How are people with liver mets doing?
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I was diagnosed with stage II triple positive breast cancer on 10/23/17 but in my pre-chemo PET scan on 11/21/17 and then biopsy they found liver mets. Reading online statistics that people with stage IV with liver mets live less than 5 years, I am really scared now. My first chemo is this Thursday so I know I'm in for a long road but I guess I'm wanting some reassurance that I wasn't just dealt an instant death sentence. Thanks.
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MrsALG indeed you or we don’t have an instant death sentence stamped in our front heads after four years in bone only disease I progressed to the liver and I’m confident I’ll live to see it shrink. Nobody knows how long we have. Enjoy your everyday life and be an advocate for your self. If you want second opinion look for it.
Welcome and come here in the future for company and support.
Aurora
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Welcome MrsALG-
We know it can be shocking and very scary to hear you have liver mets. Hopefully being here and reading some experiences from members in your shoes will be reassuring for you, and we hope you find this to be a supportive place.
The Mods
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Hello, mrsALG. I am sorry you have to be here, but you are welcome. I know the shock, fear, and grief can be huge. Breathe, tell yourself you are ok right now in this moment. Statistics do not tell us our own individual story, and even for group averages they must rely on already-old data. Nobody knows your future. You will get your balance and work out how to live with this diagnosis. You see many people here doing that.
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Mrs ALG- I am 5 years ouT today actually. So don’t rely on the numbers. It’s scary but there is hope, especially on this website.
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After my heavy neuropathy, my weekly dose of taxol was lowered by 25 % - and since then I've had two doses. Next ( the 5th) is up tomorrow. Neuropathy is now minimal and do-able at the moment.
On the full dose I was happy to register that my liver pains disappeared. However now on the lowered dose they are back constantly. I fear that it means that taxol is not working. The pain is quite heavy - caused by an enlarged liver and progressing mets I fear.
How long did it take for those of you who've had weekly taxol to know that it was working? Did you have liver pain in the process? I've was told that taxol is a very good chemo - but also that it only works on about 30%. Personally I find that to be a very poor result and doesn't make me hopeful and optimistic at all! Unfortunately I cannot have a new scan before January - and will possibly not be transferred to some other drug before the scan results. What might be the next line of drug? (all hormone-treatment, faslodex/ibrance already failed).
And I need a bit of hope. Did anyone else with VERY aggressive liver mets finally get them under control for a period - or is it too much to hope for?
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Momall, praying all went well with the second Y90 procedure. You and Dani on always on my mind!
Hugs,
Robin
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This in my inbox this morning, looks promising!
Oncolytics Biotech® Receives Favorable Final Advice Letter from the European Medicines Agency for REOLYSIN® in Metastatic Breast Cancer
- Proposed phase 3 study design is found acceptable and can form the basis of a Marketing Authorization Application (MAA)
- Feedback continues to support our focus on HR+/HER2- patients that reported a statistically significant increase in median overall survival by nearly doubling from 10.8 to 21.0 months
- EMA advice consistent with feedback received from FDA paving the way for a global phase 3 study
CALGARY and SAN DIEGO, CA, Dec. 5, 2017 /CNW/ - Oncolytics Biotech® Inc. (TSX: ONC) (OTCQX: ONCYF) (Oncolytics or the Company), a biotech company developing REOLYSIN®, also known as pelareorep, an intravenously delivered immuno-oncolytic virus that activates the innate and adaptive immune systems to turn 'cold' tumors 'hot', today announced that the company has received a favorable Final Advice Letter from the European Medicines Agency (EMA). The Letter refers to the proposed use of pelareorep in combination with paclitaxel, for the treatment of hormone receptor positive, HER2 receptor negative (HR+/HER2-) metastatic breast cancer patients in a pivotal phase 3 registration study and suggests that a single 400-patient study may be acceptable to form the basis of a Marketing Authorization Application (MAA) in Europe.
"The EMA's feedback and Final Advice Letter are very much inline with the feedback and advice we received from the FDA in September and adds to the support we have for our proposed target patient population of HR positive/HER2 negative metastatic breast cancer patients for the registration study," said Dr. Matt Coffey, President and CEO of Oncolytics Biotech. "Our statistically significant and clinically compelling overall survival data, Fast Track designation and clear guidance from the FDA and EMA allow us to focus on the completion of the adaptive study design that will include approximately four hundred patients with a pre-determined interim analysis at two hundred patients. Furthermore, the EMA provided guidance that if the study achieves its primary endpoint, it may form the basis of a Marketing Authorization Application for commercialization in Europe. The design of the study, feedback from both the FDA and EMA and our recently announced partnership with Adlai Nortye will also drive our ongoing partnering process."
