How are people with liver mets doing?
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Celebrate Life - Can you tell me where you get treated and what your ERPR and HER2 status is? Feel free to PM me if you like.
The site allows you to fill out your diagnosis and treatment history in your profile. Then if you go to settings and make that information public we can see it. Helps everyone understand what you say and your questions in the context of your specific diagnosis and history.
JFK - thanks for taking time to write that. Reading and reviewing.
>Z<
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Yes, Celebrate Life- you are having CAR-T done? Please give more info, esp if you are ER-positive HER2-negative or not, and where you are having this done, which trial is this? exciting!
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CAR-T and breast cancer, pre-clincial results:
https://www.livescience.com/62161-cancer-vaccine-t...
Keeping an eye out for results in the Abemaciclib plus Keytruda clinical trial (JPCE), here is more pre-clinical evidence:
https://www.ncbi.nlm.nih.gov/pubmed/29539425
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Hello everyone. We all have so much going on and I want each of you to know that although I may not respond to you individually, it isn't because I don't care. I think of our group every day and pray for successes.
I'm coming up on a year since my original diagnosis and not one single treatment has slowed this crap down. My onc tested for MSI, whatever that means, and I am not eligible for Keytruda which I think is the only immunotherapy option that is currently approved for breast cancer if the MSI is high enough. Mine was negative. I will find out on April 16th if Xeloda has made any progress. So if it hasn't, what do I do next? I mentioned Y90 to my onc and she had no idea what I was talking about. She just said radiation isn't approved for my type of cancer. You know, I am just really sick of all of this. Sick of nothing working, sick of people telling me I can heal myself if I only believe, sick of staying positive, sick of not knowing when not if I will die. I have been "so brave" to this point, keeping a stiff upper lip for the most part and kind of in a semi state of denial. One year later, I am scared shitless. I don't want to die. I'm not ready to leave my loved ones. I have things to do. I'm too damn young. I need hope but can't find any.
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Hi Kaylynne, I am so sad about your situation. From your posts I knowthat you are a very brave person who has try to stay positive through all of this .
I see a counselor at a local cancer support center who counsels metastatic breast cancer patients. Monday she told me about an organization that has helped some of her clients who have very aggressive cases. I just looked at the website and it may be something to check out. The website is www.askican.org. They do some personalized patient advocacy.
I’m getting ready to go to my appointment to get results from my scans and didn’t have much time to review site. But I want to send you information quickly after reading your post.
I’m thinking of you and wishing the best for your results from Xoleda.
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Liwi, I contacted them and I felt heard and truly acknowledged for the first time in a very long while. She is emailing me information on a trial and also some further testing that can be done. Thank you for taking the time to respond with this information and thank you for having my back. I've received more insight from this group than all my oncologists and nurses combined.
Much love,
Kay
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Grannax, can you discuss why Kaylynne's MO said no to Y90 for Br Ca liver mets? I am confused. Seems a radiation oncologist or interventional radiologist should be on board for those decisions?
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Kaylynn Sandi. I cannot imagine why an MO said she'd never heard of y90. Maybe you could see if there's an IR in Oklahoma City who specializes in radioembolization. Make an appointment with him for a consultation. Your mets. ,are only in the liver?
Y90 is not external radiation. It's performed sort of like an an angiogram. Y90 spheres are injected into the tumors. If not in OKC, I know one in Dallas. Dr Van Meter is the one who did mine. Google him. It would not be too far of a drive.💞
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I heard from Artist's daughter today. Artist, our dear friend, passed away on 3/19 from kidney and liver failure. Her family was with her, and she went peacefully. My heart aches for the loss of our kind, supportive sister who loved life. I have no more words right now.
Cancer sucks.
Hugs and prayers from, Lynne
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Oohh, I am so ill over Artist!!!! She deserved so much much better, better treatments, stronger drugs, and way more in the way of a responsive system of doctors and insurance agents!!! I see above that hers was the most recent post on the thread about finding clinical trials, and I am sick of how we are the ones who have to suss out something that might save our own lives, pushing back against everyone else who has basically given up on us!!!! May she rest in peace, a lovely caring lady who deserved so much more...
