How are people with liver mets doing?
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The y90 club is growing. Yay us! Now we'll just have to wait awhile to see those good results.💞
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KC1010 - The only difference was the percentage of ER+....my liver tumors were much more Estrogen positive than all of the other biopsies. I'm not sure that this makes any difference in treatment, but it was good to know.
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Z—the MO gave me a list of chemotherapy agents to choose from during the last treatment change. I chose tamoxifen because it was still an hormonal, then she insisted I should take the afinitor with it because of the AKT...there aren't many personal actionable choices available to me other than chemotherapy and trials. The other was already played out when Faslodex and ibrance stopped working.
From the look on her face, I don't think the trials results are promising. Maybe they wouldn't be right for me.. I might be wrong, but she always presented that choice as something I should do down the line...later on. My situation will become clearer when I take the 7.5 mg, check onthe results and get to know my new MO. He is very active with all the trials.
His research focuses on circulating tumor DNA as a novel cancer biomarker and genomically driven translational research in breast cancer.
Whatever that means...sorry I didn't write that, just reporting his own description.
English is my second language....
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Miao - did you consider Arimidex? That worked well for me +Ibrance. I was given 10mg A-failitor +femara. yuck Watch for breathing issues. Trust your gut. Thrilled for all the ladies trying Y90.
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funny you should mention arimidex, LALady, I just wrote my MO and asked her if the increase in cancer markers especially in my CA125 couldn't be attributed to the cancerogenic nature of tamoxifen, well known to cause ovarian cancer. I'm waiting to hear what she has to say..
My cancer markers were steadily going up by 10 and 20points on Faslodex and ibrance and then suddenly doubled and tripled once I started tamoxifen and A-fakitor. And they haven't gone down much
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Miaomix - I am in the middle of negotiating my treatment with, yikes, 3 different oncologists at this point. Long story there, but the point is that I get where you are trying to navigate through these treatment decisions. There's what I think and then there is what they think and then there are certain facts and constraints of the facilities I can work with and the hospital system we have. Sending 100% support from scenic NM. Sounds like your new onc is top notch so the relationship is important to your long term care.
FWIW, here's my situation at the moment.
I got back from Japan planning to switch oncs and let a new guy guide treatment going forward. The new MO delayed my appointment by a week and a half after I got back. In the meantime, I met with IR who wanted to get me in immediately for local liver treatment (TACE, chemo embolization). I met new MO last Monday (a week and two days ago). MO challenged the TACE idea strongly. I proposed TACE, he proposed taxotere IV's. I asked him to call the IR. I suggested that this may not be his grandmother's chemo embolization. I like this MO. I can live with taxotere or some kind of taxol if that's his plan. Nonetheless, he's not the expert on TACE. I feel he needs to consult with the IR before ditching my request.
Well. I have not heard back from the MO in a week and a half (looking at business days). I've called his nurse navigator 3 times, but without a plan from the MO I cannot go forward on either taxotere IV's or the TACE or anything else. My liver hurts a little bit more every day and extends so far below my rib cage now that I can feel it as far down as the top of my right hip bone. I feel bloated and shaky. I've run out of cannabis, which I think was doing a world of good managing pain and inflammation of my liver.
As a separate effort, I have established myself as a patient with the local hospital and their oncologist in order to get whatever treatment my MO prescribes near where I live rather than 2 hours away at the facility where my new MO works. Historically, we've had a good hospital with a good infusion room and bad oncologists.
If I do get taxotere IV's (weekly, low dose, 12 weeks), it's better to get them 10 minutes from my house. I meet with local MO tomorrow not actually knowing what the treatment plan is ... TACE, Taxotere, TACE and Taxotere? The local MO knows my out of town MO. My hope is that local MO will make some phone calls and get to a solution tomorrow.
The good news is that, to my total surprise, the local MO changed on Monday of this week (yeah, yesterday, the day I walked in). And, to my TOTAL surprise, I like him. We've had a revolving door of second rate oncologists for two years and now, suddenly, we may have a good one.
So, yeah, Miaomix, we can all pitch you different ideas but we have our oncologists and our facility and transitions and all manner of logistics to deal with. When you have even a decent situation, the relationship is key. I just want to say that your posts are the posts of a smart lady with good instincts and I think you know what you need, but I also get what its like to deal with a particular situation. In the end, we can't write these orders for ourselves.
