How are people with liver mets doing?
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Welcome back Philly.
MOTH...MO just messaged me this:
1) In the US we CAN get tecentriq if it hasn't been used before if PDL1 positive, even if not in first line.
From the Tecentriq website: "This regimen is also recommended as an option for second and subsequent lines of therapy if a PD-1/PD-L1 inhibitor has not been previously used."
2) Clinical trial with leronlimab is certainly interesting (clinical trial NCT03838367) This is a type of immunotherapy. At this point I wouldn't have you travel/move to Illinois or anything for this yet.
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Hi Philly. Good to hear from you. Sorry I cannot help you with your questions. Just wanted to tell you it is good to hear from you. Keep in touch.
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i need some help please.
wife (mid 50s) started on ibrance + letrozole as first line about 16 months ago. she had bone only metastatic disease. done a tomography 8-9 days ago, multiple small liver mets and progression in bones. seeing the onc tomorrow. im guessing he will say start on xeloda. the thing is she is v v tired. as in knackered. she went downhill rapidly in the last cpl of days. i dont even know why im posting this. my mind is all over the shop. i guess i wanna know if xeloda would give us some extra time. also wanna know if any of you experienced similar tiredness when first diagnosed with liver mets. ty in advance.
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Nixie, I am really sorry to hear about your wife. My wife was diagnosed with liver mets 3+ years ago. She was experiencing fatigue and strange aches and pains at the time and sensed something wasn't right. Her gp ordered tests and found elevated liver enzymes and elevated tumor markers. At first when they imaged her liver, it looked so bad, they weren't sure it was cancer. It might have been some other disease. There were spots, plus one lobe was really filled with something peppered through it, and it looked quite irregular on the scans. They did a biopsy and determined it was metastatic breast cancer. She had a stage 3 tumor (and double mastecomy) some 6 years prior. Had done rads, chemo, and then 5+ years of tamoxifen.
The xeloda worked very well. She had ascites shortly after starting treatment with xeloda. After 30 days, her tumor markers dropped 10%. That was a suggestion it was working. She developed hand foot syndrome from the xeloda, but with reduced dosages (down to 1250 2x daily) and time off (sometimes a week off, other times 5 days on 2 days off), it got a little better. After a year on treatment, she then switched to ibrance / letrozole, and is now on verzenio and exemestane.
My personal opinion on Xeloda, is that it either works, or it doesn't, and excessive dosages do little to promote it working, and simply cause intolerable side effects. University of Southern California hospitals dose everyone the same, 1000mg 2x daily, and they say they get as good of results as anyone, and much better compliance with treatment. The standard way to dose it to take height and weight, and calculate body surface area, and base dosage off that.
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nixie, I have fatigue when diagnosed with liver mets but it was mostly because my blood values were all out of whack. I had very low hemoglobin and needed some blood transfusions. Also needed an albumin transfusion. The liver makes components which are used in all sorts of processes and my MO thought that the tumors were affecting liver function. I was so fatigued I needed to sit in the shower - hat was before I started my chemo+immunotherapy combo. Once I started treatment and it started working (I was scanning every 8 weeks and didn't see improvement until week 16), then I started to get a lot of energy back
So yes, liver mets can by themselves cause fatigue. I'm sorry you're dealing with a mets recurrence. It sucks and these early days suck the worst. It gets better once a treatment kicks in.
Xeloda works brilliantly for many. It's on my list of next things for when my current line fails.
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Nicole- awesome news about your Tecentriq access. That gives you more wiggle room. Yeah, we're stuck in a very narrow framework here in Canada (& it's still not funded by the gov't or private plans ...every 2 weeks I get charity from the manufacturer)
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Moth,
Right ? In Canada , access to some of these drugs is difficult and you have to luck into compassionate care. It's very Frustrating. I know that for other things we are quite fortunate for considering we don't need insurance approval for scans or IV Chemo. There's no wonder if you'll be denied, but I find meds like Ibrance , fluvestrant, Parp Inhibitors, ect are so hard to come by. I'm in NL and it's even worse here in comparison to other provinces.
Nixie- I had fatigue leading up to my progression. It wasn't uncommon for me to be tired, and I took part of a sleep therapy program, that in all honestly, should have worked, but I was re diagnosed right in the middle of it, and knew that the cause of my fatigue was the cancer.