Oncolytics' proposed target population for its phase 3 study of pelareorep is patients with HR+/HER2- mBC, which represents approximately 73 percent of metastatic breast cancer cases that have limited treatment options that offer survival benefit. Details of the pivotal phase 3 registration study will be made available following evaluation and completion of discussions with clinical advisors and potentially partners.
About Metastatic Breast Cancer
Metastatic breast cancer, also known as advanced or Stage 4 breast cancer, has spread to other parts of the body. Most commonly the lungs, liver, bones or brain. The disease affects over 154,000 women in the United States and according to the American Cancer Society, has a five-year survival rate of just 22 percent. Significantly lower than stage 3, with a five-year relative survival rate of 72 percent and stage 2, with a five-year survival rate over 90 percent.About REOLYSIN/Pelareorep
REOLYSIN, also known as pelareorep, is a non-pathogenic, proprietary isolate of the unmodified reovirus: a first-in-class intravenously delivered immuno-oncolytic virus for the treatment of solid tumors and hematological malignancies. The compound induces selective tumor lysis and promotes an inflamed tumor phenotype through innate and adaptive immune responses to treat a variety of cancers.About Oncolytics Biotech Inc.
Oncolytics is a biotechnology company developing REOLYSIN, also known as pelareorep, an intravenously delivered immuno-oncolytic virus. The compound induces selective tumor lysis and promotes an inflamed tumor phenotype – turning 'cold' tumors 'hot' – through innate and adaptive immune responses to treat a variety of cancers. Oncolytics' clinical development program emphasizes three pillars: chemotherapy combinations to trigger selective tumor lysis; immuno-therapy combinations to produce adaptive immune responses; and immune modulator (IMiD) combinations to facilitate innate immune responses. Oncolytics is currently planning its first registration study in metastatic breast cancer, as well as studies in combination with checkpoint inhibitors and targeted and IMiD therapies in solid and hematological malignancies. For further information about Oncolytics, please visit: www.oncolyticsbiotech.com.This press release contains forward-looking statements, within the meaning of Section 21E of the Securities Exchange Act of 1934, as amended and forward-looking information under applicable Canadian securities laws (such forward-looking statements and forward-looking information are collectively referred to herein as "forward-looking statements"). Forward-looking statements, including the Company's belief as to the potential of REOLYSIN® as a cancer therapeutic; the Corporation's proposed use of REOLYSIN in combination with paclitaxel, for the treatment of hormone receptor positive, HER2 receptor negative (HR+/HER2-) metastatic breast cancer (mBC) patients in a phase 3 registration study; the potential basis for a marketing authorization application (MAA) in Europe; the Corporation's proposed target patient population of HR positive/HER2 negative metastatic breast cancer patients for the registration study; the proposed characteristics for an adaptive study design; the Corporation's plans for future partnering arrangements; the timing of release of details of the Corporation's proposed phase 3 registration study; the Company's plans regarding its first registration study in metastatic breast cancer and studies in combination with checkpoint inhibitors and IMiD therapies in solid and hematological malignancies; and other statements related to anticipated developments in the Company's business and technologies involve known and unknown risks and uncertainties, which could cause the Company's actual results to differ materially from those in the forward-looking statements. Such risks and uncertainties include, among others, the availability of funds and resources to pursue research and development projects, the efficacy of REOLYSIN as a cancer treatment, the success and timely completion of clinical studies and trials, the Company's ability to successfully commercialize REOLYSIN, uncertainties related to the research and development of pharmaceuticals, uncertainties related to the regulatory process and general changes to the economic environment. Investors should consult the Company's quarterly and annual filings with the Canadian and U.S. securities commissions for additional information on risks and uncertainties relating to the forward-looking statements. Investors are cautioned against placing undue reliance on forward-looking statements. The Company does not undertake to update these forward-looking statements, except as required by applicable laws.
SOURCE Oncolytics Biotech Inc.
For further information: Investor Relations & Company Contact: Michael Moore, Vice President, Investor Relations & Corporate Communications, 858-886-7813, mmoore@oncolytics.ca; Media Contact: Mark Corbae, Canale Communications, 619-849-5375, mark@canalecomm.com
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Thanks Lucia. The oncolytics trials (treatment of cancer with an engineered virus) are very important to watch. The side effects tend to be limited to a mild flu, consistent with an immune response. IOW easy on the body. With breast cancer, they seem to focus on ERPR+ HER2- and p53 mutations but technically I believe the reason is marketing and strategy. t ERPR+ is the largest subset/market and p53 mutations lead to aggressive cancer so when the drug is effective it make their outcomes look good. The drug is widely deployed against melanoma and pancreatic cancer and the bugs should be equally effective against TNBC and Triple positives.
