How are people with liver mets doing?
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S3K5,
WOW -- just wow. I'm sure you were gobsmacked by that Telehealth visit! I know I would have been. Apparently the tumor they tested for me shows 0 finding of HER2 positivity; the pathologist said that the actual removed lesion was weakly estrogenic, but that the surrounding tissue/encasing tissue (not sure what) showed regular estrogen staining. So I am the opposite.
Having said that, I think the immunotherapy stuff is really positive. I'm guessing that your MO will recommend tecentriq (atezolimumab) and Abraxane (I think this is what Moth is on). Why are you unsure if you will qualify for it? I think the FDA has approved for TNBC already.
What is the androgen measurement? I'm not familiar as to whether I've even seen this one before.
Isn't Trodelvy also for TNBC? That's that weirdly named one -- sacitumab Gove-something. I know very little about that drug, but some people in my MBC discussion group are on it.
Good luck sorting through all of this. If you want to look at some info about immunotherapy treatments, look at the Cancer Research Institute. They are a pro-immunotherapy group and they run patient workshops, etc. I think some of them are available through their website. I've found them to be a greatly informative organization. One of the docs at Hopkins (where I go) is involved with them.
Best of luck. Thinking good thoughts.
Bev
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Moth, WOO HOO on the compassionate use approval! Very happy for you.
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Shetlandpony, I was so dejected about cancer dx and then later, the side effects from chemo, that I did not have the energy to get out of bed.
So every day, I had to find 3 things to bring joy and be happy that I accomplished those goals. At first, I kept them easy..like brushing my teeth, combing hair. Then progressed to watching a movie, putting on real clothes. Later, I added popping corn, watching Murdoch Mysteries, savoring chocolate. Much later, a walk outside, buying fun jewelry. It was gradual, but it worked. My mind settled.
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Moth really happy for you!!!
S3K5...wow...about that mutation change!!! I am ER + PR- HER2- and I have PDL1 10%.
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BevJen, thank you for your reference to Cancer Research Institute. I'll look them up.
You are right - my MO mentioned tecentriq + Abraxane or Pembrolizumab+Abraxane. She is waiting on the IMPACT testing report(genetic profiling) to make a final decision. My MO thinks that I have mixed clones - some hormone positive and some hormone negative lesions in my liver, though it is hard to tell since only one lesion was biopsied. This was the one that did not respond to Piqray and kept growing. Other lesions did not shrink but did not grow either. I don't know if the insurance will authorize the immunotherapy since it is only approved for TNBC but mine are mixed clones. We will have to wait and find out. I have heard that immunotherapy is easier than chemo.
I'll check with Moth about her experience with Tecentriq+Abraxane combo.
Trodelvy has one of the nastiest side effects! It is a conjugate of antibody and a drug which delivers directly to the cancer cells. I'd rather reserve this as a last resort drug!
Androgen positivity is something new to me too - did not know they test breast cancer cells for this hormone. I was under the impression that it is only tested in prostrate cancer. Guess, we learn new things every day!
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Yes, I immediately thought of pembro + chemo. The androgen inhibitor drug may be Enzalutamide, brand name Xtandi. Do you have Bestbird's guide? That would be really good reading for you right now. If you have a biopsy that says TNBC, I think that is good enough for the insurance company. With mixed clones, maybe at some point your onc will also do a liquid biopsy, which will test the whole “soup" rather than one lesion. Kind of a shocking change, but good to have an explanation for why treatment has not worked, and you have good options at the ready.
The androgen receptor (AR) is now checked the same way as ER and PR.
Bev's “Gobsmacked by Telehealth" has to be added to our memes.
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I like that, Sandi. Perhaps I will try each day for something accomplished, something beautiful, and something connecting (paying attention to relationships). Oh my gosh, that’s ABC.
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SP..too funny..ABC. Little slow, but got it eventually.
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Grannax, So sorry about your liver mets. It sounds like you have a good team and you are a strong woman.
50sgirl, I am not ready for snow or these cold temperatures! I had the wood stove going today. I'm always cold (except for the hot flashes) but it seems that I'm even colder now that I'm getting the poison cocktail every week. Maybe it's my imagination. What part of NH are you from? I live in central NH off of 89. Do you know of any support groups in NH for bc patients? I'd like to connect with some women locally who are going through this journey. I'm still looking into Dana Farber. It's a drive but I would like to go there.
Denise
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Grannax – I'm so sorry about the new liver tumors! I will be praying that Halaven and/or a third Y90 will wipe out your liver mets. I'm touched by all the outpouring of love to you from so many. You have clearly touched many of us. Hugs, prayers and very best wishes!
Moth - I'm sorry that your lung met has progressed. Congrats on getting atezo approved on compassionate use!!! Your description of steps forward, back and sideways is perfect… I hope that atezo/taxol and the lung radiation will put you many steps ahead of your cancer.
S3K5 – Thank goodness that you had the liver biopsy! How long ago was your last biopsy and was it a liver biopsy? I'm shocked by how much your cancer has changed. Your treatment will certainly change based on your latest biopsy results. I hope that you are feeling 100% soon! I'm also a little sore in my right side from the microwave ablation.
