How are people with liver mets doing?
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KC1010 - I never had the ESR1 mutation. The mutation that appeared in September 2017 and disappeared in November 2017 was a series of amplifications of the FGFR pathway. It's a different way to evade hormone suppression and also CDK 4/6 inhibitors. So if you believe that, then there goes a lot of treatment options. Poor prognosis, as you you mention.
The problem with ESR1 mutations is that they are statistically associated with resistance to aromatase inhibitors like anastrozole, letrozol and exemestane. However, SERDs like fulvestrant seem to work just fine.
It's worth looking into how strong the correlation is between ESR1 mutations and resistance to A/I. If you are not good with Dr. Google, then your doctor must provide you with this statistic to consider before you use this mutation to guide treatment decisions. A statistically significant correlation can still be vanishingly small.
And yes, these mutations can "go away", re-sensitizing cancer to hormonal treatments. This happens, generally, when you go off hormonals for a while and do chemo, for example. A period of time on a different class of drug can wipe out the hormone therapy resistant cells ... or so I speculate. I don't think any researcher will say conclusively why women overcome hormone resistance, but it happens.
Finally, a biopsy only measures a small piece of one tumor. Cancer can be highly heterogenous. It's impossible to say from a biopsy how prevalent that mutation actually is. For this reason, it is challenging to use genetic testing to guide treatment. I am not putting many chips on personalized medicine and targeted therapies.
>Z<
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Hi gals- learned from my genomic testing results that I have an actionable mutation, which is AKT1. This is a Tier II class with no available FDA approved drugs, but with a few AKT1 inhibitors in the pipeline. My MO is enthused, and I am pleased to have one more weapon in the arsenal. This will most likely be my next treatment, after, or in combo with the fulvestrant. AstraZeneca has an AKT inhibitor being used in a trial in which Maine Ctr. for Cancer Medicine participates. We'll see.
Babs, congratulations on the birth of your absolutely gorgeous grandson!
Z- sorry you are having to weather a stomach virus-just plain ugly. Treat the hell out the symptoms with the usual-liquids, rest, ?BRAT diet.
May the force be with each of you. MJH
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P.S. DH just showed me an article about a vaccine for triple negative being tested.
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Hi MJHJAN1014 - I have the same gene mutation (AKT1). I am starting a clinical trial tomorrow that targets AKT1. The NON FDA approved drug doesn't have a name yet. It is an AKT inhibitor called MSC 2363318A and I will be taking it with Tamoxifen (which was my first line of treatment back in 2014).
Although this trial is not paired with fulvestrant you may still want to follow along.
Do you live in Maine? I'm in Massachusetts being treated at MGH in Boston.
Here's the link to the trial
Clinical Trial Identifier: NCT01971515
And here is the link to the thread I started here on BCO for this trial.
Clinical Trial - AKT Inhibitor (MSC2363318A) and Tamoxifen - I haven't updated this thread yet. I just had a liver biopsy on Friday and an echocardiogram and eye exams on Wednesday. Tomorrow I take my first dose and spend 10 hrs at the hospital having my blood tested at varying intervals. Fun fun fun.
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MJH and Cathy, I too have the AK1 mutation and F1 said Everolimus ( Afiinitor) and Temsirolimus for therapy. I see MO tomorrow but will ask about the clinical trial too. Let's keep exchanging info.
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MJH and Cathy, I too have the AK1 mutation and F1 said Everolimus ( Afiinitor) and Temsirolimus for therapy. I see MO tomorrow but will ask about the clinical trial too. Let's keep exchanging info.
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Animal Crackers - There are other mutations that amplify the AKT1 pathway indirectly so it seems to me the trial you are on should have broad applications if it works. Fingers crossed.
>Z<
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Z - thanks for the explanation/information. I’m praying the faslodex does the trick for a good long while. I’m still waiting for the Specialty pharmacy to get me the Kisqali so I can start. Hoping tomorrow..
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Z I use colloidal silver when I have illness like that. And olive leaf extract or capsules. And oregano oil which is food for viruses.
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MJHJAN1014: is the TNBC Vaccine to prevent recurrence or treatment recurrence? Can you post the article.
Thank you
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Hartrish-DH saw the article as a stock recommendation of all things. The company is TapImmune. The first patient was just enrolled in a Phase II trial at Mayo Clinic aiming for 280 participants. The vaccine is TPIV200. Go to the TapImmune website and scroll down to product info-you'll see a TPIV200 choice. The trial must be on cancer.gov, but I did not check. From what I read, results from the Phase I trial looked encouraging.
