How are people with liver mets doing?
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Z your great news just made my day!!!! You are one amazing lady. You’re always a wealth of knowledge for us all so hearing that all your endeavors paid off fills me with great joy!
Lisa I’ve had a few liver biopsies. No issues no problems. All went well. Sure yours will be the same
Babs
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Z- amazing results. I might stay on A-train just a little longer to make sure the critters are dead and not sleeping. So exciting!!!
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Lalady1 - I got another couple rounds of Abraxane to do, for sure.
Neurologist can't rule out out BC metastasis to brain from brain MRI. The lesion looks mostly like meningioma (benign) but it has this little horn that is more typical of breast cancer metastasis. Also I have some neural symptoms that might point to metastasis to the brain in another area where there is no visible lesion. Given the aggressiveness of the cancer, they are concerned about what they can't see. Breast cancer floats around in fluid in a way that MRI can't pick up.
Something like that. Too tired to become an expert on brain lesions and I don't feel like I have to. I am being treated by possibly the best neuro-oncology group in the country. Such a relief to get out of NM to a hospital where I don't have to be my own doctor.
Staying in Rochester till next week to get spine MRI. If the breast cancer has metastasized to the spinal and brain fluid, we may see tumors in the spinal fluid. Little tumors floating in the fluid, I guess? If the spinal fluid is clear on the MRI, then they will do a spinal tap to look for single floating cells in the fluid ... Neurologist seems to feel that will give us a definitive read on the whole brain situation, both the meningioma-like thing and the possible invisible brain mets.
If you had told me a year ago I was going to get a spinal tap I would have passed out on the spot. Now it's like, yeah sure. You want to do it now?
Hanging out in Rochester, missing the soccer team Tye Die Rumpus and Barbecue (which I organized) and a weekend with my family. But I am so tired. Kinda welcome the alone time.
Thank you all for your support and generally having the appropriate response on the liver victory. Not sure why I am not bouncing of the walls at the news. Strange emotions.
>Z<
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Everyone here inspires me to put my best foot forward everyday. Thanks so much!
Miaomix - Please keep sharing your wonderful recipes! I am attempting to eat very healthy, but I need to get more creative about my recipes like you do.
~Kari
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Z!!!!! Turnaround SO quickly, I'll bet anything it was your diligence in fasting, which gave you the equivalent of a much higher dose of chemo and cleared it out way faster as well!
Why not continue to clear cells out a bit longer (the bits that don't show up on scans) until you hear what is up with Abemaciclib-Keytruda or any of the other ongoing trials? We are due an update soon surely, its already May!!!
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Oh Cure-ious. Thank you for the energy. Keep the ideas coming. And when the awesome Abemaciclib Keytruda trial results come in, beat me over the head with them. Especially if I end up with brain metastasis.
Mild depression, or maybe a fever, setting in. Back on the saddle soon, ladies but for now, Oy. How weird. I am trapped in Minnesota with nothing to do for two days and I am glad about it.
>Z<
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Z-joining the others in saying how thrilled I am for you. When one of us has good news, it lifts us all!
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Great liver news Z! I want all those Mets blasted outta there for you. Enjoy your quiet time in Rochester
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I'm also waiting on the Abemaciclib Keytruda trial preliminary results too. I had to move treatment home to CO after yet another progression. Onc at MD Anderson wanted to start on weekly chemo and I could no longer travel. Onc at Univ of Colorado put me on Aromasin/Afinitor pending Foundation 1(finally) and is quite interested in the Abemaciclib Keytruda trial at CU depending on Foundation 1. I sure would love to have something work. It's been a long year of continued bad news. 3 different treatments in one year. Sigh.
Z your news gave me hope which was surely needed. I'm continuing to cheer from Denver!
Mary
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Lalady congratulations on your new job!
Z that’s great news on your liver scan results and I’m hoping for equally good news from the results of your spine MRI and possspinal tap (which sounds really scary to me). In the meantime try to enjoy and soak in energy from your alone time.
Lisa I am a total medical procedure whimp and found the liver biopsy a pretty easy procedure. They gave me some kind of fast acting medicine to relax and a pain med immediately prior to the procedure. Whatever it was felt pretty good.
Marylark wishing you success with your new treatment. You are due a break. I’ll also be interested in what happens with the Keytruda trial at CU.
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Z, awesome, awesome news about your PET! That is exactly why I have grown to appreciate how powerful chemos can be, especially for those of us with aggressive mets. For what it is worth, staying on long-term, low dose Abraxane would be my recommendation. When you find something that works, hang on tight for as long as you can. I did take Abraxane every three weeks which made it a more doable schedule with my day-to-day life. 3 weeks seemed so long in between treatments, it was great. However, my tradeoff was higher toxicity given the higher dose.