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KayLynne,
Your MO was testing you for microsattelite instability, a kind of DNA damage that is associated with a high response to immunotherapy as a single agent treatment. Its rare in MBC, so not a surprise it wasn't there, but was worth checking. However, this does NOT mean that you cannot benefit from immunotherapy, there is general agreement we just need to find what drugs it synergizes with and enhances the response, ie, makes treatment more robust and last longer.
You are triple-negative, so immunotherapy should be thrown into the mix, when you find what works, hopefully this Xeloda. I'll be back when I check some other possibles..
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Lynne,
Thank you for letting us know. I’m devastated. No words. Tears and prayers for her loved ones.
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holding artist close to my heart. She will be missed
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KayLynne
I think you have not yet tried had CDK4,6 inhibitors, like Ibrance or Abemaciclib. There is a clinical trial testing Abemaciclib with Keytruda, based on pre-clinical data that the cDK4,6 inhibitors will be boosted by immunotherapy drugs.
First, is to check if your cancer expresses retinoblastoma, and if so there is a trial for Abemaciclib in TNBC:
https://clinicaltrials.gov/ct2/show/NCT03130439
And also a trial of Abemaciclib with Keytruda added on, but only for ER-positive patients (arrgh!, who designs these trials?), but keep an eye out for a similar one or just ask your doc to give you Abemaciclib and Keytruda off-label:
https://clinicaltrials.gov/ct2/show/NCT03130439
Another class of drugs in development for TNBC as well as ER-positive breast cancers are the CDK7 inhibitors, with a couple of phase I trials are in progress- so its a bit early, but keep these drugs in mind, because the pre-clinical data looked good and looked like it worked on resistance cancers too
https://www.businesswire.com/news/home/20170515005...
http://www.carricktherapeutics.com/carrick-therape...
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And if Halaven works, there is a trial adding on keytruda:
https://www.prnewswire.com/news-releases/encouragi...
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I'm devastated about Artist. Artist I am thinking about you and your family today.
Please everyone take care ... I do think this disease will become manageable in the next few years. STAY IN IT in honor of all the wonderful women we've lost. This is very hard.
>Z<
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i am shocked and devastated over Artist's passing.
We just never know how fast things can turn with this wretched disease.
She will be greatly missed.
L
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what a terrible week! I'm so sad to read about Artist. We have yet lost another sister! May She Rest In Peace, her suffering is over. My heartfelt condolences to her sister and the rest of her family.
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Cure-ious - Here is the CDK7 inhibitor trial you referenced. They are still at the first in human phase where you have to be out of other options, but if that's where you are, it's an interesting option. The trial has been running for a while and expects to report outcomes and move to phase II in 2018 if things go well, so we need to keep an eye on this.
SY-1365 is active in both ERPR+ and TNBC as is the other CDK7 inhibitor, CT7001. SY-1365's "story" focuses on TNBC but it is active in both ERPR+ and TNBC cancers. The other CDK7 inhibitor (CT7001) is also active in both ERPR+/- and they include ERPR+ cancer in their story but they are only running trials in England right now.
A Phase 1 Study of SY-1365 in Adult Patients With Advanced Solid Tumors
I do think this is a drug that could bridge many of us to the managed cancer regime we need to get to. Keep an eye on it.
>Z<
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I am devastated to learn about Artist although after such a long silence, I knew in my heart what happened. She was diagnosed after me and we were on first line Ibrance at the same time as well as other drugs. The one month delay due to someone dropping the ball on the COBRA side is just inexcusable. I wonder if that lazy soul who couldn't bring him/herself to his his/her job realizes he/she may have taken a life in the process. Artist is such a sweet, kind person. It feels so wrong that she is gone.
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Hello Ladies,
I am sorry to have to tell you that yesterday , i received a pm from artistaheart daughter. She passed away on Monday 3/19 , from kidney and lover failure. She was surrounded by her family and loved ones.
My sincere condolences to the bco community and all those who knew her. I hope she is in a better place free of all pains.
