How are people with liver mets doing?
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Yeah, Babs, NED is a most wonderful thing to hear, and 7 months to boot, congratulations!
Artist, woo Hoo, you did it! So happy for your new car. Put a lot of miles on that baby!! So glad you can now take road trips and feel safe!
Nature girl, we are so fortunate to have so many options! Sounds like your onc is on top of things. I won't be having a scan for a couple of months but I'm on megace and Ixempra so will be anxious to see what's going on with my mets as well. Hope there's shrinkage everywhere!! I feel better than I thought I would on the Ixempra and love that I only get infusion once a month. I feel free!!
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Naturegirl. I'm sorry you're here but the women here are terrific and such a great source of support and info. I had progression to my liver and the first tx was a clinical trial that didn't work at all. My Mo put me on Xeloda 1/1 and as of yesterday I'm NED. Pretty amazing. Xeloda is a chemo pill. You don't lose your hair with it. Is that what they're considering for you?
Babs
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Babs, LvinAZ, Mattie Fang......Great News, Congrats !
Artist, New car, you are living for the future, I love it.
Nature Girl, welcome to this thread, it's been a great source of knowledge & caring support for the last 4 months.
Timothy, wish I had advice. Good luck with the drain, I hope better days ahead.
Wavy hello to all, I missed a bunch, can't look at the page before.
I am getting Taxatere # 6 right now. I thought I would be too sick or weak, but here I am. Steroids perked me right up. I am starting to warm up to my MO, after almost 3 years. I know it was me, being so overwhelmed. She has been open & and informative. Tomorrow Neulasta, next week Zometa, Ah my life is full...lol.
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Naturegirl, I'm so sorry about that news. It must have been like a punch in the gut. I was dx almost a year ago and am doing extremely well on AI's. Know it won't last forever but hope to get lots of mileage before the big guns come out....Cancer bites!
babs, I had a HUGE yard sale on Saturday and unloaded so many decorative "clutter" items. It felt so good I feel like I could do another! I am filtering it down to my very favorite things so I can enjoy them more instead of them being lost in all the stuff. Did my closet too although I still occasionally can't fight the urge to buy a new dress or great pair of jeans.....
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Drained Bev last night. After 4 days she had accumulated less than 300ml of ascites fluid. That's a record low of .075L/day. In fact less than half of her lowest low (0.17L/day), and less than 1/10th of her largest accumulation rates (0.8L/day). Keeping track with notes on all of this so that we can see if it goes up and down with the xeloda or other factors. She goes back to the Onc on Monday for blood tests to see if she is ready to resume treatment on account of her low neutrophil count. I am happy to report that she is feeling really good, aside from the hand foot syndrome. It's wonderful to see her enjoying life and friendships / family once again. For a couple of weeks all she could do was lie on the couch all day. We have a wedding this summer, our youngest daughter is getting married August 1st.
This board is terrific. So full of hope and good advice / sharing.
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Thanks GatorGal! I'm glad you are feeling better. I haven't heard of Ixempra before and, in combination with Megace but hope it does the trick for you for a long, long, time. As you know, that is what I am now on as of three weeks ago(Megace only), prior to this last cat scan due to my oncol. going on vacation, He did the cart before the horse thing, as he wanted me on something since he dismissed Ibrance/Letrozole three weeks ago and scheduled the cat scans after I began taking Megace. It is some kind of shock to say the least with this liver diagnosis. Last cat scan was two months ago, the day before my mom passed on, and the news was not good, but, nothing near this bad news on the latest cat scan. I am scared to death with many lesions and small new nodules in my liver. I also have additional lesions on left 2nd and 4th ribs, vertebral bodies T5, T12,L2,L3, and the right iliac bone. I'm so disgusted.
Hi babs! Thanks for the warm welcome! Sorry the clinical trial did not work for you but Xeloda sounds like it really is doing well for you. My oncol. did not mention which chemo drug next, but I have a hunch it will be Xeloda. I made it loud and clear to him I did not want to be on anything for which I would loose my hair. Sorry y'all, I do draw the line somewhere. No one knows about my stage 4 diagnosis and that would certainly be a dead giveaway, hair loss, and besides, I don't want to loose my hair. It's enough I lost one breast back in 2007 and could not have reconstruction due to whole radiation I received back in 1991.