LA, OMG, you landed the job! Congratulations!!! I am so happy for you and proud of you. Sounds like a really good situation professionally, lifestyle-wise and insurance-wise. Tailoring is the best for a working professional Stage 4 woman grappling with unintended weight loss. I have had so many items of clothing tailored in the last year due to my treatment-related weight loss and have another stack I need to take to have altered this weekend.
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Zarovka, I am so happy for your PET results. I wish you all the other issues will get soonly solved and properly treated with the same great results. You are such a pioneer in MBC treatment. I dowloaded V. Longo book, I have read so much about different ways of nutrition but this one is the similar I tried to implement since my first stage dg.
I have question please, I have read that someone here had startes Ibrance after the liver met ablation. Is it use also as a kind of adjuvant drug, even when the patient is currently Ned? My doctor says no, I had single met resection in november and still taking only exemestan. I had hypertermia and opdivo as experiment. This doctor suggested optivo as adjuvant for a year every month.
ALso someone suggested peptidic vaccine made directly from the tumor. Do you have any info about that?
Thank
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Confession that I did have to stop reading your posts. Everytime I read through them I end up too tired to post my own update and I know some have been asking. I am in my final few months of life and it is hard to know exactly what to do with the time. Still planning to try last ditch effort chemo but it seems quite clear these nasty cells know how to get around it fast. It was only my dear gem/carbo that ever worked for me.
Not sure how much I'll post in the future but my DH knows to update you. You all have been an incredible blessing to me. Keep up this awesome community that sustains us all.
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Kaayborg- Sending gentle hugs. I’ll be thinking of you and hoping the new treatment will renew your energy and spirit.
LAlady- congratulations on the new job! You will be the best thing that has happened to them
Maaki - no answers but I’m sure someone else will have good information for you.
Liwi- Glad the test went well for you.
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kasyborg- hugs and many prayers.
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kaaborg - my eyes well up as I read your post. I have no advice but send you love and gentle hugs. Hoping that you will be posting again soon with good news
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Kaayborg, is the medical community telling you about the three months? It just seems you started brain radiation. I hate to see you losing hope, you sound so sad and tired. Post when you can. Just know we all care about you.
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Kaayborg, I have been praying for you every morning and every night. I logged on just now to see if you had posted again. I have been so concerned about your status.
My excitement of seeing that you had posted again immediately disappeared when I read your post. Doubling up on my prayers for you. 🙏🙏🙏🙏
My prayers continue for all of my sisters and brothers on BCO every day.
Louis
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Kaayborg, I am lifting you up in prayer. I hope that the new round of chemo somehow outwits those nasty cells. You are an important and supportive presence on these boards, but we understand that it is difficult for you to post right now. Spend your time just being yourself - enjoying time with your family, making memories, and feeling the love all around you. Thank you for taking the time to give us an update.
Hugs and prayers from, Lynne
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Marylark - Denver may be the closest site for me for the abemaciclib/keytruda trial. Interested in your process. We have an Abemaciclib thread where that discussion would be read by many.
JFl - Thanks for good wishes and advice. You are a smart lady getting excellent care. I watch your treatment decisions closely. I appreciate this post and every post.
Maaaki - Much of Longo's approach is similar to most of the better researched cancer nutrition like Anti-Cancer a New Way of Life by Servan Shreiber. The fasting is a less common element, but nutritional principles align and some of his research and references are fresher. I've found it worth reading. He's given me some ideas I felt were worth implementing.
Cancer vaccines abound. They are not vaccines as we normally think of them but they prime the immune system to see the cancer or prime it to attack. I have had dendritic cell vaccine twice now. My immune system most likely has the ability to see and attack my cancer right now. My current goal is to give it an opportunity to attack.
The problem with MBC is that it is good at setting up a strong defense against the immune system. Alerting the immune system to the cancer is not enough, you need a strategy to suppress immune suppression. (I have not yet figured out a way around that double negative). This is a very complicated business.
In general, it is worth pushing for immunotherapies like vaccines early and often as they are complementary with the standard of care, endure in your system for a while and may kick in at some point. It's opportunistic and random whether and when they work. That may always be the case given the complexity of the immune system. Certainly worth pulling the string on trials available in your region.
IMO, vaccines are a long shot for ERPR+ HER2- cancer. Yes I did it, but no I don't think odds are high. Viral therapies top immunotherapy list as far as risk/reward go, and also as far as treatments in trials in the US go. The trials are doing well and I'll think we'll have more opportunities to access these treatments over the next year.