Nicole – More excellent news from the spine MRI! Congrats! Your good news is very welcome!
50sgirl – I will be praying for a good scan for you on Monday.
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Dear BevJen, I know you are fine and in control- sorry "shout-out" went to you too... I just wanted to encourage everyone to keep on going. And in the end, this shout-out was also to myself and my wife... you know, sometimes what I write and mean differs... I speak English quite freely but lack that "ultimate language feel" that you native speakers have:)P
S3K5, I am sorry for those mutations:/ But you know... it is exactly what I wrote - you were beating the disease from one side and it totally lost some properties but got new ones (not that it is good), and now new class of medicines, including newest IO drugs come handy. The field here is getting stronger and stronger, and now you have Pembrolizumab, Atezolizumab, Sacitizumab Govitecan, Leronlimab, few others, and their combos... Mutations show cells were very "uncomfortable" with last treatments, and it is their weakness. We can suspect these new drugs will work very well for you.
Moth: huge congratulations for breaking the ice and getting that combo.
Saulius
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Saulius,
No apologies needed! You definitely speak and write English a lot better than I could ever speak your language! I just didn't remember if I had posted something that indicated that I was at a rough decision making point, as some others were expressing.
Best to you, your wife, and your son, and thank you for always encouraging everyone here.
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Thaaanks Bev!:)
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BSaulius, I so appreciate your optimism and cheering! Love to hear your input and how you bolster us.
I'm super glad to be able to continue with atezo and my MO wants to switch to abraxane too which is the only clincially proven one to have an advantage so I'm hoping I'll get an extra boost from that. If that fails though, there's a good chance though that all we'd have left are the trad chemos for met triple neg. So I'm especially excited about local treatment. I'm looking at a SABR trial for what they call oligo-progression. It's randomized alas so no guarantee I'd get into the treatment arm. I meet with an RO on Nov 10 to learn more.None of the immunotherapies are avail here or they're avail but not approved for breast cancer (just for a different cancer & then our MOs can't prescribe it offlabel), or it's 'approved' but not paid for by the pharmacare - hence my struggle to get atezolizumab and stay on it.
Pemroblizumab and Trodely are not being used yet and unless a trial opened, they don't see a way of getting them. I am close to the US border and technically could try to access some treatments from there but without any insurance for US healthcare that would add up quickly.
Anyway, we all have our struggles with treatments and failures and options at least partly dictated by our lives and geographic locations so there's that.
I think as always, we just need to keep kicking that cancer can down the road; any time we buy is time during which something could change, a new treatment, an old treatment repackaged, a donation from some foundation could come in and make a new technology or procedure or medicine avail. So we keep kicking on.
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This tweet cracked me up so much earlier this week. We keep moving forward!
oh lol, it's funnier when I actually post the image
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I finally called my IR office today. He still needs to review all of my info before they schedule my BX. I do think it will be scheduled for next week.
From the past I know that he is okay with me texting him. So, I did. He's supposed to get back to me this afternoon. He's going to call me and answer a few questions. Specifically, if he's thinking another y90 is possible and could do some good. If yes, could he do BX and mapping the same day?
If we decide to do that, it could still be six weeks before I start Halaven. That's okay because he would zap the largest lesions and my lung mets are stable.
As you can see I'm in fighting mode again. Problem solving means my brain is in a better place. Thanks for helping me get back to myself again.💞
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thank you for sharing this, I was just diagnosed yesterday with liver Mets .
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Welcome, jenbunny. Although I'm sure you never wanted to be on the liver mets thread, it's the right place to be for knowledge, personal experience and encouragement.💞
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I am so sorry to meet you under these circumstances Jenbunny. I was in your shoes 8 weeks ago. I mostly stay quiet here and disk in wisdom of these ladies.
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Welcome, Jenbunny. Sorry about your new dx. There are few newbies here and many friendly, supportive ladies with more knowledge and experience.
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moth, great news about the compassionate access to the meds. I hope the SABR trial works out for you.
Grannax, I'm glad you found your fighting mode again. I think sometimes we just need a little time to grieve the loss of something that didn't go to plan.
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Welcome, JenBunny, but sorry you must join us.
Grannax, I agree with SeeQ. Sometimes we need to cry and grieve a changed course, but I'm so glad you found your fighting mojo.
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Nicole, such wonderful news! I eagerly await more, especially regarding Y90. If nothing else just being able to breathe a little more deeply for a few months helps so much!
leftfootforward-not having any medical training I nevertheless see this as a list of "things to keep an eye on" as opposed to progression. Inflammation can be due to so many factors. Really good that postsurgical areas look stable. I've had several CT scans with "suspected" this or that, that never amounted to anything. Part of my "new normal" is trying to revise my definition of good news. Good news now means "not bad news" and I would put your results in that category. Hope I am right and that your MO goes through results with you!
kattysmith, yes it is a mystery why they don't get my CT results back sooner. When I ask the answer is basically backlog. We need more radiologists. It was the same pre-COVID. Of course they prioritize acute cases (in the ICU you get results immediately) but can't radiologists on lockdown read films from home if they are using a secure system? The other reason is that Sweden has a policy where you get your results together with a formal recommendation regarding next steps. So results that require review by the all-powerful wizard council (tumor board) take longer. Finally, I picked an MO who mostly does clinical research, not many regular patients. So he's close to cutting edge research but doesn't have much clinic time.