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Philly, hi! Welcome back - you were missed!
I hope the Gemzar does the job super fast! I keep an eye on that thread and the Xeloda one as those are my next choices when current line stops working.
Liver mets and lung issues can both cause so much fatigue on their own and then the whammo of chemo on top - it's a lot.
I had a bout of radiation induced pneumonitis that I ended up needing steroids for. It's a wild ride. There are a couple people on the boards who've had large effusions which eventually dried up so keep the hope. My pneumonitis also came with a teeny bit of effusion but nothing enough to need draining. I did have a consult with a pulmonoligy team and asked if aerobic exercise was ok or if I would damage the lung and they told me to do as much aerobic exercise as I felt comfortable doing and that it would probably heal the lung faster by keeping it moving and supple. Not sure if that applies after an effusion..
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Do "regular" CTs pick up liver/bone mets? I've been told my cancer is "everywhere", but these have not been mentioned. She also said that my cancer was unusual in that it seems to be spreading through tissues rather than as lumps.
Nicole – I am PDL1, DR has not mentioned Tecentriq unless it goes by another name or is ruled out because of other reasons. I will ask. I am not Triple Negative, unless it changed from highly ER+ Thanks.
LovefromPhilly - sorry you are going through this. I've been on some of that journey, and it sucks. With the 3rd BC, I was put on Ibrance/Arimidex. For about 11 months it seemed as if the tumor was shrinking according to CTs. Then the lymphatic arm started swelling significantly and a rash appeared on the chest. DR sent me in for skin biopsy, which showed BC skin. CT showed cancer had metastasized and was "everywhere", but no organs mentioned. The DR took me off of Ibrance/Arimidex and has me on Everlimus/Exemestane . In March I complained how out of shape I was and everything took so much effort. The PT said I seemed to be breathing hard, and thought something else was going on. CT showed lots of fluid in pleura, ER removed 1 ½ liters. Was sore from procedure and it seemed like to took several weeks for lungs to recover and expand. DR suspects clots and/or that I am prone to them, and has me on Eliquilis. In May I started 18 weeks radiation. Swelling shrunk a lot, but CT says it is still there.
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BlueGirlRedState, are you ILC by any chance? That type of spread is more commonly seen in ILC.
Tecentriq is atezolizumab. If you have high TMB pembrolizumab (keytruda) is approved for hormone + cancers with high TMB.
I have CT with contrast and it shows my liver, lung & bone mets (though the bone imaging is correlated with a nuclear bone scan for confirmation).
I think you should get a copy of your CT scan report and find out exactly what it says and what tissues are affected. In US it should be available to you through a portal for no charge.
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Hi Philly,
Sorry to hear that you are being put through so much right now. I can't say that I have had your entire experience but was one of those who had a large pleural effusion. It was actually responsible for my metastatic diagnosis - started with a cough I couldn't get rid of and ultimately had about 3 litres drained off. It kept coming back so had a PleurX catheter inserted so home care could drain my lung a couple of times a week. It took about six months but finally dried up. Now I have a little bit of loculated fluid but it doesn't cause me any concerns. (I do think it makes me susceptible to lung issues. I had pneumonia for the first time in my life in 2018 so COVID was a bit worrisome.) I can say it wasn't a whole lot of fun, particularly when my breathing was so laboured but I'm now 4 1/2 years from my mets diagnosis so doing well all things considered.
I also have liver mets close to the capsule of the liver. As a result, I had pain despite only having a couple of lesions. The "zingers" and discomfort under my right ribs were getting progressively worse when the mets were discovered. Xeloda resolved the liver lesions thankfully.
BGRS, my bone mets and liver mets both were clearly visible on CT scans. In fact, in my case, bone scans have been fairly useless in terms of demonstrating my extensive bone mets. My bone scan looks almost normal but the CT? Whoa... mets everywhere!
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Philly" I was wondering (and worrying) about you. Happy to see your name pop up. I wish I had words of wisdom Try to keep the second thought in your head and push back the first one.