Animalcrackers and Lindalou- thanks for piping up about the AKT1 mutation. I am still researching it. Animalcrackers, the trial you are starting is one of the ones that came up as a possibility on my lab report. I do live in Maine and am totally on board with traveling to Boston if necessary. My MO and I are in the early phases of deciding which trial I will do. The one that appeals to me is NCT02465060, with AZD5363. Pretty sure Dana Farber is also doing this one. It is also a Phase II. It is not exclusively for breast cancer. Lindalou, the AKT1 mutation seems to lie in between PI3K and mTor in the pathway regulating cell metabolism. So it makes sense that Everolimus would screw up whatever Mr. AKT1 was up to. I think a combination of therapies is recommended with AZD5363, so maybe both? or a hormonal as well.
Have a peaceful day, all. Join me in unison as we say "screw MBC"! LOVE, MJH
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P.S. Hartrish-the vaccine is considered therapeutic.
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Thanks everyone for your advice on the stomach flu. I went with vinegar, Tylenol and staring at the wall for a day. BRAT wasn't an option since I could not eat anything. Would have tried turmeric and cinnamon but I fell sick fairly in my vacation rental where we did not have any spices and I couldn't move from the bed for 30 hours. Thank god we had no guests coming. Functional, just exhausted.
I talked to my new oncologist today and ... I have a new oncologist. Yay. One thing he mentioned is that the exact point mutation matters. For example my GATA3 gene is mutated at p.M401fs and that address will determine whether or not the alteration effects the relevant pathways. For those of you who like to role up your sleeves and dive in to your genetic reports that is a string to pull ...
>Z<
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Sounds like he is a smart cookie, will be interested to hear what else he comes up with, Z!!
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Sorry to jump into this thread since hopefully it is not in my liver...yet. However, it seems you folks have been active in discussions of TMs. Have any of you had LDH (lactate dehydrogenase) tested? This is a new one on me and, of course, it came back elevated.
Pat.
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I always thought LDH was used to measure heart health, but I read a bit and found that it indicates damage to any organ. I haven't gotten LDH measured and I have not heard of it being used to measure damage to the liver. I am interested in what they might be looking for? Do you have known heart issues? Could the be looking for damage to your lung?
>Z<
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Interesting. My heart is fine thank goodness. Other than the one tiny problem of an alien invader taking over my body, I am in perfect health.
I have my appointment with my MO tomorrow and will ask him about it. We are trying to figure out if the Xeloda is working - my body is definitely sending mixed messages, the CT after two cycles showed stable. We opted to push ahead with two more cycles but I get the sense that he wants to get a better handle on this. It’s been tricky given the absence of a solid tumour and primarily sclerotic bone lesions. I also had a TM checked, he hasn’t been following them, but the lab results have not come in yet for some reason.
Thanks for confirming this is not something familiar. To be honest, when I read the lab req I read LDL and wondered why in the heck they were worried about my cholesterol. Lol.
P
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I am in cycle 1 , 2 more pills to go, ibrance Faslodex combo. I had 3 liver lesion 1-3 cm and spine met. My sharp right liver pain is 85% gone, abdominal swelling and liver crowding 55% improved. Can eat more but started supplementing with high calorie protein fruit smoothies that I make. 950 calories daily. Since starting meds I have lost about 3 pounds weekly...so I am hoping to recuperate during off week and maintain.
Good thoughts to all
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Good to hear Schoolmom - Have been losing about 6 pounds a week but it slowed last week to 5. Making a steak tonight. And smoothie w plant protein powder. Been off Xeloda for 3 weeks and still dragging and having trouble eating so I think some of this is definitely the liver lesions.
Z - yeah on the new oncologist who can talk the nerd talk! I love when they talk over my hear (probably not over yours though!!!) and have a plan and a vision. Am hoping for on of those MOs next.
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Sadiesservant- LDH or LD, as it is now called is lactate dehydrogenase. It's an enzyme that was most commonly used to diagnose myocardial infarction. It has five isoenzymes, and when they are separated out by electrophoresis ,the lab can quantitate them. A "flip" of LD1 and LD2 seventy two hours after the cardiac incident indicates MI. An elevation of LD4 and LD5 indicates liver issues. Total LD can elevated for lots of reasons, some of them non specific. Maybe the Xeloda can cause it?
Hope you get resolution soon. and that it's nothing. MJH
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Hello Ladies,
My recent PET scan was not great, from about 3 lesions on my liver to about 12. There is lung involvement and also now a new spot in my brain.