I am a wreck at the moment. The pain from the liver mets gets to my head, makes me feel beaten, as does the fact that I am shopping for chemo. And of course the fact that I don't have my treatment plan nailed down and my doctor is not responding has drained all my pluck and mental reserves. I am crying all the time. I am exhausted. I don't know if it is the mental piece or the liver mets sapping my energy.
Has anyone looked at fasting before chemo or exercising during chemo? I'll probably do one or the other. With weekly taxane, it seems a bit rough to attempt both.
>Z<
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Hi Miaomix,
Do you know if your Akt mutation is Akt 1? I have that mutation and I am on a clinical trial that targets that mutation. I take the trial drug MSC2363318A with tamoxifen. I just started my 6th cycle yesterday. I have a topic on this but I have been horrendously remiss in updating it. But it does have the trial information. I’m writing from my iPhone so I’m not able to insert the link right now. I’ll add the link when I can.
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Z— reading your update shocked me, I feel deeply saddened finding out what you're going through. I'm so sorry about the physical pain and psychological stress you're suffering. It's terrible and cruel for your MO to treat you this way.
I was in a similar predicament one year ago, before I changed hospitals. My first MO wouldn't answer my calls and I was without a plan or therapy a month. I know how you feel....it's a horrible limbo to be in.
I truly hope it falls into place for you now that you've met a local MO that you like and that's also good, I hope he can make that phone call and get a consensus so you can start working with him without delays on getting the taxotere and/or the TACE TX you want. That will give you time to find the right immunotherapy trial for you, if an alternative plan is needed later on.
My current MO and her team turned everything around for me, I'm positive it will happen to you as well. I'm sure you'll start to feel better and stronger at every level once you get the care you need.
I will be sending comforting and healing thoughts your way...
Regarding pain....couple things have worked for me in the past—apart from the Tylenol, the oxicodone, and the usual Advil which you shouldn't take—before they put me on 20 mg of fentanyl patch, I took6 capsules daily of omega 3 fatty acids by M.D. Perricone. ( these are the real thing) Taken two at the time with meals. They are very powerful anti inflammatories and they also protect the heart.
Specifically for the liver I would use a warmed up Castor Oil pack.
I know...I know...but they really work to remove toxins out of the body, and there's something very comforting about doing something for yourself that's healing and non toxic. I used them when I had the most horrendous bone and flankpains.The natural compound found in that oil is the most potent antiimflammtory on the planet and the active ingredient in many medications. Castor oil packs have been shown to help liver detoxification naturally, break down kidney stones, support uterine and ovarian health, improve lymphatic circulation, increase blood flow and reduce inflammation.
1. Castor oil Improves Immune Function
Castor oil has strong immune-enhancing effects that support and improve the lymphatic drainage. You can use abdominal castor oil packs to significantly increase the production of lymphocytes—white blood cells that help produce antibodies to fight invading pathogens.
The lymphatic system also impacts the circulatory and digestive systems in helping you to detoxify, support heart health and heal digestive issues such as diarrhea and constipation.
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Zarovka, that sounds completing unnerving, to be without a plan and not knowing when it will crystalize. Is the tace expert familiar with tace in your scenario? Maybe the fact your new MO hasn't really wrapped his head around tace is because it is cutting edge? Which, to me is a good thing, cause the old ways aren't so great. Can he proceed without the agreement of your new MO?
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Hi AnimalCrackers—I’m not sure if it’s just AKT or AKT1. I will find out. Thank you for the heads up about your clinical trail. I will do Asearch and see if I can locate it. Thank you so much, and good luck with it!
I'll PM you if I have any questions. Thank you again....
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Z - I am so sorry to hear that you are in pain both physically and emotionally. I pray thatyou’re able to get your plan figured out soon, and it does wonders on your mets.
Hugs and prayers to everyone!!
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Z, just wanted you know that I'm thinking of you. Once you go forward with a new plan, I'm sure it will get easier. I am concerned for you and hate to see you in such discomfort and mental distress. You have been such an inspiration to all of us. Hopefully, brighter days are coming. Love and gentle hugs, MJH
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AnimalCrackers- curious how you have felt during the trial; have you had scans? I am planning to do a trial with an AKT1 inhibitor at some point. Love to hear how it's going.
