sorry that you can't get weekly Abraxane. I was on weekly with very mild side effects. Any chance that you can push for weekly abraxane after experiencing difficult side effects on the every 3 week schedule? You've probably already considered this... With COVID19 raging, a silver lining is less trips to the infusion center...
Zills - I hope that weekly Abraxane is very effective! Again, my side effects were very mild. I didn't even take anti-nausea meds. The main side effect was hair loss, but I used ice caps and still kept full coverage. I had a tiny bit of neuropathy start in my left hand, so I also iced my hands/feet.
ShetlandPony - I'm so glad that the SUMMIT trial has been effective for you!! I believe there was an arm on the original DESTINY01 trial for HER2 mutations. I wonder if Enhertu could be a potential future treatment for you. I'm on DESTINY04 for HER2-low.
Grannax - Beautiful family photo! I'm glad that you are feeling better after the microwave ablations. Best wishes for excellent results on eribulin! It will be my next chemo. I've read that it is relatively well-tolerated. I did have one friend who experienced significant neuropathy on eribulin, so I plan to ice my hands and feet. I was watching the FORTRESS trial which combines balixafortide with eribulin, but I just looked it up and it does not appear to be recruiting any more.
BellaTassie15 - I would tend to believe the CT and ultrasound scans. My liver enzymes have always been normal even with confirmed liver mets of a decent size (one was almost 3cm before microwave ablation). So, I'd tend to suspect that your treatment could be causing your elevated liver enzymes. Hope that your oncologist can shed some light on the situation!
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Theresa45- how long have you been on Destiny04 trial? How is it going? Is it a Phase1-2 or 3? Are you Her 2 2+ Fish negative? Sounds like an interesting drug ( Enhertu) how are your side effects?
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Hi y’all
My bloodwork yesterday was still wonky. But I am feeling pretty good overall. Just achy joints- normal for a SERD.
AST & ALT are still double of normal high, WBC & RBC are still low, only thing new is ANC dipped low but not dangerous. Started oral iron supplements 2/day, already taking 6/day mag supplements and it dipped low again so I got an infusion.
CA 27-29 was high at 41 just 2 weeks ago but they only check once a month. CA 15-3 is normal so we are switching to CA 27-29 since it appears to be a more sensitive marker for me.
My next biopsy is in 3 weeks so I will ask the IR if he sees any growth. (I get a random IR, can’t ask for a specific one). Trial scan is Feb 15.
I’m only starting week 3 of this trial drug so I know I need to just relax. It’s just hard to be patient, and I gained weight too. 😢
Dee
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Dee,
Happy that you are feeling well, despite the wonky numbers. I'm sure you will take the weight gain if this drug works!
Hang in there -- fingers crossed that this will be a successful trial for you.
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Nkb - I've been on the Phase 3 DESTINY04 trial at Stanford since April 30, 2020. My biopsies have always come back IHC 2+ and FSH negative. I had some shrinkage initially, but am mostly stable these days. I'll take stable! My main side effect is nausea, but I'm managing that with anti-nausea premeds with the infusion and more anti-nausea meds at home. The infusion is once every 3 weeks which is nice. My quality of life is good overall. I'm hoping that Enhertu will be available to HER2 low women outside of trials sometime soon. I have no insight into when that might be...
Dee - Best wishes in the oral SERD trial! Do you have to have liver biopsies? It's too bad that you can't request a specific IR!
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Theresa and Dee, good luck with your trials. Hope you both get positive results and remain stable for a long time. Theresa, I wish others outside the trial get this drug too. Sometimes the companies allow the drug to be given to a patient as ‘compassionate’ use even though it may not be approved by the FDA.
Dee, my MO monitors my CA 15-3 but not CA 27-29. I’ll ask her about this at my next appointment.
I have never seen such a huge spike in my TMs. After diagnosis of liver Mets, my CA 15-3 had gone up from 31 U/mL to 132. In 2019, after Taxol for 6 months and CMF for 5 months, the number had dropped to almost normal levels.From 03Dec 2020 to 31Dec2020, the CA 15-3 has gone up from 443 to 673 U/mL. Prior to that, on 16Oct2020, it was 292. Since the past 6 months, the TMs have been we constantly rising with abiggest spike seen last month.
