How are people with liver mets doing?
Comments
-
Hi All,
Question for those of you who have had a liver biopsy - what should I expect? The Cancer Agency called with my appointment time and all they told me was when I needed to be there and that I was not to eat or drink for six hours prior. I know they use local freezing in the area where they insert the needle and that it's guided by ultrasound but am I able to drive myself to the appointment (and more importantly... drive home)? Will they hook me up to an IV? The reason I ask that question is that I have a port with a heparin lock and realized yesterday that I need to have it flushed next week since I've been off chemo. Not sure if I need to flag this with the Agency. I'm not nervous, just unclear of what the procedure entails. Any info you can provide to help me prepare would be appreciated.
Moth, a question for you. You mentioned sore feet/hands. I have been on two back to back treatments that have the potential for peripheral neuropathy but was watching for numbness and tingling. I had noticed that my feet were a bit sore, like I had been standing for the best part of the day. Is that also a sign of neuropathy? Off treatment now and likely to go back to Xeloda so it's not really an issue at the moment but curious.
0 -
SS, I was sorry to read about your progression. And I want to wish you good luck with your liver biopsy. I had two for the trial I'm on & I don't remember the radiologist needing my port. He did a local, a couple of times as I could feel it but honestly it wasn't bad at all. I can't remember if you're at Vancouver centre or not, but if you are, they take you from the third floor where they do the procedure & then take you up to the 5th floor for recovery. They will want to to lie on your right side putting pressure on the site. They will lightly feed you, yogourt etc. The RN's there are great, especially if you get Michelle.
You shouldn't have any problem driving yourself home as it's just a local anaesthetic & they won't spring you til you feel ok. cheers, dee
0 -
sadie, I haven't had a liver biopsy but I've cared for a pt who had. Their biggest worry is a bleed so you stay for quite a while after and they keep your bp cuff on you & take very frequent vitals. Bring your phone or a book. You have to lie on your right side. My pt had a saline locked IV & I'm pretty sure they will want venous access - either a peripheral or your port because if someone is starting to bleed they need immediate access. They NPO you in case they need to go in to deal with the bleeding. My pt was sore. I think doing a lot of turning your torso might hurt but if it's an easy drive home I think you'll be fine unless they decide they need to ativan you...
re the neuropathy, mostly mine feel kind of bruised and achy. Mine is limited to my toes, not my whole feet & the tips of my fingers. Sometimes the pain is more burning like if your feet get too cold in tight skates and then you take your skates off and the blood comes back & it burns?
Could yours be related to a bit of fluid retention? That achy heavy feeling in feet makes me think of that. Even a mild edema that's hard to see can trigger it & liver abnormalities which drop your serum protein trigger fluids leaking out of the venous system.
0 -
Are any of you signed up at BreastCancerTrials.org?
They send out frequent updates of clinical trials relevant to various subtypes of breast cancer. Mostly US trials.
0 -
SadiesServant,
My livers biopsies were done with twilight type meds through an IV. Afterwards, I was supposed to lie flat for a few hours for observation but did get some cookies and ginger ale. Because of the twilight meds, I was instructed to have a driver for going home. Hopefully others will give their experiences too. I hope the biopsy gives you helpful information. This liver mets life is not easy.
I had my first infusion chemo treatment on Monday, GemCarbo. I'm feeling pretty normal, thanks to the premeds, I think. It's been a while since I've had any treatment for my liver mets, with all the attention going to my large spinal lesion with surgery and radiation, and weeks for healing in between. I hope my growing liver mets will respond to this.
0 -
Sadiesservant- I have had 2 liver biopsies. The first one at diagnosis. Boy that seems so long ago--2017. I did need a driver, as they gave twilight meds per IV. I had to be monitored for a couple of hours after (for bleeding potential)-- frequent vital signs and nurse monitoring. They gave me a snack. I was sore a couple of days after. Small dressing over incision. Not too bad.
The second biopsy was a different story!!!! It was last Spring. Different facility. The IR poked and poked. He could not get a good sample. To his defense, he said we could stop and try again another day and I said to keep trying. I was on the table 3 hours!!!! I had a small bleed and they had to apply pressure. I was not given any meds so I felt it all !!!! I ended up with a pulmonary emboli (blood clot in the lung) a few days later.