Best, MJH
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Z,
I met with a IR Northwestern’s Fineberg hospital today, and yes I am a canidate for Y90, however he gave me an average time line which was shorter than I expected among patients treated with BC to the liver. Some things he mentioned that are important,
Bilirubin values, if other mets are stable except for the liver and our general level of energy and the level of follow up care. We discussed various treatments such as TACE and it would not be suitable for me as my lesions are diffuse. He also stated he has done Y90 again , as an example someone who is a year or so out and could do another treatment, this is on the rare side. My liver is normal in size, bilirubin and enzymes so far are good, energy good, emotionally I’m a little drained , generally ok but I have my moments.
We discussed scans, he indicated CT’S are best for lungs, MRI’s are best for liver. When you see the ct scan of the liver, it doesn’t show the details and you look better, with mri its very detailed and you see a clearer picture. I saw mine for the first time both types of scans, the lesions are numerous.
My current plan is to see if metronic methotrexate and cyclophosphamide have any effect on the liver, do scans in 6 weeks and then decide.
I hope you get some answers soon,
Hugs,
Kathy
JFL, How are you feeling?
Thinking of you tonight.
All the ladies,
I don’t post so much individually but I include you by name in my thoughts and meditations.0 -
The IR recommending TACE has all my scans going back to the beginning and has been the one reviewing my scans and writing the reports more often than not. So yeah, he knows me and recommends TACE. MOs as a rule are clueless regarding interventional radiology. Even the best ones. It's amazing.
Miaomix - Thanks for the anti-inflammatory/pain strategies. It's just what I am looking for. Something that treats inflammation without being an actual steroid. I'll get into the oils this week.
Low dose aspirin is another way to fight inflammation without steroids. I had to send my husband to the grocery store because we don't have aspirin ... it's all Tylenol and stuff that will put me in the ER in our medicine chest. I took one and already the liver is a little less cranky. DH was amazed that a bottle of aspirin costs $1. No one making enough money on that to market the amazing power in that old drug.
My diet is as anti-inflammatory as I can muster but I still need to up the strategy.
Thank you everyone for your kind thoughts. I can only take empathy from people who are actually in this. Everything else is pity, which I have no use for.
>Z<
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Z- though I don't think a week or two is a big deal in between treatments, I'd walk in to the local guy tomorrow and take whatever he's offering!! Serve it up!! No idea if both can be done at the same time?! good luck, we're waiting to hear!
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Z, I am still following your treatment plans, and I'm pulling for you whatever you decide is right for you. I think you will feel much better once the plan is activated. You are always in my thoughts and prayers!
Much love,
Robin
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one more thing Z,
If your digestive system will allow, ( might have to take those Japanese digestive enzymes of yours) I recommend a juicy steak, or eggs with a good pinch of sea salt to support your adrenals, because you've been under a lot of stress. That sense of being depleted, worn out, running on empty has to do with the adrenals. Strong adrenal are very important for a healthyimmune system.
The body can't use the aminoacids from the meat and turn them into food for your adrenals without the salt, and vitamin C. So maybe a grapefruit or something you like with Vitamin C eaten at the same time. Stress, sugary snacks and stimulants deplete the adrenals.
This nutrition should restore your strength, courage and confidence we all know you have plenty of and prepare you for the next TX, which we all hope will take place asap.
Sending lots of hugs....
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Hellou Zarovka, I am thinking about you and wish you all the best with any treatment plan you will follow. You do everything to save your life so you really deserve it. My daugher is also 11, like yours. My son will be 18. I need to be there for her at least untill she is 18.
I think that local treatment is very important so you should stick with it. Taxanes are also very good option. My friend had also low dose taxanes for liver mets, it shrinked her mets from 11 to 4 and these four are the same for whole year. She is ER positive but she stopped taking antihormonals and takes some homeopatics from poissonous mushroom (Amanita phaloides), I am not sure if this does any good to her, but she is doing great and her mets did not change for more than year. I had resection in November for single met and now after MRI in march my liver is clean. I know it is only four months but I am happy for that, so I think there is reason to do local treatments. My met was grade 1 and no one would give me chemo after the resection (I actually asked for it), only hormonals (exemestan). I dont know how the hypertermia and Opdivo helped since I am in remission from the operation. Some of my T lymphocytes populations went up.