Thanks holinone. Hi artist, we meet again! Yes, a terrible gut blow, I just don't think I'll be receiving any more 'good' cat scans as I feel the cancer will go from here to there each time from now on. I probably have it in my brain as well and I will NOT have an MRI for that, went thru that once before and cannot tolerate that. It's just so depressing for me right now. Sorry I'm venting on everyone but I do really appreciate everyone's help. Just a real bummer.
Is anyone following a certain diet with these liver mets? And I'm sure and hint of alcohol is out right? Anyone taking any particular supplements for bc related liver mets? Thanks everyone!
One thing good is the cat scan said my liver is normal in size, and, according to the latest blood work, my liver blood work showed normal.
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Nature gal. Don't give up. I know it's easier said than done. I was pretty down and then low and behold Xeloda brought me to NED. I NEVER thought that would happen to me!!!!
Timothy. Gals your wife is doing better. And what a wonderful time for you all- your daughters wedding. Congrats!!!!
Babs
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hi nature girl, when I was first diagnosed with liver mets almost 6 years ago, I stopped drinking alcohol. I also ate a lot of garlic and onions which is supposed to be good for the liver. I drank warm water and lemon juice first thing in the morning ( it's supposed to help detox the liver) and took milk thistle.
I have been Ned for 5 years now and I no longer take milk thistle or the lemon juice, but I still don't drink alcohol.
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I also drink warm water and lemon every AM. and only have one drink per year-on New Years Eve !
Babs
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Nature gal, welcome. I just started Xeloda last month. 2 weeks on and 1 week off. I admit I skipped yesterday and this morning but I will take it tonight as usual. I needed a tiny break. I will speak to my onc about lowering the dosage for sure.
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My wife has completely given up drinking. She was taking a lot of supplements prior to chemo, but has really backed off for fear of interference or overloading her liver. She is taking milk thistle during her breaks from chemo. She was taking a lot of mushroom extracts prior to chemo to boost her immune system, and it really did work. Her neutrophils went up to 3 point something, whereas previously they had been down around 1.3. But, once again, out of fear of intereference with the chemo, she really cut back. It shows with her low neutrophils once again. She takes curcumin between chemo cycles, and also bromelain.
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Timothy. Check with her MO to see what they recommend or don't want her to take
Bab
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Here's an earlier post I made in this topic/thread https://community.breastcancer.org/forum/8/topics/809420?page=104#post_4693541 it might be helpful for others now. Stephanie
Apr 14, 2016 07:40PM Longtermsurvivor wrote:
Hi All,
Haven't had much to contribute recently, as I'm on a different path with liver mets. Hospice choices differ from treatment choices, but I thought of something that might be helpful for others with compromised liver function - different routes of administration for drugs.
I learned this from MTF transsexuals who were taking estradiol to develop female sex traits. For a couple of years I took estradiol for my ER+ breast cancer in an effort to both treat it directly and to resensitize the tumors to anti-hormonal aromatase inhibitors. Another, longer story.
I learned from these women that allowing the pills to dissolve under my tongue softened their effects on my liver. It's a method of action called first-pass effect. By allowing drugs to enter the blood stream through the mouth, rather the stomach, their first pass through the liver was detoured.
I'm probably not describing this completely accurately, but now that I'm taking liquid morphine for pain, I've been given the same advice - hold the medication under my tongue or inside my cheek until it's absorbed, rather than swallowing it to spare my liver. Also, I can take less of the drug to get a bigger effect.
Here's wikipedia on the first-pass effect:
excerpt: Alternative routes of administration like suppository, intravenous, intramuscular, inhalational aerosol, transdermal and sublingual avoid the first-pass effect because they allow drugs to be absorbed directly into the systemic circulation.
https://en.wikipedia.org/wiki/First_pass_effect
You never know when or how you'll find helpful tips for working with our already stressed-out bodies.
And I'll never know if this actually helps drug absorption or just helps me feel better about it.
Blessings and good healing regards for the entire bco world, including this special liver mets community ~ Stephanie
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naturegirl, I am sorry you joined our club and I hope you and your onc soon find the right med for you to kick those mets back. You will find a lot of information on this thread along with wonderful and supporting ladies. You are welcome to come here and vent anytime you like.
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Stephanie
Thanks so much for that explanation about medication and the liver. I take my fentanyl as a spray under my tongue as well as my zofran under the tongue. But I take my Xeloda, Ambien, Citalopram, and Oxycontin as regular swallowing pills.
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Christina, you're welcome!
Before changing your treatment delivery method, be sure to check with your healthcare providers.
You might want to taste too as some meds are foul. Or enteric coated.
warm healing regards, Stephanie
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thanks cjanet, good luck with your new med and please keep us posted.
