How are people with liver mets doing?
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Actually please would you recommend me which hospital in US I should contact for another opinion? I have two different genomic test done (Foundation One through the Roche and Pantherchip in prof Bojar in Germany, the results are slightly different and I would like to ask for another opinion if I should take Ibrance or Kisquali or exemestan is enought. My doctor wants to add it only with the progression and probably I would need to pay for it.I was thinking Mayo or MD Anderson or Dana Faber? Thank you
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Hey Z, I'm so happy to read you will start TX on Monday with low dose Abraxane. Which is a newer and better drug with fewer side effects than the Taxotere—I believe. It's one of those drugs I would choose as a TX for myself when that time comes. And as rpoole explained you can protect your hair by using the cold caps.
I believe you're going to benefit tremendously from this.
I will continue to pray and wish you well as you undertake this new treatment.
You can do it! It will do you good!
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Alissa, your children are adorable. What a great, joyful picture with the bunnies.
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Z, Yay, great to hear you have your plan!
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Hi Lisajo6,
The FDA has recently approved what they call a LIQUID BIOPSY. It might help your MO find a TX that's more appropriate for your genetic profile, or clinical trials that can be of benefit to you. I’m going to get this test done for myself as well
I wish you well with your next TX...sorry I can't be more helpful...
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Maaki, the hospital you've mentioned are all top notch.
I would add Memorial Sloan Kettering Breast Cancer Center to your list.
Good luck!
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Z i took Abraxane back in 2010. Of all the chemotherapy I've had it was the easiest for me to tolerate. And i was taking it every two weeks, I think. The best part was they did not make me take steroids as a pre med. I dont do well on steroids. I think they had me take benadryl, though.
That was when my husband was being treated for pancreatic cancer, we had chemo dates. But, i was able to take care of him, during his last year, even though I was having chemo and radiation TX.
Praying that it will be tolerable and effective on those nasty liver mets.💞
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Z- Great, a guy with a plan!!! Hopefully with the reduced dose, you will not need steroids? They are essential for surviving higher doses of chemo, but definitely they strengthen cancer cells against chemo-induced killing.
I am a strong believer in the value of including regular periods of fasting for all kinds of ailments, and just to stabilize your normal metabolism, and there is some limited pre-clinical data showing it helps with chemo. Here is a link to a recent attempt at a clinical phase 1, but wow, could people be more of a mess? One guy 'forgot'?
No doubt it is easier if you believe in the power of fasting, but in principle it should improve chemo killing, reduce side effects and damage to your white cells, and help you recover much more quickly. In the paper, they describe how they recommend the procedure to go, one or two days before the chemo and no more than one day after, because you need to recover and the chemo has already gone to town on the cancer. Best of luck-
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC49014...
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Hi! I am new to this forum. I was diagnosed with liver mets in February. I've been reading the forums and trying to catch up. There's so much to learn and read.
Everyone on this liver mets topic is amazing! Thanks for sharing your experiences.
Z - I did cold capping in 2016 with taxotere. It was a huge success. I wrote several pages on what you'll need, what to do, and what to expect. Please pm me if you would like me to send the info. Also, I went for a long hike almost everyday. It was difficult to get going but I always felt better after finishing.
Thanks everyone!
~Kar
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Z, happy you have a plan! With a 70% weekly dose and cold caps, your hair should hold up quite well. Dosage has a lot to do with taxane hair loss. I tried a modified fast my first Abraxane but it was too difficult to handle with the cold caps for me to continue it or take it to full fast territory. I will tell you, planning to work out and do the caps may be tough. I had a hard time doing anything in the caps but mine were extra painful because they were too big and had to be wrapped painfully tight to compensate. Also, the working out could cause your scalp to heat up and counteract the caps. You are a champ and if someone can make it all work, it is you. Just wanted to give you some food for thought to consider in your planning stages. I think this treatment plan will whip your liver right back into shape.0
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Zarovka have you tried taking 'Basica' twice daily with Apple cider vinegar? Also I take Milk thistle and very hight strength tumeric and probiotics. All these things stengthen the digestive tract, ease bloating and alkaline the body. Also they can all be taken whilst on chemo.
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Hi Y'all. I've been on Ibrance / Letrozol (post initial AC chemo) since February 2016, and it's worked like a charm. I've felt normal, no different than most of the people I know in their mid-sixties. I am a realist, though, and after my latest scan on Tuesday, the other shoe finally dropped. My liver now has "numerous" spots. My blood work looks great, my enzymes are fine, my tumor markers are not elevated, and there is no liver enlargement. There is what may be inflammation in one of my lungs where I've had a small and stable tumor since the git-go, but no other signs of progression. My Onc at MDA is scheduling me for a liver needle biopsy next week and he's going to present my case to the group...he seems puzzled by this latest development. I'm not freaking out...I'm an under-reactor rather than over-reactor, but I admit I'm a little scared. My motto since November 2015 has been "I'm not sure if I'm zen or if I'm just shell-shocked." I suspect I'll be hanging around here more once I know what's going on and have a treatment plan. So, onward through the fog.