The Reolysin MBC trials haven't moved forward in the US as they should have but Canadians .... you need to be vigilant for trials and opportunities to get this drug. (Compassionate use?) I suspect you Canadians will have access before we do.
IMO, the "cure" is going to come from integrated multi-disciplinary oncolytics and/or immunotherapy strategies. And "cure" will mean long periods of remission with periodic re-treatment. And that's okay because the treatments are not toxic.
Watch the oncolytics trials ladies ...
>Z<
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z - are you suggesting these studies will open up for ER- folks? Sounds fascinating and will keep watching.
Lisbet I have no advice but am sure someone will chime in. Warm thoughts for all of us her
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Z I don't post an awful lot here because you all are so wonderfully smart and I just have nothing to add. Z your onc is going to have to start paying you😳. I wish all you ladies a lovely day
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Wendy3, I know how you feel. I don’t feel smart enough to say anything but I’ve just been denied insurance coverage for my trial. I’m so sick of this shit. So after 5 weeks of nothing, I will start gem/Carbo on Thursday. Some good news. Brain MRI was clear. I’m only 8 months into this and I’m on my third chemo. TNBC is a bitch
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insurance coverage for a trial? Can you walk me through the issue? Insurance pays for scans and certain diagnostics during trials... But nothin else. Why would they deny?
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live big ... Yes oncolytics for MBC coming your way soon. Doubled overall survival in a trial when combined with paclitaxel in heavily pre-treated population. 20 months vs 10 months. Canadian trial of course.
Z
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Thanks to everyone for the kind words! I feel better hearing from other people in my situation and that are surviving! I will continue to visit this site for advice and encouragement.
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Mrs ALG
6.5 years with MBC and still going strong.
Don’t look at old stats. We are creating the new ones.
Stefanie
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The company sponsoring the trial drug will not pay for the gem/carbo part of the trial. My insurance won’t pay either because the sponsor’s drug is not FDA approved. That’s the answer I received from Texas Oncology and my insurance company.
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Lisbet, I have very aggressive liver mets and had them under excellent control for 2 years. Can't say I'm in control territory at the moment but I do believe I will get there again...hopefully soon. I am not so very comfortable these days either. Keep watch of your symptoms and let your onc know if you feel significantly worse. Perhaps scans can be done early if so.
Kaylynne, yay for your brain! However, I too am befuddled by your insurance issue. That makes no sense. I didn't think that was possible. Gem/carbo is my bff. I miss it. Let it work amazingly well for you.
Erubulin and pembro makes me so tired. But, liver numbers, while climbing didn't go nuts so we press on. Please just work already. Going to Sarah Cannon beginning of new year for IMMU132 trial evaluation. Still hope not to need it for a while but things should time out well if I do. Sure hope I can land the trial drug side of the coin. Wish, wish, pray, pray. Trying to set up consult with Vanderbilt while I'm down there too but no call returned today. Maybe tomorrow.
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Lisbet, I have had no liver pain. The only way I know the Taxol is working is because the scans show a decrease in the size of the tumors and because my TMs continue to fall. My last scan showed only one tumor decreasing in size with the others stable. TMs seem to be leveling off also. This is month nine on Taxol for me. Not sure how aggressive my mets are but TMs went up about 10% in two weeks before I started chemo.
My thoughts are with all of you.
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I had genetic testing done on liver mets about 6 weeks apart. It is unusual to have two biopsies of the same organ that close together and send them for genetic testing ... and it's very interesting to look at the difference in the results. They biopsied different liver lesions. I had immunotherapy between biopsies. But still the differences were dramatic.
The first report from Foundation one shows the FGFR pathway is amplified big time. Amplification of the FGFR pathway implies hormone resistance AND resistance to CDK4/6 inhibitors like ibrance and abemaciclib.
More recent biopsy shows higher tumor mutation burden (TMB), but fewer mutations that could matter. The Caris report shows no amplification of the FGFR pathway which puts hormone suppression and CDK 4/6 inhibitors back on the table. If you believe the data, my cancer de-mutated into a significantly less aggressive cancer in 6 weeks.
Still trying to make sense of this. One likely cause is simply tumor heterogeneity. The genetic variability between tumors and within tumors makes using these genetic test results for treatment decisions a crapshoot. The promise of precision medicine is increasingly lost on me. We typically don't see a strong correlation between gene alterations and the performance of targeted therapies and one of the reasons, IMO, is that we don't have the tools to determine what mutations are driving tumor growth.
