How are people with liver mets doing?
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artist this is truly our safe place!! When I blew through 2 treatments in under a year I was so discouraged and down so I know how you feel. I'm hoping the lower dosage works🙏🙏🙏🙏
Bab
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The reasons j keep fighting.
This is Kylemor Abbey in the background. We had a great 3 week vacation in Ireland.
One foot in front of another. Keep fighting.
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Leftfootforward,
Beautiful
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i asked the Dr if he would now consider my scan n e a d. He said yes. I really like him and his staff I hate to change docs now. Shetland, yes my horse is there and there is another one my sister wants to sell but can ride him country pleasure which I love. Hugs to all
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LvinAZ44 - The transition sounds hard but it has all the signs of a new beginning. I expect we'll be hearing from a happy, healthy, horseback riding LvinOH06 in 6 months. Congratulations on NED.
>Z<
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I hope so too babs. Plus I keep waiting and hoping to hear of new things that can keep us going. I try to think "one day at a time". leftfoot, Beautiful family picture there! What a wonderful vacation. I am Irish and my grandparents and parents always talked very fondly of their "home" so I would love to see Ireland some day!
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Okay people, I have more questions. I'd like to know how long you have had liver mets from BC, which drug/drugs are you taking due to liver mets, if they are helping and how long, thus far, have they helped, and, if you have lost your hair due to meds from liver mets. Sorry for all the questions but this is the place to ask.
Thanking y'all in advance.
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Naturegal. I've had liver nets which were diagnosed in Ictober 2015. I've been on 2 treatments that didn't work. I started Xeloda in January 2016 which brought me to NED. I haven't lost my hair. Some thinning on Ubrance but that's all
LivingAz NED is fabulous. Glad you've joined me there. I only wish everyone was with us!!!! With NED you can make any transition. Seems you're better off without a bf who would desert you now.
LFF great picture. Thanks for sharing
Babs
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nature gal- I was diagnosed with live mets in late November of 2012. I was also diagnosed with brain mets at the time. Was placed on Xeloda and tykerb ( for brain mets). Have been on xeloda ever since., tykerb was changed to herceptin in June 2015 as I developed a single liver tumor. I had a partial liver resection in July of 2015 to take care of it. I was taken off herceptin in March 2016 due to heart issues. So only on Xeloda since then.
I have kept my hair throughout., other than then one tumor ( which appears to have been mutant) I have been NED since starting Xeloda.
Plan is to stay on Xeloda until something changes.
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naturegirl2...I landed in ER in Nov. I found out my liver was covered in tumors. The doctors gave me that "look". I started on chemo, AC, and it helped! Scans show my liver shrunk and so did the tumors. I received my lifetime dose of AC. I did lose all my hair.
Got a $ report from Foundation One that stated the newly approved drug Ibrance is targeted for me. I started on it @125mg and landed back in the hospital. Too much for my body
I started on 75 mg on 6/24. So far it's tolerable, and my hair is growing back....hope this info helps 
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Naturegirl, my liver mets were innumerable. It was scary how protruded my gut was & how hard the liver felt. I just finished 6 doses of Taxotere, which showed good results after the 4 treatment. Lots of spine & bone mets popping up.
I did lose my hair, really looking forward to have it grow back. Mo'snext plan is for me to get the Faslodex Shots, once a month & Zometa.
Retz, who are the Foundation One? I was told here to look into Ibrance. Seems lots of ladies are receiving it.
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Holeinone...my onco dr told us about "Foundation One". They need a piece of your tumor on a slide/ dna and they found how my cancer mutataed and the 33 pg report said that Ibrance is the targeted drug for me. Google, Foundation One, they do non profit it's a 2 pg application and they might pay for it
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LivnAZ, that's amazingly wonderful news that your scan showed NEAD!
Naturegirl2, to answer your query: Liver mets found about two years ago, taxol wiped them out in three months and also took my hair; now I am maintaining on Ibrance + letrozole and have short hair.
Artist, so it looks like Ibrance may be the prime suspect for your high liver enzymes, right? I hope the lower dosage will be doable. Don't forget there are those who get many years out of a hormone treatment alone.