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I love your motto Kattysmith: "I'm not sure if I'm zen or if I'm just shell-shocked." I feel the same as you do.
But with this disease, we all have good reasons to not overreact and to be a little scared at the same time.
However, it seems to me that you have a great team looking after you, and that should allow you to chill a little, knowing that they will do what needs to be done to ensure the best outcome for you.
Best of luck with the biopsy....
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Z - so glad you have a plan for low dose A-train. I think you will find it very tolerable for 12 weeks and please use cold caps to save your hair as JFL and I have done. I used Penguin caps, kept about 75% of my hair but cut it shorter when it thinned. Its growing back fine now and I colored it! You will know if you can do yoga on treatment day or not. Please allow for some rest, the premeds can make you tired; do you know what premeds you will receive? Don't drive alone to get treatment - take that cool bus or uber. I am in your corner. PM me as needed. Your port will make this easier too. Wear layers in case you get cold. Cold caps are chilly!
(()) Claire been there done that on A-train
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I am so engrossed reading all these posts and links. By the time I am done with one excellent paper or reference, there are 18 more posts, I can't remember who to thank for the paper I just read and there are 3 more references I really need to read.
So, thank you BCO friends. You may not get the individual response you deserve as my priority is to extract, prioritize and implement the ideas that you are pitching. But what a powerhouse this bunch of ladies is ... Thank you.
Of course I'll probably read 10 more papers before chemo, but the plan is to start fasting after a light breakfast Saturday. That will be 48 hours before my 10am chemo on Monday. I'll probably fast only 8-10 hours after infusion as Abraxane clears the system fast. I'll try at least walking a bit before and after treatment. All this talk of fasting makes me think I should be eating less right now, but of course, I need to be eating more now.
Abraxane mostly clears the system in 8 hours. The pharmacokinetics are really fast. I think I will have a light dinner on Monday night. I am worried about disturbing my sleep for 3 nights in a row. The big gap in my thinking is what the best recovery meal for Monday night would be.
It's a 30 minute infusion. Penguin wants me wearing cold caps an hour before and 2 hours after treatment, so we're looking at 3.5 to 4 hours of cold caps, right about at the time I should be moving a bit. FWIW, it takes a moderate level of exercise to effect tumor uptake of chemo, in mice at least. No sprinting around the parking lot in a cold cap necessary. A brisk walk should do it. Fortunately the hospital has a back door because I am going home in a cold cap and this is a small town.
KarPC - PM'd you for info. Flood me with cold cap info, please.
Cure-ious No premeds for me. According to the NCI Abraxane Protocol it is not necessary. The doctor pulled the protocol off the web while I sat by his side (MO is no genius, but this is not rocket science). He first offered taxol with steroidal pre-meds (dexamethasone). I declined as I can do without steroids. He said that he goes for taxol first because it is cheaper (I like him, he's honest) but if I wanted Abraxane that would be fine. (See, what's not to like?).
I thought Abraxane was a generic as of 2016 so it shouldn't be expensive. He may be confused. I was talking to him on his second day on the job after a sabbatical of several years. Stick with me, ladies. Local MO is easy to work with but pretty raw. It is important to me that this plan makes sense to y'all.
I love the paper. "Reasons for failure included forgetting (n = 1) and desire not to fast due to social constraints with visiting friends/family." Obviously N=1 is not a stage IV patient. My reason for fasting is a strong desire to visit with friends/family for the foreseeable future.
One of the better explanations of IGF-1, but still confusing. Lower IGF-1 protects healthy cells but not tumor cells because of mutations in the IGF-1 pathway? "Constitutive activation of IGF-1 downstream mediators renders the tumor cell irresponsive to fasting-induced cellular protection."... And hopefully dead as door knob by the end of the day. Am I getting this? IGF-1 was not reduced in the 72 hour cohort and I find it funny they assume those folks were cheating. 72 hours is a long time. So, yeah. Probably cheating. I want those phase II trial results yesterday.
I noted that they think dexamethasone (steroid) screwed up the effects of fasting for some people. So glad I am not taking that.
Hey Claire in My Corner - My Penguin caps arrive on Saturday. Not pleased to find that dry ice is going to cost me $50-$100 per infusion ON TOP of the ridiculously expensive rental of the cold cap. Whatever. There is only so much trauma I can take at one time, so I am going to keep my hair, or as much as I can. Won't drive I promise. I've worked hard to arrange IV's at the infusion center 10 minutes from my house. I could walk. I will walk if I can, but the bus runs the route I walk.