Yesterday the NP called and said that my MO has ordered a PET scan since TM can be unreliable and based on the scan results, she’ll discuss my future treatment plan. I am getting a little anxious about blowing through treatments so quickly. I had read somewhere that gradually the tumor cells become chemo resistant and stop responding to any treatments. I hope this is not the case.0 -
Teresa45- yes the liver biopsy is required on the trial. This next one will be my 6th in less than 2 years.
S3k3- I'm glad they are ordering a pet. Scanziety aside,I feel like knowledge gives us some power over the fears of not knowing. Best wishes on a good report! It looks like you have been on 4 lines in 7 years metastatic, from your tag line. That's pretty good in my opinion(but I'm on line 6 in under 2 years) I would think you should have several treatment options still in your bucket. I can't remember if you have a next gen sequencing report to see if any mutations qualify you for some of the newer drugs. Trials can be a good option too. Can you ask your MO about what are other treatments options for the future. There are great stories here of going through many lines then finding the right one that works! I just want to encourage you.Also, Ca 15-3 has been my goto marker but it never told the real story of my liver tumors. for some reason they checked both last time. I was disappointed in the CA 27-29 was over normal but it may be a better one for me to watch now. Each MO has one they prefer.
BevGen - Thanks for the perspective on weight gain. Yes- I will be happy to fight some extra pounds if this treatment works. I lost 50 pounds 2 years ago and have kept off 40 through this metastasis ordeal. I just need to go back to being stricter since this med does not affect my GI and eating is a joy again! 😉
Dee0 -
Dee, thanks for the encouraging words. I could use all the pep talk!
My tag lines under my signature are kind of incomplete, since I had problems adding all the treatments I have had. According to my MO, Piqray was my 11th and Doxil was my 12th line of treatment so I am running out of options. She had actually drawn a chart about my future options and it looks like Halaven, Gemcitabine/Carboplatin and immunotherapy are the only ones left. Since Keytruda is administered along with GemCarbo combo, that would basically mean I have only 2 regimens left.
After Ibrance failed, I started on Verzenio (Abemaciclib), Kisqali (Ribociclib), and later in 2018, I was on Gemzar (Gemcitabine) for 4 months. I was diagnosed with liver mets in Jan2019. Since Jan2019 to Dec2020, I have been on Taxol, CMF, Femara, Piqray and Doxil. My next one is probably Keytruda - I HOPE this works! Historically, my treatments seem to work only for 4-5 months before progression is seen.
MSK has an in-house genomic profiling system called "IMPACT" which had shown that I have PIK3 mutation on the biopsy sample from my bone lesion. Pathology report on the liver biopsy showed that I was PDL1 positive. I haven't heard anything about the genomic profile report for the liver biopsy done on 19th Oct2020. Don't know what happened to that! I will have to ask my MO at my next meeting.
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So, I have yet another date for Eribulin to start, January 14. And I still don’t have all my Christmas stuff put away. Grrrr
I heard about the neuropathy but the pharmacist did not say anything about using ice unless I start feeling the symptoms.
I finished my halter monitor test yesterday. Now it will take a week to get the report to my MO. At least it’s done but I’m not sure if it caught one of my events. Wait and see.
My goal is to get my Christmas things put away and to give my house a good cleaning before I start chemo.
I’ve decided that I’m not going to even look at wigs until after I have my first infusion. Hahaha Then, hair loss becomes real.
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S3K5, you raise an important point of number of available therapies- do they suggest clinical trials? You are coming up on eight years of metastatic treatments, which is wonderful to still be here but there have to be promising options. For one thing, immunotherapy is not a single option you take and then become resistant to, so at least in trials one would think there are multiple immunotherapy combinations that could be tried. It also seems that you have not yet tried Enhertu (ADC)? which may be an option because many MBCs do have Her2-low expression. And whereas most chemos have a PFS on the order of 4 mos or so, Enhertu was more like 16-17 mos on heavily pre-treated patients..