I am sorry we all have to deal with this dreadful disease and my prayers are with each and everyone of you.
Be well hugs to all
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Contrary to the direction of our prevailing current treatments, my gut tells me that breast cancer (and all other cancers) are caused by viruses that negatively affect our immune system (primarily the major one in our gut), as just about everything we consume today is in various degrees carcinogenic. Yesterday, coffee was added to that list—but they knew it was a huge problem 10 years ago.
Over time, depending on our exposure and personal vulnerabilities, these viruses, indigenous to the human body, change our DNA and affect our immune system's ability to recognize the problem, since in a balanced gut these creatures serve a very good purpose.
Finding a vaccine, in my humble opinion, is the way to go...and this morning I read this interesting article on the subject. Amazing results are coming out of Stanford University. Experiments conducted on mice with a vaccine caused 97% of ALL CANCERS TO BE DESTROYED!
When they start experimenting on people, I will be the first to enroll...for me this is the way to go....
Let's use the therapies available to stay alive as long as possible, hopefully, we will get to finally experience real progress being made against this terrible disease...
We can do it!
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So saddened to learn that Artist has passed...and angry that the system failed her on many fronts. She was a light here on the boards and truly was lost before her time. Thinking of you all! I follow friends here and wish you the best options, doctors and treatments!!
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Lynn and Woodylb - thanks for the update on Artist/Kathleen. Like JFL, somehow I just knew that she had gone. It went really fast. The insurance system had her begging for meds. No words.
Z - you are in my thoughts daily. Have you decided on which taxane cocktail you will start with and when? I'm still a fan of A-train, but taxotere has good results too.
JFL - please keep us posted on Doxil details. It's on my future list. I restart Madame X next week - getting new bloodwork for TM baseline on Monday.
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Thanks LALady. There are two outstanding questions ... systemic therapy vs TACE and the which systemic therapy. I've been studying taxane therapies. It's interesting how unclear the data is on the factors I care about: efficacy and how well it complements immunotherapy. I'm going to go with whatever MO says. This is not issue to push because I don't see a clear winner. The key is to keep the dose low and that is his plan.
I don't expect to hear from him until Monday. He is the director of the cancer center and works half time. It's stressful waiting of course. I am in more stress when I am symptomatic and feels like things are getting worse. My liver is huge and extends almost to my hip bone according to the doctor. So there is some pain and a lot of gastric issues I guess as the liver presses into the digestive system.
The day you called I had worked two full days after driving 100 miles on Monday to meet with my onc and get a huge wack in the head regarding treatment options. The stress got to me and the liver pain got worse. That generated more stress ...
I rested all yesterday and today will be light as well. I've been taking cannabis oil at night which aids sleep, manages pain and is a kick ass anti-inflammatory agent. Should be able to make it to Monday.
>Z<
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It is just devastating to hear of the loss of Artist. I kept hoping for the best but was so worried when we did not hear from her. The losses just keep piling up.
Like Zarovka said we have to keep going forward. We have to do it for ourselves and those we have lost.
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Miaomix - That is very interesting research. The Stanford team is injecting CpG oligonucleotides to increase OX40 expression on cancer cells and OX40 antibodies to bring them to the attention of the immune system. Neither is a vaccine in the sense we usually use the term. The combination does trigger an immune response against these non-self cancer cells, but in this case the target is the cancer cell not a virus.
The good news here is that neither of these agents is first in human. We can expect that line of research to advance (relatively) quickly to trials we can participate in. Definitely on my radar.
>Z<
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I am saddened to hear about artist. She was such a sweet beautiful soul and will be missed. Prayers going out to Artist and her family and friends.
Robin
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Oh, what terrible news. Artist, how missed you are. Rest in peace and in the beauty of a place far better than here. Please stupid cancer be gone from us. You are so evil to take so many precious lives. Why, why, why????
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Another punch in the gut losing Artistatheart. I'm devastated. No words right now.
Thank you 50sgirl for letting us know.
We are losing so many metsters lately and so many new ones have joined us that I cannot keep up with everyone. That is a sad state of affairs. Cancer sucks.
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