JFL - I am going to bathe in your positivity for the duration of the treatment. Thank you. I agree it is unlikely that fasting 60 hours around treatment and exercising during the infusion all while wearing a cold cap is going to work. Given that I am vain, cold caps will take priority. I expect I will exercise or fast but not both. Fasting basically 2.5 out of every 7 days is a lot. I'll either pass out or achieve enlightenment. Will keep you posted.
Hugs Kattysmith. It's better to under react as we move onward through fog. In my case, over-reacting for 4 weeks has been really exhausting. Stay with us. These ladies will help you find the right balance between advancing your care and enjoying life. Both are essential. In truth, once your treatment plan is set and being executed, it's best to float down Denial. It ain't just a river in Egypt.
>Z<
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Ladies - just back from onc one month after my dreadful fall and finishing head rads. Worried about being off x for a month and what blood and TMs whould be. TM was the lowest in a year! - CA 27.29 was just 92. It was 170 before rads - happy dance here. Liver function was in normal range - lol. But due to mouth sores - I restart x in 2 weeks. That is fine by me! I think the head rads killed the skull/dura met hence the drop in TMs. So glad.
Z- you got this girl. Write the med costs including Penguin costs off on your taxes. Some small relief. Miao - excited to see you in Chelsea. Kathysmith - welcome to our group (sorry you are here), but now "on the shoulders of giants."(()) Claire heading for an ice cream treat and a mani/pedi - why not?
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That's excellent news lalady. Enjoy that well deserved ice cream and mani/pedi. Be good to yourself.
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Happy for you laladay! I had abraxane today-getting cat scan next Friday to see if it is working. Waiting for tumor marker and liver panel results in a few days. I do have a question-I have posted a couple of times asking for advice and I really get no responses. I get one about liver mets that I recently posted. Should I be posting somewhere else?
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Why not, indeed, Claire!!! Top off your great news!!!
Ooh, Z, I forgot that the Abraxane is weekly- maybe just do a short mini-fast, like half of a day before the infusion is good enough to get your cells into a nutritionally depleted state- the cancer cells are weaker than normal cells anyway, and should be more sensitive to killing; they get bulked up by steroids like normal cells do, so there is no point to fasting if the protocol includes steroids (plus the steroids would make you too hungry!). don't worry too much about afterwards, its not as important as getting the cells into a weakened state for when the chemo first hits them...
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Congratulations Claire! I'm so happy for you!! Those are beautiful numbers. It's time to celebrate. Looking forward to meeting you soon!
Z—as far your recovery meal is concerned, have various choices ready, since you don't know what you're going to be in the mood for. Warm and cold, and, liquid and solid...all foodstuff that would make you want to eat, as the most likely issue will probably be nausea
Wishing you well and sending you lots of hugs.
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Great news, Claire!
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lisaj - I am so absorbed in my own troubles at the moment that I have become heaping pile of tears with no opinions. Will go back and find your questions, repost, comment and give you the welcome you deserve. Let's see what we get from the brain trust. We have our ups and downs here as far as cycles to help people for sure but over time you will learn a boatload from these ladies. It helps to go back and read through old posts. I'm joining the Abraxane thread (alas), but I'll start by going back and reading through what people have already written. We're glad your here.
Miaomix - "your most likely issue will probably be nausea." Rats. You are a wonderful addition here. Very real. Maybe cream of wheat?
Claire - I am so pleased with the lower tumor markers. YAHOOO. I am hoping for the lowest dose of Xeloda your doc can order.
<< closest thing to a happy dance icon. This interface could be better.Cure-ious - tks. I am going to see what I can do fasting-wise while still remaining present in the corporeal plane. I'm a mom so I can't get too disconnect from this world.
>Z<
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Mama2 your children are just beautiful. They are the fuel that makes us fight this f—Ing disease Love and enjoy every minute with them!
Z you have been “the source”. Your knowledge your courage and your drive to beat this disease has been such a shining example to all of us. So to read today how you’ve been doing and not having a plan in place really broke my heart. I’m so glad your local mo and you now have a plan. I’m sure you’ll go forward as you always do- with great determination. You go girl!
I had my chemo tonight and tomorrow is my second Y 90. Will keep you all posted!
Babs
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Z,—I'm not sure about cream of wheat..as far as I'm concerned I would have a coal oven pizza or two ready to be delivered as soon as I got home...
You know...us Italians....can manage to eat pizza ( as long as it's the real thing) even when nauseous...that's really what happened when I was getting rads on my back last year....you got to spoil your inner child while going through all that stress.
Mine loves pizza, pasta and Tiramisu.... last night she wanted a Pad Thai with shrimps for dinner, that's what she was in a mood for, and although it was a junky carb-rich food, we took couple metformin and enjoyed it anyway. How can I deny little miaomix what she wants, considering how scared she is by all that we're going through?