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Cure-ious, thank you for your valuable input. I was under the impression that Enhertu is for Her2+ve patients, but I m Her2-ve. Isn't it an anti-Her2 antibody drug conjugate that targets Her2 receptors?
Just now I received my genomic profile report that says I have low TMB. So I am trying to find out what this means in terms of response to immunotherapy. My biopsy report showed that I was PDL-1 positive, so I am hoping that will help with a good response to Keytruda. You are right, immunotherapy is administered with various combinations which opens up more options for people like me who have gone through multiple treatments.
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SK35 – Enhertu is FDA-approved for HER2+ breast cancer. I'm on the DESTINY04 clinical trial of Enhertu which is enrolling patients who are HER2 low (IHC 1+ or IHC 2+ AND FISH negative). As Cure-ious said, many patients with ER+/PR+ metastatic breast cancer are in fact HER2 low. Enhertu targets HER2 proteins on breast cancer cells, but it has a "bystander effect"; that is, when it releases the chemo payload, nearby non-HER2 expressing cancer cells are also killed. Another ADC that is very promising is Trodelvy. It is approved for triple negative breast cancer and the TROPICS2 trial is evaluating Trodelvy in hormone positive breast cancer. It targets TROP2 and I've been told that TROP2 is expressed in hormone positive breast cancer too, so it should also be effective in hormone positive cancer.
Dee - I hope that your liver biopsy goes well and that the SERD trial is working for you! My oncologist follows both CEA15 and CA27.29. In my experience, the CA 27.29 tends to move earlier and show a larger magnitude of increase (or decrease). In my case, it is a more sensitive marker.
Grannax - I'm glad you have a date for starting Halaven. You inspire me with your goal of cleaning the house before starting chemo. You are an impressive lady!
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Theresa, thanks for asking about my Her2 number and bringing up the possibility of Enhertu for the future. I am going to request the pathology report from the last liver biopsy and see whether it showed Her 2 low. I know it was Her2 negative but I do not remember the number. Even when treatment is working we are always keeping an eye out for possible future treatments. Very good that your trial has worked for you! You said shrinkage at first and now stable. Is that on CT? Have you had a PET scan? My CTs showed shrinkage from February onward, then the most recent one no shrinkage but stable. However, the PET still shows no activity, so maybe it just takes a while to finish taking out the garbage. That’s my story and I m sticking to it.
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SK35
I see you have been through a lot of lines. Hopefully you can respond to Keytruda if that is next. I know of another HR+ person who went to NED on Keytruda and she was pdl1 positive- got the drug in compassionate use because her insurance did not want to pay.
Are you open to trials? Are you near enough to NIH to consider a trial there? I have been following NIH trialNCT04574583 which has a cohort 1 where ER/PR+ can fit. Cure-ious had a great summary of it on the clinical trial thread.
Hoping the best- let us know about your pet and plans!
Dee
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Thanks Theresa, to add on- The HER2-positive cancers have actual amplification (ie multiple copies are made in the cancer) of the region of DNA that includes the HER2 gene, and therefore lots of HER2 protein gets made. However many the other breast cancers that lack this amplification nevertheless express some HER2 protein from the normal (not amplified) gene, and/or may have mutations that make the HER2 protein extra-active such that it may even help drive the cancer growth. For these cancers that have HER2-low expression, there is sufficient HER2 protein on the surface that can be used to target a chemo payload- these cells bind and are killed by the Enhertu ADC drug, and the chemo leaks around inside the tumor and can kill neighboring cancer cells, even if they do not express HER2. So the majority of MBC patients can use this drug. But even if the cancer expresses no HER2 at all, there are other ADC drugs that can be used instead such as Trodelvy, which targets the Trop1 surface protein- SusaninSF is currently doing well on Trodelvy and calls it a game-changer! The advantage over traditional chemos is that the drug is targeted to the cancer, rather than attacking all cells in the body that are actively dividing (mostly hair and gut cells), and the efficiency seems to be much higher than traditional chemo so it works for longer
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Well that’s good because at some point my poor gut will need a break.
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Grannax, wait, we don’t need to have Christmas stuff put away until Valentine’s Day, right? I would go ahead and use cold gloves and socks and not wait for neuropathy to show up.