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hi denny10! Thank you so so much for sharing what you went through!! Sounds so similar to me. How is the current chemo treatment treating you? I have a feeling I may be on a few trials and errors here but definitely hoping to the end of world and back that the Gemzar takes the cancer out or calms it down at least.
wow so much fluid in pleural effusion. It can be quite shocking to discover that’s sitting there pushing on our poor delicate lungs!
So glad you are doing what sounds like pretty good? 😊 thank you again!
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Hi, Philly. So good to hear from you. Yep, I’m still hare. Almost five years with liver and lung mets ( and pleural effusive). It’s not the end for you. It’s crazy how everything happened for you. So sorry but there is so much that can be done. I’ve had two sets of y90s, two Microwave Ablations and so many chemos I can’t remember them all. My pleural effusion was never as bad as yours. It doesn’t give me any trouble now. It’s my liver that’s completely resistant to everything except y90.
I just heard from the research department yesterday. I do qualify for the clinical trial that Dee told me about. Since I’m on a three month break from treatment, they want me to wait until my break is over to start the trial. So, in October I will start the process.
I’m just happy that I qualify without any hassle. PTL.
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Grannax,
Wow, what great news about the trial. Is it the same one that Dee is on? It makes sense to finish up your break and then start -- and then you get the benefit of the break.
Philly, good to have you re-emerge. Hang in there -- your docs will have you feeling better.
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Hi Philly, I feel a lot happier since seeing my oncologist last week. Abraxane is working but the cumulative side effects of fatigue and neuropathy are taking their toll. Hence the decision to go from 3 weeks on and one week off, to 1 and 1 wih the assurance that I can go back to more frequent treatments or as the oncologist said 'there are other drugs we can use' if there is progression. Life isn't the same as before MBC but I am retired and get to spend time with friends and family and try and appreciate every day [ there are days when I rail at the unfairness of my situation]. I hope you get some peace of mind from all the supportive contributors here and the oncologist finds your best treatment.
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Hi SusaninSF,
I have a video chat scheduled with Dr. Melisko on Friday. I wish that I had asked for Hope Rugo. I know that she is the physician that Dr Grant at PMC spoke highly of. She is well respected in our area.I think that if I do switch oncologists and my insurance approves it, I would want Dr Rugo.
I’ll post the results of my video chat on Friday.
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Grannax, that's wonderful news about the trial! When you get a chance can you post the link? Dee referred me to a trial as well but I think it's a different one.
I hope you are continuing to enjoy your break! School starts this month for our grandson, so we are trying to squeeze in a couple of more weekly visits. This Sunday, he and the family are coming over to play on the slip and slide my husband got and we're going to grill hot dogs and s'mores! Can't wait!
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Grannax2 - That's fantastic news about the trial! I hope it works well for you and kicks cancer in the butt! I'm newer to MBC (a year in), and it is so encouraging to hear that you have lived with it for five years! I don't have any grandchildren as of yet, but I'm hoping to be able to be around long enough to see that happen. I do have a grandpuppy though and we get to have sleepovers with him and I get to spoil him with lots of squeaky toys!
Kattysmith- slip n slide, hotdogs and s'mores, what a wonderful way to spend the weekend!
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Went for Y90 mapping today there was a new nurse she forgot to scan me before I left. Have to re do whole thing the 16tjh God is in charge.
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Good grief Nicole. Does no one have check lists for their work anymore?
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right husband!?!?! Though I had this weird uneasy feeling for a week wondering if I should wait another week to map bc of it having been so close to biopsy...the Father must have saw something.
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Nixie- I was on Ibrance/Faslodex for 3 1/2 years and had to take extra weeks off because of low white blood or ANC count. Since I've been on Xeloda I don't have the low white blood count or low ANC. While I don't have the low blood count I deal with the Hand Foot Syndrome which you just learn how to manage (with help from this website) when it pops up. The tiredness is mostly like a drug hangover when I wake up, not quite normal awakening but I'm better once out of bed. I do take an occasional nap in the middle of the day. I never did feel my liver mets. Right now nothing on the scans but markers rising quickly, since I have ILC it could be anywhere (last time it went to the small intestine). Xeloda has been working for 16 months.