Zarovka, you have such a fresh way of looking at things! (e.g. A new beginning, a cleansing ritual.)
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Retz, for what target gene alteration was Ibrance noted on your Foundation One report?
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Thanks Shetland, I sure am hoping to find one that I get many years out of. I have so many things I want to do! I hope the lowered dose does it because yes Ibrance looks like the culprit. Shetland, How is the decluttering going? Have you been able to get a plan of attack going? Our stuff has been building up for so long, between the yard, garage and house, it seems like it breeds in the closets! But we have been tackling it one little piece at time.
naturegirl, I was Dx almost 1 year ago with a couple of liver mets. Did the Femara/Ibrance combo first, and my scans showed improvement, but my liver enzymes became too elevated. So I switched to Faslodex only. That failed, so now am on Arimidex and Ibrance at a lowered dose 100 mg. But again my enzymes shot up so now am going to 75 mg. Have another scan in August to see how Arimidex is doing. Onc says I can return to Femara if need be.
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naturegirl - I was diagnosed in 1/16 with ERPR+ 5-6 small (<2cm) mets to the liver and possible mets to sternum. I started on Ibrance and letrozol in 2/16. In 3/16 I did 3 weeks of alpha lipoic acid IVs and started a complementary therapy protocol. My tumors had shrunk by half from this regime in the pet scan I had in early 4/16. Next scan is later this month. No hair loss on this regime, but side effects are life changing. no estrogen leaves me weak and the ibrance does make me tired, and has some other weird consequences.
>Z<
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Back from vacation and I am bleary eyed from all the reading to catch up with you all! So much good news, though! I'll not be able to comment on all as I would like but... Yay, Babs and Leftfoot and Mattifang! So great to hear! Livin, I do hope you mean NED and your horse is indeed, beautiful! So sorry about the falling out. I do hope what is best works out for you, Ohio or wherever. If you were in Columbus I could recommend the perfect doctor for you. Artist, great about the car, but hating the enzyme thing. You do always find the bright side. I was just thinking this about you when you spoke about your wrist and usual summer activities begone. You'll just find something else to do. I do hope the lower dose continues to work well and the something else drug is a ways out yet. I feel just the same about my chemo being reduced and reduced and now gemzar is out altogether. Hoping for the best on Tuesday with just the carbo. Zarovka and Shetland - NED feels like such a pipe dream to me given the amt. of cancer in my liver and its aggressiveness that I thank you so much for sharing the info that stable may be just as good. I'm gonna go ahead and believe that. I just can't stand reading those median survival stats though. I'll just have to keep believing I'm above average..way, way above and beyond! Welcome, naturegirl! I'm with Artist about the diet. I do common sense, healthy eating, sleeping and exercise. Like Zarovka, I read The Anti-Cancer book applied many of his suggestions particularly those about food but I'm not super rigid about anything. I do plan to check out the Dr. Weil thing Z mentions. Anti-inflammatory foods are important I think so I keep all the cruciferous veggies as Shetland mentioned.
I purposely stayed offline during vacation but I did miss you all and snuck in a read about halfway. I left cancer behind for a while, mostly. Of course, thoughts came here and there and I had a few drip drops of tears at a few sad thoughts that popped right in the brain without my permission. The worst was my gazing foundly at a mom at the beach and her 4 sweet young girls. They were such a beautiful family and for some reason I imagined her so close with them throughout their growing up and getting married and having their own families and her just being there for them always and then I began to feel robbed and I was just so jealous because I am sure that mom didn't have cancer but then again how would I know what she has. You know the stupid thoughts. Anyway, all in all it was a good time but I am glad to be back home. I love home. Chemo Tues. Wish me luck with the carbo and no allergic reaction. Best to all!
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Welcome back, Kaayborg. May your carbo go well. I've been reading about immunotherapy and it seems like you are a candidate for immunotherapy. Here is one list of clinical trials. And here is another. May Carboplatin be easy and work for a long time, but Immunotherapy is something to start researching. Immunotherapy has been accepted as promising for breast cancer, particularly TN HER+ and heavily treated cancers. You want to wait as long as possible to try immunotherapy because it's highly experimental, but I'm watching it for down the road, if needed.