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Theresa, Dee, Shetland and Curious, thank you for your educational insight into Her2 negative versus Her2 low.
Here is my pathology report and the actual terminology used:
ESTROGEN RECEPTOR (clone 6F11, Leica): 1-5% nuclear staining with very weak intensity (see note)
PROGESTERONE RECEPTOR (clone 16; Leica): <1% nuclear staining
ANDROGEN RECEPTOR (clone SP107, Ventana): 80% nuclear staining with moderate intensity
HER2 (4B5, Ventana): Negative (1+)
PD-L1 (clone SP-142, Ventana): Positive (Staining of infiltrating immune cells occupies >=1% of the tumor area)
Based on the above, my MO said that since the ER/PR/Her2 receptors are very low, she'd focus on the treatments for TNBC. I have not discussed Enhertu and Trodelvy yet. It is good to know that these could be our future options if all else fails.
Dee, I am not located anywhere near NIH. My MO at MSKCC (New York city) is looking into clinical trials that I may be eligible for. I was told that since I have had so many lines of treatments, at present my options for trials are limited.
On 20Jan, after my PET scan, I will find out if my current treatment is working or not. I called my MO's office yesterday and the NP said that I shouldn't pay attention to TM as they are very unreliable. I had heard from someone else on this forum that liver ablation can mess with TMs. I wasn't aware of this correlation.
To everyone who responded - Thank you. I learn so much from this forum.
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S3K5...who is your MO at MSK...I consulted there when originally diagnosed...I can't remember the name of the doctor she was a blond female...I wound up going with Columbia...Dr. Hershman...I am in VA now so I no longer go there.
I believe if you have PDL1 (I do too....) you should look into the chemo I am on Eribulin...works great on liver mets...
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Nicolerod..how are you?
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Nicole, I went for a second opinion consultation with Dr. Shari Goldfarb at MSKCC, NYC. She referred me to Dr. Louise Ligresty in Basking Ridge, NJ, but this doctor who moved to North Jersey location in Sept 2019. So from Oct2019, I have been seeing Dr. D' Andrea who visits NJ facility every Thursday. I love all the doctors at MSK. Treatments are coordinated and it seems like they work as a team, which is very convenient.
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Okay, folks, even though I haven't had my post re-do ablation MRI (scheduled for Jan. 14) it looks like I"m moving on from Ibrance/faslodex to keytruda as a single agent fairly soon. Have been emailing back and forth with my MO. My CA27-29 numbers have gone up yet again (though not by as much) so I guess we are still not sure if it's aftereffects of the two ablations, other activity in my body, or whatever. But I am very interested in immunotherapy, and so I am going to take this opportunity and go on it. For the first two treatments, I will receive keytruda every three weeks. If those go okay, then I'll move to six weeks after that.
Anyway, we'll see how it goes and I'll keep you all posted. Never a dull moment, as they say. Hopeful that this treatment will be a better one for me.
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BevJen- I posted to you on the Ibrance Thread. I will be interested to hear how you do on immunotherapy. I do not know if this would be an option for me in the future. My F1 studies at diagnosis (3+ years ago) showed a low tumor mutation burden. Can that change over time?
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Candy,
I am no expert on this by any means -- in fact, when my first F1 report came back in June 2019 and it said that I had tumor mutation burden high, I was a bit gobsmacked. It's also kind of rare in lobular cancer, I believe (trying to remember all I've read about it.) But I've also read that TMB-High is more common in metastatic cancer, and that further into treatment you could develop more mutations. Anecdotally, I'm. not sure that we've seen that bear out on BCO, but that was mentioned in something that I read.
I think this is why a lot of MOs believe that if you have progression, any new lesions should be biopsied. That way, the docs can tell if there are any other avenues of treatment that might have opened up.
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Yes, candy, TMB can change over time, because treatment pressures the cancer to find new ways to do its evil work. My first F1 showed few mutations, next showed more, latest one shows high TMB.
Bev, I am glad you will be able to get the treatment that your gut is telling you. I want to see you written up in a journal as a brilliant success story! Will you get a covid vaccine now, before you start immunotherapy? Is keytruda scheduled to start after your MRI?
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