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At this point I don’t know what to do or think. Went on a tamoxifen break to see if it would help my liver enzymes and they’ve only gone up. My GP is worried aboot me but also doesn’t know want the numbers mean for me and I’m terrified. My appetite is low and I’ve been walking around feeling like I’ve been punched in the stomach. When I laugh my right shoulder hurts and I know that in of itself can be liver related. But I’ve been trying to ignored that fact. Trying to get a hold of my oncologist is impossible and now it’s Friday. My mri is in a week but I don’t think I can walk around like this for another week without answers.
What the heck is going on ?
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BAP, why is it impossible to reach out to MO on a Friday? Is there a MO on call that could calm your fears? There should be someone in that practice that you can speak with.
At my clinuc, you can directly speak to triage RN when issues appear. Keep trying.
Maybe your MRI could be moved up sooner.
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The trial is NTCT02350676. It’s not the same one that Dee is on. Hers is not at my Cancer Center, this one is.
Lafsunshine. Sometimes, I can’t believe I’ve made it for five years. I sure didn’t think I would have that long when I first heard my DX.
Katty, keep having fun with your grandson. Hi, BevJen.
Nicole, unbelievable that they forgot to scan you. Grrrr
Yes, I’m still having fun on my break. I got to have a long awaited visit with two of my BFFS this week. They each have twin grandsons. We had a pool party. Tying to make the most of it. Labor Day weekend is our family trip. Can’t wait
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B-A-P: have you looked into N-acetyl cysteine? It may help with elevated liver enzymes caused by stress to the liver.
N-Acetylcysteine | Memorial Sloan Kettering Cancer Center (mskcc.org)
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Husband,
I have not, but I will certainly look into it! Thank you for the info!
Sandibeach- She actually called me back which is a shock. Usually when you leave a message they take atleast a day to get back to you and being friday, I felt like it would be Monday before I heard. So what she had to say was yes the AST and ALP have gone up, but the ALT had gone down and Bilirubin is normal. So she's not panicked. But in saying that she said we wont know anything until the MRI which she said she will try to move up but it will likely stay where it is on Thursday evening. She's also going on vacation for 2 weeks. She mentioned again that the CT we just did was good so that is encouraging, but if it is progression we will treat it and if it's not we will have to refer off if it still isn't clear. I told her it would be a lot easier if I wasn't symptomatic but where I am in pain and my eating is affected, it is causing me to be more worried. I know there isn't much more we can do until we have the report back, and she said I could always have my GP look at the report while she's away. If there is something worrisome they will have someone else call me. There is clearly something going on and waiting truly is the hardest part especially when I feel like garbage. Oh I mentioned the pseudocirrhosis and she said it's not impossible for it to progress but it is rare and as likely as progression (meaning she doesn't think it's either) . It's very frustrating,
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Hi all,
ARV471 Trial scan and plan on Monday. If all is good we move scan to every 12 weeks. Still going every other week for bloodwork. I am hopeful for a good report on the cancer, but dealing with UTI, migraines, vertigo and random pains. My step mom moved to a hospice house for her pancreatic cancer. It was hard to deal with my emotions for her and my thoughts of an eminent future for me. Needless to say I am dealing with the usual scanxiety. Will let you all know the results. 🙏🏻
cure-ious I talked to Dr Hamilton about Arvinas partnering with Pfizer. She was somewhat involved in that process and said Pfizer is looking for a good hormonal backbone to go with Ibrance. Hopefully ARV 471 continues to work well. But it won't make the process to get to market any faster- trial protocols are lengthy.Dee 🦋
Edited-cross posting to clinical trials.
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Nixie - I'm super tired, but try to manage my days to include a 2-3 hr rest each afternoon. Also, I've dropped alot of things I used to do, but make time for seeing friends, playing w/dog & low-key activities. I tried xeloda for 1 mo (initial onc) and it took 6 weeks to recover from HFS. But....new onc said we might go back to that when this quits working, but she'd use a lower dose. I'd try xeloda if your onc recommends it. But be ready to call re:side effects (Hopefully, your onc would be amenable to a break or lowering dosage. My 1st onc had no flexibility, that's why I switched. Now I'm with a NIH affiliated cancer center with many more tools in the box than my initial Dr). I don't think the fatigue will go away, but as my tumors quit growing so fast, I'm able to manage it better and enjoy alot of thngs. Best to both of you.
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