And I wish to everybody good treatments working. I support the liver with milk thistle as well, takeing cannabis suppositoria for night, CBD, kurkumin, Vit D and Vit C
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And I am trying to eat sometimes in the mode 16 hours rest and 8 hours to eat-intermittend fasting, you skip breakfast or dinner. I have read papers that fasting one day before chemo is very effective, you can ear afterwards, even thought I did not want to eat from 4 days after FEC chemo when I took adjuvant treatments five years ago.
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Zarovka, so sad to hear about your hard struggle.. It's all just so taxing, not just the physical but especially the emotional and mental aspect. My MO's office let me know Medical Aid was acting up on the next supply of herceptin, and I felt so defeated for two days can you believe. (The doctors office made a mistake, they did pay) So you are a hero for real, especially with everything you are dealing with. Cannabis oil really helped with chemo, my appetite was ferocious and I was completely unaware of the burning sensations that others spoke of. Only fatigue, but that was no big deal all things considering. Here in South Africa we use a traditional herb called Sutherlandia for liver problems, it comes in tea or drop form. I have been taking it since diagnosis a year ago, just to strengthen my liver ... you can find it online I think. This sounds cheesy I know but you will be okay. I have a very simple and childlike faith in God....I ask, he listens. And I asked him to make you well and let you see old old age xxx
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Z on fasting before chemo see the link....Having dose dense weekly paxitaxol sounds perfect! Having weekly treatment is better, but more expensive (chair time) so every three week is more common. I say go for it and see how you do!
https://www.biomedcentral.com/track/pdf/10.1186/s12916-017-0873-x?site=bmcmedicine.biomedcentral.com
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Babs, your family is just beautiful! Thank you for sharing the picture. I had scans that showed slight progression last week(ct scans) and a mammogram Monday that showed the possible return of my original tumor that was removed via lumpectomy 12/16. With this new news I will be switching from X to either a trial or Affinitor+faslodex plus now leaning towards y-90 before TASE. The trial that Huntsman has right now is only a phase 1, so that makes me nervous. It is a prolactin trial that uses that protein to bond to chemo(not sure which ones are in trial) and another that targets HER2 equivocal, which I am. So meeting with the trial coordinator later this week. I am sad to move from Xeloda and confused why the ct scans never showed anything in the breast, it took a mammo to find. I will let you guys know what I find out. Thanks to everyone that has shared their y-90 experience, makes me feel much more prepared. Z, so sorry you are having a rough go right now. I feel much like you do at the moment without a solid plan and many decisions ahead of me. Hugs to all you ladies. I will leave you with a pic of my greatest joy and the reason why I fight so hard! Alissa
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Mama. What a beautiful family. Of course they are who inspire you to keep fighting.
Z I know we all think you are the smartest, most pro active, self advocating, world traveling, brave (not afraid to argue with doctors), innovating outside the box thinker and doer of anyone we have ever known. But, you are just like the rest of us, too. You cry real tears, you don't know exactly what to do sometimes, you have anxiety, you have sleepless nights sometimes, you worry about your family, you feel helpless some days, you feel afraid sometimes. You are a planner, planners like to have a plan. Your plan still has some ifs in it. I think as soon as the ifs are gone and the doing starts, you will feel like your confident self. 💞
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Hi Z, sorry to hear that treatment-wise things are up in the air and hoping for a speedy resolution. Until your plan is in place please find comfort from the collective goodwill here. Everyone is thinking of you. You've helped us (me) so much, I hate thinking that you're in pain and waiting. Stay strong. Lucia
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I have a lot worries about my liver mets. They had a partial response to taxatore. They grew on herceptin and perjeta. I supposedly morphed to her2+over the last few years. ER+ PR+. I am now on abraxane and herceptin. I don't think the abraxane is working as of my 6 treatment my markers went from up 74 points to 234. I want to discuss a possible change in treatment-but I don't know what to ask for. Also, do you ladies think I should ask for a liver biopsy to make sure I am Triple positive? In June I will be 5 years metastatic-only one year with liver mets. I have a vacation planned in June-but fear I won't be able to go. Any suggestions? Already did Taxol and taxatore. I flew through the aromatose inhibiters. I never took Arimidex. Aside from chemo side effects I feel fine. Just had a clear head MRI. I don't understand a lot of the posts as far as the different treatments.
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Daywalker, Miaomix, Cure-ious, Robin, bstein, Maaaki, Lucia and EVERYONE ELSE thinking of me, thank you. Your comments, perspective and prayers mean the world to me as I go through this. The transition to chemo is mentally very hard.