I have discovered that I can call my palliative care team and basically ordered myself a full blood panel, which they come do at home and report back within 2 hours. My CA 15:3 is down even more--from 1320 to 53 after 4 months on Olaparib (PARP inhibitor). That's an inch away from normal...
MO appointment on Thursday if the world has not ended by then. In the "gratitude" category I did not expect to be able to vote in this election when I got my diagnosis as metastatic in 2017. Also good news, might be approved as a patient advocate for the San Antonio BCS, virtual this year. Fingers crossed! Stay safe everyone../Amy
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Dear Arolsson, 1320 to 53 in 4 months??? Are you kidding me, this is simply WOW... something really good is happening with you. Does that change in markers in any way translates into your physical health improvement, I mean, do you feel any better? And... We will be absolutely thrilled to hear you at SABCS'20. You are the best self-advocate on this planet when it comes to this disease, you, your family. What a great mom your children have...
Another stupid question: I was working on a scenario, what would happen if my family and my wife would get infected with Covid-19? As the world is deeper and deeper in all of this, I start to ask questions. Would she still get maintenance treatment (HP) depending on how she feels? I have written these questions to our NCI and wait for answers. When I know, I'll let you know too how they see it here. Does any of you know what are the guidelines in US/Canada/Rest of Europe? Thanks a lot...
Saulius
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Amy,
I second Saulius' WOW. That is an incredible drop. It seems that you are on the correct drug at this point in time.
Saulius, I don't know that anyone in the US can answer your question about maintenance treatment at this particular point in time. Covid is going gangbusters right now in this country, and the news has started showing interviews with doctors, especially in more rural areas, who are saying that the time may be coming when they will have to ration care for Covid patients. It only goes to reason, then, that that would mean a lessening of any kind of medical services, including services for cancer patients, in those areas. But this is a big country, and I'm not sure how this translates to more urban areas with big medical centers.
Good that you have posed this question to your NCI. It's certainly not a stupid question -- it's a very complicated one, both there and here.
When will 2020 be over? What a year.
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Arollson, I'll third the WOW on the TM drop. That's amazing! I hope it does translate to feeling better physically.
Saulius, I would hope the treatments would NOT fall under the umbrella of elective treatment, just because the patient goes home in between. My diagnostic imaging was delayed due to COVID, but I was under the impression known dx treatments continued - at least here in my small city.
I'm planning travel, soon, to visit my daughter, whom I have not seen since Christmas and my summer diagnosis. I'm hoping nothing changes to prevent the trip.
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hello everyone, Kate from Alabama here. I've been catching up with you all and just had to say first, to Nicolerod: I am so very very happy that they have finally found a treatment for you that works. I have prayed for you many times.
And, Grannax, I love your spirit. I think you are amazing and strong and if anyone can beat back the beast you are she.
We have been fighting hurricanes in my part of the world. At least that is just a temporary devastation. Hang in there everyone. ❤️
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Kated... awww thank you so much for praying for me!!!! I don't remember seeing you here...but wow that is such a blessing to me!!!!!
Stay safe with those hurricanes!
You have been on Ibrance for 4 years? (according to your profile notes) wow that is great!!!! I don't think I met anyone with liver involvement that has gotten that long on Ibrance. AWESOME!!!
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Hi Nicolerod, I am excited your MO will put you on antihormonal after Y90. I thought with my FGFR1 amp mutation that was no longer an option for me. As my MO said, you never really know if any mutations drive a current progression.
So this news has really cheered me, along with your great response to Halavan. So long deserved..really happy for you. Now go get those liver mets!
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Thanks everyone! I can attest to feeling a darn sight better than I have in years. The main side effect is fatigue, one we are all familiar with, and when my body just fades likes someone pulling a plug, I notice that my neuropathy symptoms are also more noticeable. My blood levels are just at the level where transfusion is voluntary, but they are stable there (about 90 hemoglobin, I think in USA that's 9?) In any case Thursday is my MO appointment, then we'll see what the CT says.
As far as cancer treatment during the pandemic goes-in Sweden there is high priority for cancer patients to maintain infusions, appointments etc. A patient with Covid would still be able to get regular cancer treatment but it would depend, as usual, on how the individual is doing. Most cancer drugs like chemotherapies have a long half-life--in other words skipping one treatment doesn't often have a meaningful clinical effect. So if your regular blood work is OK they would probably suggest that you skip a treatment, but if you have an extended illness they would treat rather than skipping several treatments. In Sweden we can get home care, since they would never let you in a cancer infusion ward if you were infectious. Or you could do your chemo in the covid ward. Don't know if there is a common EU practice guiding this, my guess is that there is not./AMY
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