I would like to know if anyone is following a certain diet who has liver mets? I'd like to know what y'all eat and don't eat, according to first hand info, y'all. I'm also thinking I may reduce my vitamin supps. Anyone taking any certain vitamins with liver mets or has discontinud due to liver mets? Any info would be helpful. I can get quite serious about my diet and follow it if it will help me with liver mets.
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Diet is a powerful tool in fighting cancer. The main thing you are looking for is an anti-inflammatory diet as inflammation has been proven to strongly promote cancer growth. Dr. Weil has the classic anti-inflammatory diet. My personal favorite is Anti-Cancer a New Way of Life. The cancer diets share common threads - like low refined carbohydrates, a wide range of vegetables. Pick up a couple books and follow the one that speaks to you.
I am on an aggressive supplement routine that includes vitamins and herbals. I have liver mets and things are improving under the regime I am on. Milk thistle (sylimarin) is the classic supplement to promote liver function. However, if your instinct is to back off on supplements to protect your liver, I would not hesitate to do so. Your instincts are very important in directing the course of stage IV treatment.
I believe in supplementation for cancer treatment, but I do think it is a mistake to pursue complementary cancer therapies without the oversight of a complementary or integrative MD. Supplements are medication, just not under prescription.
>Z<
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I didn't stop taking anything due to my liver but I did stop taking Vitamin B, chromium and a multivitamin due to their potential to help the cancer cells recover. There have been some small studies showing that these *may* help the cancer cells. Not worth the risk. I also used to take SAM-e for a combo of depression, joint pain and liver function - it helps all of these and I had good results. However, there are some mixed small studies about SAM-e and breast cancer too - it seems to help cancer regenerate on hormone therapy but make some chemos more effective (because it helps the cancer regenerate/become more aggressive, making the cells more susceptible to chemo.) Although I don't specifically avoid anything due to my liver, I do think twice before taking other medications/supplements and ask how will this impact my liver, will it be hard on it, do I need to take this, is it overburdening my liver to take with other medications, etc.
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JFL - A thoughtful and wise approach. I'd be interested in reference to the studies you mention.
>Z<
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Hi Everyone. Jumping back in. Just starting with this page.
Artist, that is so great that you had such a successful yard sale. How wonderful to have less clutter and more cash. Congrats on the car and the good second opinion appointment. I have to say I shamelessly purchase the new dress or jeans if I find something just right. I'm all for anything that can help me feel prettier and younger in the face of these cancer drugs making me feel tired and old.
Naturegirl, don't give up hope. I have to think that normal liver enzymes are a good thing. I second what Babs says. The right drug could really zap those tumors. Xeloda worked for her and Taxol worked for me. I agree with avoiding alcohol since it is hard on the liver. Also I prefer aspirin to tylenol/acetaminophen/paracetamol if I really need something for a headache (which isn't often), because the tylenol insert has liver cautions. I am generally a minimalist with OTC medicines. Which made me shake my head to find myself on five different drugs every taxol infusion day.
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18 months ago liver mets popped up and I had to change my treatment. I went on a trial (GDC-0032 + letrozole) and the mets went quiet. They're not even showing on the scans anymore (if the rest of the mets/tumours would just follow suit!:) ) I kind of lost my taste for alcohol...which might just be me listening to my body and my liver saying nope. Since I'm on a trial I have to really limit supplements. I switched from predominantly oral painkillers to a fentanyl patch (although I still use hydromorphone as a breakthrough). Never discount lots of water to flush the liver when you can't have things like milk thistle!
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zarovka, thanks for the information. I just pulled up & read Dr. Weil's anti-inflammatory diet. I'm glad to hear things are improving for you on your supplement and herbal regimen. I had been taking three 500 mil. high potency vitamin Cs daily but decided to cut back to two and rather than take the two together, take one in the morning and the other in the evening.I also have nodules etc. in my lungs so I thought the Vit C would help that. I was also taking Calcium/vit D vitamins for which I am going to cut back on as well. I want to try to protect my liver and if it has to absorb the Megace(is what my oncol has me on at this time) then that is what my liver has to contend with. Luckily, I do not take pain relievers daily, but every now and then, I take an ibuprofen(400 mil) but I think that may have to change as well. Will talk to my oncol. on that. Yes, I want to revamp what I'm putting in my mouth, both in supplements and in food with the idea of helping my liver. Now I did read recently that cappage and broccoli can be hard on the liver. and, not to drink caffeine or soft drinks and of course stay away from alcohol. I may look into the milk thistle thing, is it a liquid? I'll ask my oncol. as well about that. Thanks zarovka
JFL, thanks for your information as well. I too used to take a multi-vit but quit that many years ago. Yes, one has to think twice and now consider their liver before she swallows food and/or vitimins.