>Z<
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Artist, thanks for asking. Decluttering is not happening yet, but your success is encouraging and inspiring! I have recognized that I have to choose one thing at a time, so for the next few months I will spend my time and energy on my dance groups. Then when things slow down there, I will turn to the decluttering. I plan to opt out of the big extended family Christmas gift exchange, so I can use the time and energy for decluttering instead.
About the weak and tired that Zarovka mentions, do you guys ever think something like this because I do: Wow, I am doing so many healthy things that if I were a "normal" person my age, I would be in super shape and feeling great. But as it is I can barely maintain.
Kaayborg, welcome home. I understand about trying to leave cancer behind on vacation. If only we could leave our fatigue at home too. My vacation had some good parts, but overall did not live up to expectations because of several things that happened. It made me feel like spending money on a vacation is too risky. During mine I got lonely during the night and went on BCO a bit too, in spite of my prior resolution to stay off. I really get what you say about the family on the beach. I sometimes cry when I see beautiful little children and think I will probably not know my grandchildren, and that my kid will not have a mom for support. Then, somehow, hope reasserts itself. Just in case you haven't read it, see below for The Median Isn't The Message by Stephen Jay Gould.
http://www.phoenix5.org/articles/GouldMessage.html
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Shetland, I had not read that article and I love it! Thanks. Z - my doctor wants me to do an immunotherapy trial next. She says earlier is better for effectiveness but feels it would be a mistake to leave my currently effective chemo for it. I have high hopes for the trial from what I have read but patiently wait for it wanting to get the most out of carbo first. I'll be trying for a PDL1/abraxane combo. I read that for some tnbc patients this is game-changing treatment having gotten 5+ years out of it and counting. There is a trial at OSU now accepting 2nd line patients.
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babs, thanks for your response. That is super good news for you, NED. Since I was diagnosed with Stage 4 back in Nov. 2012, I was never NED from that day on no matter what meds they prescribed. It must feel good! Congrats. So encouraging!
leftfoot, wow, fantastic, another NED! Way to go girls! Glad y'all did not loose your hair either!
babs and leftfoot, any SE's from Xeloda?
Retz, that is great AC shrunk your liver tumors. Never heard of AC. Hope Ibrance does well for you.
Holeinine, that must have really been scary for you. Glad your meds helped you. Thanks for your input.
Shetland, thanks for your input as well. Great your meds wiped out your liver mets in 3 months, sorry you lost your hair. Good luck with Ibrance.
Hi artisthea, did you have side effects from Arimidex, did you loose your hair? Good luck to you as well with your reduced amt of Ibrance.
Thanks all for everyone's responses. It's been very helpful to me. I await my oncol. appt. that is this Wed. Showdown for sure. Megace, my prescribed med for 5 weeks, just is not cutting it for me. I have been taking 400 mil Ibuprofen every 6 hours as well to try to keep the pain down, my poor liver, how much can it take? My oncol. knows I will not take any med that I will loose my hair, sorry, it's the way I feel and I put my foot down at that point.
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naturegirl, Like Z I get very tired on Ibrance, even the lowered dose. Also my nasal passages get plugged up much like a bad allergy attack. So at night I end up breathing through my mouth while sleeping, get a very dry mouth and pressure headaches. I did notice the first time I did Ibrance the headaches subsided after cycle 2. As far as Arimidex, I did not lose any hair and no SE's that I can tell except a little achier joints, knees, ankles, hips.
kaayborg, Nice to see you back. I'm glad that all in all your vacation was a good time. I went for a week too and had mostly a nice time, but like you I love home. I am a classic homebody. I can spend all day just tinkering around my house and be happy. I know exactly how you felt gazing at the mom and her girls as I find myself doing the same. Looking at people living their lives looking so happy and carefree. I too assume they have no traumas going on, they will be there for their children and grandchildren and I feel so jealous and sad. Then I feel even more isolated and lonely. This is all so hard. I can't stand to look at stats either as it brings me right down. I mostly try to believe I will be above average and that new treatments will quickly continue to be developed and they will get better and better! Because really the only other choice is to live in a black hole which would be a waste. We are all wishing you a great Tuesday with your next Tx and no allergic reactions and you keep on it for a long long stretch!