Oh Grannax - What I really am is a control freak. Not happy with the lack of control... I don't even control the things I SHOULD be able to control like getting a frickin treatment plan from my MO. So, yeah, you got me pegged.
Maaaki - With all the treatment options you have, it makes me wish I lived in Slovakia. Opdivo is an option for MBC here, but only indicated with a BRCA11/2 mutation at this point. I'd have to fight for an exception, although I am not sure why. The trials got good results in BRCA negative patients. But I am not pushing because right now I need something that works quickly and Opdivo would be take a bit of time. This big liver thing is getting old. Fast.
I met with the local oncologist. No genius but what I need is a pretty basic second line treatment, so we got on the same page quickly. He hasn't heard from my primary MO yet. He will talk to the IR. In the meantime, he put in an order for low dose abraxane (not taxotere), weekly. Probably 3 months. Starting Monday. That is Plan A at the moment.
We are going to do 70% of the normal dose. They will allow me to jog/march through the infusions. Moderate exercise would 10X the dose to the tumor ... if my circulatory system works like a rat's circulatory system. We'll see.
The nurse that runs the infusion center is pretty negative on ice caps. Says they don't work. I'm trying them anyway. Ordering today. I would be interested in people's experience.
I've been doing yoga in the evenings because I walk in the morning. But I was wondering if doing yoga in the morning would improve how I feel during the day. I focus on backbends twists and inversion to get space and motion in my abdomen. I think my liver is so big it is interfering with the function of my digestive system, gall bladder and god knows what else. I did a short yoga session this morning after breakfast and wow did that work.
I feel so much better. I will do short yoga sessions 2-3 times per day after eating as long as my liver has doubled the real estate it needs. I don't think my digestion is working properly simply due to lack of space.
>Z<
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Z, I did cold cap therapy with my early stage disease. My oncologist approved for me to due the caps, but the morning I was to do my chemo, I rolled in the cooler with the dry ice and caps and my 2 helpers (Mom and Sis). The head nurse stopped me and asked me what was in the cooler and I replied cold caps and dry ice. She said "This is not going to happen!" I asked why and she said it was too dangerous for her nurses to be working around the dry ice. I told her thats what my Mom and Sister were there for. Then she said here nurses might trip over the cooler. I said to her...YOu just don't want me to do this and save my hair, why? She still said No. So I had to get my oncologist involved and meet with hospital staff...delaying my chemo by 6 hours. The hospital staff approved the caps and I went back to the infusion room where nurse ratchad was informed. I was settling in my chair and she came up to me and said "They don't work anyway." she turned to walk away and I said "you are a nasty person who should find a different career." Long story short the caps work, but your hair might thin a bit. I had long hair that thinned in the length, but never had a bald spot. I bought natural hair extensions and no one could tell the difference. I won't lie...but the caps are a big production. And you will need to follow the strict hair care instructions. BUT THEY WORK!!!!!!!
I am also doing low dose weekly Abraxane and the only side effect for me is the fatigue. I get a slight bloody nose from time to time but otherwise I feel good and think it's relatively an easy chemo. I do 160mg each week and it is working. My oncologist told me to take alpha lipotic acid and B6 to help avoid neuropathy. I may also start icing hands and feet. I do not want to deal with that condition.
I'm glad the plan is in place and you go do those caps and show that B---h that they work. Sounds like with her pessimistic attitude, she need a new career!!!
Praying for you always!
Robin
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I just got this article from Medscape about scalp cooling with BC chemo:
https://www.medscape.com/viewarticle/894727?src=wn...
Scalp cooling before, during, and after chemotherapy is demonstrably safe and effective for the prevention of chemotherapy-induced alopecia and should be offered to all patients concerned about what can be a devastating side effect, an independent review of US-based experience says.
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Zarovka, you would not want to be treated in Slovakia. I got Optivo and hypertermia on private clinic in Wienna. It is only one hour drive from my home. Here the insurance doesnt want to give patients Ibrance and the main oncology hospital ditched the study on Kisquali. Doctors and nurses are great but the management is horrible. They also dont do local treatment on metastasis for breast cancer. For colorectal yes, I was operated only because it was not sure on Mri and on petct what it is and they were afraid to biopsy since it had a lot of blood suply. The surgeon was however very skilled with colorectal mets he took it out laparoscopically. Never heard on Y90 or TaCe here only from your posts on this site
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