Kaayborg - So happy to hear from you. I am just emerging from facing my own mortality head on. I don't have all the risk factors that you do but it has been exhausting and the emotions and stress are terrible. I wasn't much into posting either until things resolved a bit. It was hard to talk about what was going on, but I tried to get on a post something almost content free to stay connected.
My point is that it is okay to say hello without talking about what is going on. It's also okay to check out, but we do think of you whatever you choose.
Finally, we're all at risk. We all need to be ready to face the final months. But once that is covered, don't buy into any timeline. Keep your mind on the horizon ... which is always a long way away.
With you wherever the road takes you ... looking forward to hearing about a major turn around.
Thanks everyone, again, for your support.
>Z<
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Z - so proud of you and your decision to be treated at Mayo. When I had my dura met they radiated a swath of my head for 3 weeks. It killed the met and likely any strays that may have been floating around. That's very important as strays don't show up well on scans. The RO mapped a meridian for the machine to chug around which sounded like a lionel train clicking over my head. If you need rads or gamma knife - go for it. We are here for you when you return from NM. Kaay- sending only kind thoughts, was hoping you'd catch a break. I completed a will and trust 2 years ago (happy that is done), and planned out a financial map for my family who I support. If they stick to it, the house will be paid off, and there is a 529 and tax money too, etc. I am now sorting out some clothes to give to women returning to the workforce. Ironically at the end of my career I need more casual clothes than the "dress for success" pant suits I overspent on. lol Kaption hope you are holding up today. Be kind to one another and support women!
(()) C
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Hi Claire. Glad you are sharing your clothes with those who need. Our needs certainly change.
I’ve been fighting this upper respiratory infection that has caused an ongoing fever. I’ve missed 2 Gemzar treatments and was told Thursday that if we couldn’t get the fever under control I’d have to check in the hospital for IV antibiotic. The problem is I’m allergic to so many antibiotics. So, essentially I’m taking one I’m allergic to, but with Claritin. Four doses so far. Temp is better and no allergic reaction so far. I see the ENT Monday.
Missing the beautiful weather we’re having.
Hugs and prayers to all.
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Hello! Just wondering if anyone here taking eliquis as a blood thinner?? I know a lot of MBC patients are prescribed blood thinners usually lovenox or cumidin
Fyi- that question is repeated on the Doxil threa
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Hi Nouzay, I am on Eliquis. I have a history of PE and DVT that pre-dates cancer, but tests haven’t shown any cause. After my most recent PE in 2016, my doctor said I’ll be on blood thinners forever. I take 5 mg twice a day.
I’ve been on coumadin, lovenox, and heparin in the past. For me, Eliquis is easy and I don’t have any side effects! Usually I stop two days taking it two days before any procedure, and then start up again following.
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Kaption - I hate fighting illnesses on top of cancer and it is scary that it is interfering with your treatment. I can only empathize and offer a hug. Wish I could stop the infection.
>Z<
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Thank you Jamiemarie for replying! I know eliquis is so convenient.. I love it compared to those painful lovenox shots! I didn’t have a history of dvt but having been diagnosed in pregnancy and then had to do a hip and femur surgery a couple of days after giving birth, I developed a blood clot and they switched me from a profilactic dose to a higher dose of lovenox for life!
The reason I’m asking is I’m wondering if it is interfering with my response to chemo and treatment in general.. my MO was very reluctant to let me take it due to lack of studies on drug interactions concerning Eliquis and cancer treatments in general but my best friend’s husband, an oncologist in a private practice setting, is the one who told me about it knowing how much I hated lovenox...
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Kaayborg - I am so saddened by your news. Wishing you the very best, and praying a new chemo kicks in to give you a new lease on life. Hugs to you
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kaayborg: sending prayers your way for healing, comfort and strength. Hoping your current treatment kicks in and knocks the cancer out.
Your TNBC sister
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kaayborg, my friend, I am still hopeful. I hear the tiredness in your voice and how I wish I could lift you up for a while. I understand feeling bone tired of it all. Even when things are going sort of okay for us, we are still climbing uphill nonstop just to stay alive and it gets hard, so hard. Gentle hugs for your tired body and spirit, sister.
I will pray extra for your comfort and for peace in your spirit. Your presence here has meant a lot to me and to so many others as well. I want to keep you here a whole lot longer but I also want you to enter into sweet rest and better times. I want that for all of us. Rest, friend.
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Kaayborg-
Praying for you to have courage, faith, strength, and hope in the days ahead. Virtual hug to you.
Z-
all I can say is you are awesome and an inspiration. Great job and enjoy the fruits of your labor. You go girl!
NouzayO-
I am on Xeralto after being on warfarin and developing a blood clot. I haven't checked into drug interactions and my MO prescribed it. Will check into interactions.
Spring has finally sprung! So enjoy and celebrate new life.
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