Shetland, I think choosing the dancing is a way better choice than worrying about getting your house in order. Just to get out and move and be with friends and feel the exhilaration of dancing sounds heavenly to me! Remember the old poem about how the cobwebs will wait until you do the things that really matter? I think you are awesome for pursuing your passion. We also have opted out of big Christmas exchanges. Mainly because, lets face it, none of us needs more "stuff" or the stress of picking out more "stuff" for someone else. We just get together and party. And yes I do think about what great shape I would be in if only.......Last July I was riding my bike 15 miles a day in the summer, I skied last winter. We lose soooo much......Nice link too, thanks Shetland! I need that stuff.
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Yes, and I don't know when the ability to dance might be snatched from me, so I am going for it. A nice home to putter in sounds heavenly and matters to me, too, so I look forward to getting closer to that come winter. Then my garden. I hope. Then I will have everything I want.
By the way, I understand dry mouth can be bad for your teeth. During chemo my nurse recommended Biotene dry mouth oral rinse. I still use it occasionally. I use their "PBF" kind because that one has no parabens.
Kaayborg, that sounds like a good plan. Is your onc pretty sure there will be such a trial available when you are ready, then?
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Shetland, my onc actually said that immunotherapies are close to market. My optimistic thinking is if carbo fails soon, I should be able to get into the trial at OSU or a larger trial. If carbo lasts long, then maybe the treatment will be standard care. But basically, it's as much guess work as anything else. Ultimately, I completely agree that we don't stop what works.
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Yes. This forum is the Lake Wobegon of breast cancer. Like the children of Lake Wobegon, we are all above average.
I ran, well jogged, slowly, one mile this morning. And it was kinda all downhill. I am far from my half marathon days, but still it was quite a way to start week 2 of cycle 6 on Ibrance. Kudos to all for your amazing accomplishments as we dance and walk and fight our way through these treatments.
Keep as healthy as you can because there are so many options for us coming down the pipeline. (I've been reading, again.)
>Z<
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You are one energetic lady Z! I did go on a nice little hike to the lake with my DH and dog. Probably only a half mile and I was breathless by the time we got back to our cars but it sure lifted my mood.....
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I bicycle rode this weekend for the first time in over 40 years!!!! Didn't know what gearswere for!!! My heart was pounding. Before bc I was working out 4-5 times per week. Now only a little in a study at Mskcc. I really need to work out again. Hopefully I'll start soon unless I find another excuse not to!!
Babs
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I train with a trainer 3x per week. Doesn't help with my weight but I am stronger. In Ireland many days I had hiked/ walked over 5 miles according to my Apple Watch. Glad I took a Xeloda holiday as that certainly helped. I will admit I couldn't keep up with my kids but at least I was still out with them. It is very hard to be active on this regimen.
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I'm starting to run after being encouraged to do more cardio by my onc (walked, did yoga, and rode my bike short distances before). I'm on the couch to 5K progression, though I don't up the intensity every week but rather on my own schedule when I feel that it's become a bit too easy and that my heart rate no longer meets the rigorous level. Currently I run 3 min walk 1.5 min, run 5 min walk 2.5 minutes, then repeat. I thought I would hate running but it turns out I like it a lot and it truly does give me more energy. I too think that if I didn't have treatments knocking me down a bit, I would be an energetic wonder. I do regret that I didn't do this years ago. I feel so great! Not sure what to do once cold sets in. I love it b/c I'm outside. Started in the spring.
Anyway, I had chemo today but platelets were discouraging. Only 80 after a three week break and only half the carbo cycle. No way I'll pass next Tues but they still want to try for it. If not we'll try for treatments on days 1 and 15 instead of 8. I doubt that's gonna pan out either. I also need to slow the infusion even more as I had another allergic reaction, though I caught the symptoms earlier and it was much easier to control. Feeling in limbo but do agree that we must just keep trying it and see what happens.
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kaayborg - you are one tough lady to face down that infusion allergy drama weekly. it is a good plan to hang in there and keep trying, but it's got to be hard.
i am starting to feel a bit lazy after listening to all of you guys talk about all the exercise you are getting. time to get to the gym ...
>Z<
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