Listening to Kiri sing Mozart goes well with comfort foods...
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Lisajo -
You mention that you are on abraxane but you don't think it is working because your tumor markers are rising. First, rising tumor markers mean you need to get a scan, but I would never change treatments based on tumor markers alone. I read that you are getting a scan on Friday. I SO hope that you are responding. Rising tumor markers can come from dying cancer cells. It is not common, but it does happen. The scan will give you an answer. Please let us know. I am so glad your brain MRI is clear.
So what if it is progression ...
You were asking about Xeloda as a treatment option... I have not done Xeloda but I've observed that it is effective for many people for a long time. I did read a study that showed that lowered doses are as effective as the standard dose and that allows people to stay on it longer with fewer side effects. It's odd that you haven't tried Xeloda and an important option to consider. Many people here are on Xeloda or have done Xeloda, but the Xeloda thread has the skinny on Xeloda. I can't find the link, but perhaps someone else has it in their favorites ...
I don't know from your post if the liver mets are your primary point of metastasis. Regardless, I agree the liver mets are the thing to worry about. If most of the trouble is liver, you MUST consider local treatment of liver mets. There is a treatment involving chemotherapy called TACE and another treatment involving radiation called Y90. These are medications injected directly into your liver through a vein in your leg.
Many people do these local liver treatments, many people do well. There is a thread on this treatment option. You must go to see an interventional radiologists who performs the procedure to evaluate this options. MO's are not aware of how to use this treatment for MBC or how it works or when it is appropriate. MO will generally tell you it not an option for you even though it is an important tool.
A liver biopsy and, specifically, a genetic analysis of the current tumors is worth doing. Not just immuno-histochemistry (ERPR? HER2?) but the genetics of your tumor. I prefer Caris. Another option is Foundation One. These tests require a lot of tumor tissue ... ask for 12 cores. They say they need 8. I asked for 12 but only got 8 viable cores. These tests can, sometimes, identify an Achilles heel in the cancer that doctors can target. They also suggests trials based on your genetics and immunohistochemistry that might make sense for you. Trials need to be on your radar at this point.
At the same time, these genetic profiles can be disappointing when they don't identify a good target.
The challenge in responding to your post is that you have been through a lot of treatments so the simple answers are not available to us. You have options, but your options will be very specific to your diagnosis and treatment history. That gets beyond what we can pitch here. The avenues you need to pursue are available through NCI cancer centers and trials generally. Consider consulting with Cancer Commons or one of these trial navigation services and/or locating a major cancer center near you with a lot of trials for you to consider.
I feel partly responsible for the lack of response to your questions. I have been weeping all over this thread for weeks and tying up the line. I hope that this post helps some and provokes comments from others.
>Z<
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Thank you so much! I have been following your story and am amazed at your knowledge and strength. I wish you nothing but best results with abraxane. I have only had 7 treatments-and I do know I need to give it time. Once again, thank you. You have given me a lot to think about. I already asked my onc about y90 and he said he doesn't like to do that with breast cancer patients. I also asked for a biopsy of my liver as I am not convinced it is her2+. I had a biopsy done a year ago on a lymph node at the Cleveland Clinic and the report came back I had morphed into her2+. I am not convinced. Thank you again z.
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I got a PM from a member of my awesome BCO braintrust reminding me that Valter Long is the guy who drives the discussion of fasting as a treatment for cancer either alone or in combination with chemo. Here is a good video in plain english by Dr. Longo.
Here is readable article. Fasting-like diet turns the immune system against cancer Seems worth considering combining fasting and chemo.
lisajo6 - I can't recall a single MO recommending a local liver treatment and yet we see success after success here on BCO. You need to politely request a consultation with an interventional radiologist who does either TACE or Y90. Generally they do one or the other. Which one do you want? The people I consult with prefer TACE but we have a bunch of ladies here being seen at the best hospitals in the world (like MSKCC) who are advised to do Y90 and do well. They have different strengths, limitations and applications. I would get the one I could get.
>Z<
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Z- You are an inspiration to me with your knowledge and determination to find the best treatment for you that is out there. Keep on, keeping on. You have a plan now, so execute and go with the flow. You will be in my prayers during this new time for you. And don't forget to keep celebrating life making each day the best day you can make it.
I appreciate every one's update.
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Z. It was my mo at Mskcc who recommended Y90to me. I had asked about it about 1 year earlier and she said the time wasn’t right but when it was she’d let me know and she did. Waiting now for them to take me. Finally some good news My TMs went down a lot this month! I needed this. It gives me some more hope.
Babs
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Babs, great news about tm going down! Always happy to hear such good news.
Therese
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