Thanks ShetlandPony on your input too. I incorporated a baby aspirin in my regimen daily as the Megace, or a potential side effect in taking Megace is blood clotting. I asked my oncol. first and he said he thought that was a good idea for me.
MsTee, thanks for your input. That is great the mets are not showing on your scans due to a trial you were on! Guess you are having lots of pain since you use fentanyl patch?
Others, please join in and tell us what you eat and what you stay away from since you have liver mets, as well as supplements, taking or discontinuing use. Thanks everyone!
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MsTee - Would you share the trial you are in? Is it a Phase I/II? What drugs is it in combination with? How are the side effects?
I am so glad that things are going well for you. I have some liver mets I would like to see disappear. There are many interesting breast cancer clinical trials involving the PI3 Kinase Inhibitor Taselisib (GDC-0032). They appear to all be early stage. They may be of use to people on this forum now or in the future.
>Z<
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I just try and use comon sense about anything and everything that I put in my mouth. Not that I don't have my weak moments when i go for the dessert.....Plus both of my Oncs have said that since my liver is not yet compromised as far as function, an occasional glass of wine will not hurt. I had one the other night while on vacation with my family. Not used to it and slept like a log. I try hard to incorporate fruits and vege's into my diet every chance I get, although what is the reasoning with the cabbage and broccoli??? I am not a big meat eater especially processed ones like bacon or lunch meats. I try and avoid refined carbs as much as possible. I should avoid caffeine more although I do love my coffee and chocolate. I have occasional soft drinks for indigestion but try and do sparkling spring water rather than say Pepsi.......Reading all of your posts I have begun to consider a few supplements to add...It makes me very hopeful to read about all the new trials going on as well.
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I wonder if taselisib might be an easier alternative to afinitor (a.k.a. everolimus, which is given with aromasin). They both address the PI3K pathway, right?
I won't give up broccoli and cabbage, because they are super cancer fighters.
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yes, naturegirl2, I have a lot of bone pain from my mets. I have a low-level patch, but it's still serious pain management. I've had rads, which helped, but not enough
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Zarovka, it's like you read minds.
I'm in a phase 1 trial for GDC-0032 in combo with Letrozole. I'm coming up on 18 months. It has some issues but doesn't everything? Overall, pretty tolerable, just digestive issues, mostly. Rapid bowel transit, bad stomach...not unbearable I just had to pause for rads because I've had some lymph node growth (to an existing tumour), but no spreading since I started the trial. I restart in a couple days.0 -
Shetlandpony - I've not used affinitor yet. What makes it not easy? The biggest challenges I've had with the GDC-0032 have been digestive: rapid transit, diarrhea and difficulty eating as much raw veg as I like. Happy to answer any questions or speak to specifics?
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Afinitor (everolimus) is a class of PI3 Kinase Inhibitor, specifically an mTor inhibitor. PI3 Kinase pathways are a component of all cell growth. Everolimus turned out to not be highly targeted to cancer. It broadly attacks normal cells as well as cancer causing dangerous side effects. It was a drug that got fast tracked FDA approval. There are people who feel it does more harm than good and the FDA approval should be withdrawn.
My oncologist is one of them. My oncologist was very skeptical of Ibrance because she got burned prescribing everolimus when it was approved by a similar fast track process. It took her quite a while to warm up to Ibrance and she's still a bit cool to the stuff. All these clinical trials use progression free survival as an endpoint and PFS doesn't translate to long term survival ... but that is another rant.
There is a huge amount of ongoing research into inhibiting PI3 pathways because it is still a promising target. The PI3 pathways are one of the pathways that become deregulated in cancer cells, causing uncontrolled growth. The PI3 pathways are diverse and complex, so the problems with everolimus don't mean that PI3 Kinase inhibition is a bad idea. Taselisib is one of the new PI3 kinase inhibitors in the pipeline. I am so glad to hear from someone who is taking it and doing well. It is amazing to be stable for that long! Please let us know how it goes.
The PI3 pathway may be one of the ways cancer gets around CDK 4/6 inhibitors (Ibrance). The "ibs" may be a tool to prevent or reverse resistance to Ibrance.
>Z<
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