I have had 2 rounds of taxotere and navelbine and I can already feel improvement in my breathing which is great however my tissue samples have been sent to the states for the "Caris" test, so we are hoping there will be something else I can go on.
I thought I read a while ago that someone else had the Caris test but I can't remember who that was?
Im sorry I can't keep up with everyone but I absolutely love being apart of this inspiring group.
xxx
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Nina. So sorry to hear about your scan. It was Z who had caris testing. I'm still waiting on foundation one testing. Hoping I won't need it yet but January PET will be the decider. Keep us updated.
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Nina27-thinking of you as you digest this new information. MBC never seems to give us a rest. Wishing you strength and clarity.
Love, MJH
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Hello, Everyone. I have been off a while because I had to deal with not one, not two, but three family emergencies. Still dealing with them in various ways, but out of crisis mode. And I am still standing!
Welcome, Kacy2. There are really effective anti-Her2 meds, so people with Her2 positive stage iv can have very good results. And keep in mind that the treatments used for stage iv ER+ bc do not typically beat you up the way chemo for early stage does. They are meant to help you maintain quality of life.
Z, I will never use Tamoxifen again. I think it fed the early stage ILC. The report you showed is what I want. The less guesswork, the better. What should I ask my onc for? Do we have to contact Mayo Clinic?
Regarding doctors' clinic notes, I fortunately have a super relationship with my onc, but after obtaining my notes (for a meeting to discuss trials at another institution), I still had to submit four factual corrections about my diagnosis and treatment history. I imagine the reason is the sheer volume of patients and paperwork they deal with.
Bluebird, I sincerely wish for you to connect with an onc who will fight for you and be hopeful.
MJH, hoping Faslodex is the ticket for you. It looks like you will be combining it with a targeted therapy? The main take-away I got from watching a recent bc meeting was that combined therapies can result in longer effectiveness.
KC, best of luck on Faslodex and may you enjoy an awesome holiday season with your precious daughter. I had the Guradant 360 test, but am keeping in mind that I can do a biopsy for Foundation One or Caris genomic testing in the future, because they cover more genes than the Guardant 360 liquid biopsy. Also I'll ask for an MSI test. Regarding local treatment, did you talk to a liver specialist specifically about Y90/radioembolization? I have multiple mets in both lobes (or maybe not right now) and was offered that, even though I'm not a candidate for other local treatments.
Robin, Yesss! It's so good to hear your TMs went down.
Claire, thank you for passing along your onc's opinion about ribo and abema. I've put that in my notes.
Z, excellent on the pole jogging. Can you tell me the name of your RO who published about radiation and immunotherapy?
MJH, actionable is a great word! And there is AnimalCrackers suggesting a trial. What a valuable group we have here.
Schoolmom and Nina, glad you are feeling better! Schoolmom and Bluebird, an oncology nutritionist recommended nuts to me when I was trying not to lose weight. They are super-good for you.
Aurora, did you find the local treatments for liver thread?Sending everyone wishes for some holiday fun, relaxation, and beauty!
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Shetland - I am speculating about Mayo from a scan of their website. The lab that did my pharmacogenomics testing is in australia and it is called Genomes4Life. Your onc needs to order it and insurance will not pay. PM me for details and a full copy of the report.
The RO at the Mayo Clinic who specializes in triggering an immune response is Dr. Sean Park. His research is ... research. There is no defined procedure for evoking an immune response with radiation and the only repeatable experiments have been on mice. You need to be working separately with a doctor who does the immunotherapy treatment as radiation may potentiate other therapies, but is generally not going to work on its own as an immunotherapy (although I have this friend .... )
>Z<
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Nina - saddened to hear the news. Keep on everyone in your team to move quickly and do their jobs, that I know. Learned the hard way. The best to you.
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Shetland, thanks for the words of encouragement! What a time to have to juggle multiple family crises. Hope all is well now and you enjoy lovely holidays. Best, MJH
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Auroaya,just posted the following message on the Bone Mets Thread. I know that she is active here and that youwould want to have this news.
"Hello everyone I'm in the hospital. Seems this horrible disease has moved to my liver and Gemzar chased them t to my brain. Dizzyness all week and fall yesterday . Please pass it on. I can hardly type..
Aurora"
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oh goodness 50sgirl thanks for posting about Aurora. Hope she’s ok and didn’t break anything when she fell.
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prayers for aurora ...
>Z<
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