This is interesting if not actionable, but I did the test for the immuno-histochemistry. Immuno-histochemistry not shown in this table. Will post that in a few days after I make sense of it.
>Z<
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Lucia- Thanks for the info- I had no idea the oncolytic viruses were this far along in development! Surely 2018 will be an eventful year for cancer therapies! And yes, its time for treatments to move into years, not months, and once MBC becomes a truly chronic condition, then we will start seeing real cures. Step at a time, but hopefully we can soon can afford to ditch the really bad SE drugs and the relatively ineffective therapies
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Hi Zar- Can you say useless?! Wow, those are some variable results. No wonder that so many MOs have been saying that the genetic testing isn't often suggesting new treatments. And even if the tests agreed on a mutation, it doesn't mean that mutation or amplification is what is driving the growth of the cancer, there are lots of oncogenes, and they can be amplified, mutated, or the protein products can be modified or regulated in many ways differently from the mRNAs anyway so you'd want proteomics in addition to the genomics. Easier to just try something and see. It's always been a crapshoot, we just need more rapid and sensitive ways to see if the drugs are working, and for how long. For me, I'd want to try some kind of Abemaciclib combo, with Keytruda in that trial or with faslodex and Keytruda, because I wouldn't want to give up anti-hormonals until I knew I had to, and certainly not based on possible alterations of FGF signaling...
The recent Nature papers showed that Ibrance/Abemaciclib lower levels of PDL-1 protein- What happens is that CDK4/6 proteins are needed to make PDL-1 stable, and when inhibited the PDL-1 levels drop because the protein gets degraded. Therefore, Ibrance/Abemaciclib should work synergistically with checkpoint inhibitors (monoclonal antibodies like Keytruda or Atezo) because the former lower the level of PDL-1 and then the antibodies can more effectively inhibit what's left. And that just how it works in pre-clinical studies, but we'll have to wait and see if it works in human trials or whether breast cancers are too 'cold' and need something qualitatively different to make them 'hot'
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Kaayborg, will you be going to the Sarah Cannon in Nashville, TN?
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Thanks Cure-ious. I have decided to dream big and believe that my cancer de-mutated into a form that will respond to abemaciclib and hormonals. IOW, use the November Caris test to inform my treatment. Why not? Puts a kick in my step. It is also possible the adoptive cell therapy selectively attacked the more aggressive mutation, leaving me with cancer that will respond to CDK 4/6 inhibition. We can hope, no? Or I can just ditch the reports ... but that would lead me to try hormonals and CDK 4/6 inhibition anyway. It was the logical next step. Caris does tell me I am ER+PR-HER2-, no ESR1 mutations as before.
Neither Caris nor F1 reported PDL-1 expression, so maybe the cancer really doesn't express PDL-1. However, I am going to get radiation to the sternum in January. Radiation commonly promotes PDL-1 expression. Also, the correlation between PDL-1 expression and the efficacy of PDL inhibitors is surprisingly weak (see above). Keytruda is on the table at least in conjunction with radiation. It's interesting to know that if I can't convince insurance to give me Keytruda that abemaciclib has a similar effect. Thanks for you thoughtful response ... keeps me moving towards Abemaciclib.
The truth is that I am off all treatment right now and I am feeling normal and I like it. I am dragging my feet with the treatment decision. I don't want to deal with the side effects of standard of care treatment. I also have reasonable doubts about the efficacy of the standard of care ... whether they help more than they hurt. This is compounded by the fact that I suffered through the side effects of Ibrance and letrozol all summer even though they weren't doing anything. I will make a decision soon but it will be a thoughtful decision.
In the meantime, I am doing my Alpha Lipoic Acid IVs. I have a hunch that ALA controlled the development of the liver mets this summer. We'll see.
>Z<
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That's what I was wondering Zarovka. You had immunotherapy in between tests. I understand about the difference in testing tumors, places in the tumors etc. And I understand genetic testing is far, far from an exact science. Far enough really to be no science. But you did have treatment between the tests. I'm glad you're going with that interpretation and have decided upon a treatment going forward. Please keep us updated. I know you will!!
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Kaylynne, did you receive a denial letter from the insurance company yet? I would be curious to know why they denied an FDA approved drug combo for a MCB patient. That denial letter must contain what "criteria" was used to determine the denial. Once you have that you can often find the criteria information on the insurance companies web site under the "Provider" link. The insurance company denial letter is also required to contain information as to how you can obtain the criteria. It should not have mattered or concerned them as to the trial part of the request. I would be extremely curious as to how the request for that drug combo was submitted to the insurance company. None the less, your MO should be doing a "peer-to-peer" with the medical director who denied the drug request.
Please let us know what you find out.
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Hello everyone! I feel a little sheepish after such a long absence. I have been a "lurker", but have felt every bit of joy, pain and frustration with all of you.
Anyway, I'm back. I am intensely concerned for Lita and Dani. Also, don't see DianaRose posting.....
I failed Ibrance/letrozole after 15 or 16 cycles. I have recently started Fulvestrant. Too early to know anything. progression is in liver, multiple bone mets are stable. Tumor markers went a little nuts. Radiologist read recent PET scan as mostly stable with a couple shadows that MIGHT indicate liver issues. Well, my MO read the scan himself and absolutely did not agree. He showed me the two bright yellow areas visible in one "slice" of the liver, clearly showing progression. He is open to the possibility of putting Ibrance or Abemaciclib back in the mix later, but believes we made the correct decision with the fulvestrant as a monotherapy. I have right lower quadrant discomfort, not awful, but gets my attention.
Yeah, I went through the process of feeling one step closer to the grim reaper, and shed more than a few tears, but I'm adjusting with frequent periods of optimism. If one can literally "live in the moment", MBC can't touch you. Wish I could achieve that, but some of the time will have to do.
My original liver biopsy is currently undergoing genomic testing at Jackson Labs here in Maine. it's free to anyone in Maine. The data will be in an international data base and any new developments in the future will be "matched" with any mutations ones' tumor might exhibit. The trial also exists to teach MOs how to interpret the reams of info obtained. My MO is the principal investigator for my clinic.
So, know that I love each and every one of you, my amazing MBC sisters! I am in your corner 100%. May the force be with you each and every day!(thanks for the sweet note SP!) Love MJH
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Z, Cure-ious and everyone else, I stumbled on this, not sure if it's going anywhere soon but an interesting idea in at least a sci-fi way. This one is in Montreal but it's reportedly being explored elsewhere too.
'A lot of promise' for nanorobots to treat breast cancer, says Montreal doctor
Breast cancer conference in Montreal addresses scientific advancements, support for patients
CBC News Posted: Jun 04, 2017 5:00 PM ET Last Updated: Jun 04, 2017 5:00 PM ET
Cancer patients in Montreal could be the cusp of being treated with nanorobots thanks to revolutionary technology being developed at the Jewish General Hospital.
The experimental treatment sees scientists create bacteria that behaves like a tiny robot carrying chemotherapy drugs to cancerous tumors in the body
These bacteria-based nanorobots can be guided with magnets — they have microscopic metallic crystals — but also zero-in on tumours autonomously by being drawn to low-oxygen areas.
This form of treatment means patients would be spared more invasive and aggressive cancer treatments such as radiation therapy.
- "You have to inject millions of them in order to see it on imaging, so that's how small it is," Dr. Té Vuong said of the nanorobots."The advantage of being very small is that they can penetrate the tumour very easily, without any barrier."Vuong, the director of the Segal Cancer Centre's Radiation Oncology facility at the Jewish General Hospital, said her team's research is leading the rest of the world."We're very excited because there is a lot of promise for our patients and this will allow us to move to a new generation of treatment for cancer," she said.
The team's efforts were presented in Montreal on Saturday during a scientific forum organized by Quebec's Breast Cancer Foundation.
While Vuong's team has had success in their trials with rats and mice, they are waiting for approval from Health Canada and the funding they need to move forward.
Vuong hopes they could begin clinical trials on humans in the next 18 months.
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I must say I feel so inadequate at times. You all know so much and do soooo much research!
Due to my liver progression- mets larger and more of them my MO has me meeting with the IR next week. I’m not even sure what I should be asking?!?!
Thank you all!
Babs
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Do you think that liquid biopsies should be used more, in order to get around the problem of tumor heterogeneity? I mean, I assume what is in the blood is a "mix" from all the tumors. The test also gives a percentage for each alteration found, so you could address the most prominent one(s).
Babs, maybe just make sure the IR understands the details of your case, then simply listen to his/her thoughts and recommendations.
Stefajoy, I love what you said about stats: "We are creating new ones."
Lisbet, it is sometimes hard to know if liver pain is from progression or from cancer cells dying. I've had both. Let's hope your January scan shows the latter!
Hey, you guys. Please don't question if you are smart enough. We are all together in this. Just be here with us all as long as it is a good thing for you. Everyone has something to contribute. Even if you are not into research you are still supporting your sisters here.Hi, MJH!
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