I think you will do ok. I don't want to scare you. My last experience was not the normal. Usually it is pretty easy. You will have an IV though, probably twilight meds, monitored for a couple of hours after, and need a driver. And expect soreness for a couple of days.
0 -
Is anyone following Liza AKA LFF on Caringbridge... I am and its not looking good
. She was doing really well last week and was even getting up and walking and now her husband said she is extremely tired and sleeping all the time and that its not looking good Im so sad for her and her family if any of you pray please pray for her family and her.
Husband: I think I was signed up but I never get anything now? Thanks for posting it
0 -
SS - my liver biopsy was my initial BC dx. I had twilight meds, so no driving home for me. They had me lie on my right side for 2 hours. They injected (?) some kind of expanding something to add pressure for bleeding, which I think contributed to my having more pain than they expected. As a result, there wasn't a scrip ready for pain meds, and it took awhile to get them, so that was the worst part for me. I'm blaming it on the twilight meds, but I have this mental picture of expanding foam being injected. Lol. I don't remember much pain or discomfort afterwards.
0 -
SS, I never had sedation with my Liver biopsies. I'm jealous of those who had lol. I was in quite discomfort after. I am Small so it appears that my capsule was irritated. That being said, I was not fit to drive home from my discomfort. Everyone is different but if you have the option of having someone drive you then I'd do that.
My bloods were done again and mt AST and ALT went down a smidge from last week which is good. My ALP went up a bit which i dislike. My bigger concern is my Bilirubin. It is still Normal but it's gone up 3 points since last week. it was 14 and now it's 17 ( i'm in canada which is why the numbers may look different to how the labs are in other places) . Abnormal is 20.5 and above so I feel like I'm walking on a tightrope. I'm doing my best to tell myself that the drops are good and that it's *still* normal, and these things fluctuate. With my vomiting episodes and what not, it just makes me nervous. It's very much a reminder of last summer and I just don't want to deal with that again. My GP said my upcoming scans will give a better picture to see if cirrhosis is progressing or if there are blockages. He's not too worried about the ALP just because it's not even double the normal so I think he feels like it could be anything. Hoping it's not progression already. I had such great results with my first 3 cycles of Ibrance with NED almost immediately when on it, that I can't have it just fail after 6 .
Still feeling a little off in the light headedness so my MO ordered a brain Scan just to be safe. That can also be anything and one of my med side effects is just that. But i've been on it since sept. You'd think it would have happened before then. Better be safe than sorry. The scans can't come soon enough.
Scope tmr so theres that to check off my list.
0 -
Nicole, Yes, I’m following Liza (LFF) and I was very sad to read her husband’s latest post on Caring Bridge. He’s waiting to see if she’ll rally again, so I’ll wait and see, and hope too.
0 -
Thanks Everyone! You are so helpful, as always. Given the varying experiences, I thought I better play it safe so have asked my neighbor for taxi service. I doubt that I will need sedation (I was fine for the port insertion) but better safe than sorry. Good to know that I will have to stay there for a couple of hours. Lying on my right side I'm not looking forward to... right hip gives me issues and my right shoulder/arm is a disaster right now for some unknown reason (I am worried it might be something going on with my brachial plexus) but we'll cross that bridge. I'm in Victoria so not really sure where they will take me. All I know the procedure is in imaging (ultrasound).
Thanks again!
0 -
Gutting news tonight - LFF is transitioning to hospice care
0 -
Moth yes...I just read that too.
0 -
So very sad to read this about LFF. 😢
0 -
SadiesServant, you are in my prayers that everything goes without complications or pain in the biopsy.
That is very sad to hear about LeftFF.
0 -
She's been on Xeloda for over a year. Was pretty tolerable until the last 2 months. Socks actually seems to help and she does a pretty intensive regimen of daily foot care.
Forgive the delayed reply...the new message boards here are a bit wonky. It said my above post failed, so I didn't even think my observations were posted.
0 -
I’m so sad about LFF. Sending prayers to her and her family.
0 -
My heart is broken by LFF's decline. She has always been so strong-willed and smart. And I keep hoping that those qualities will bring her back to better health. We met in person when she was on a trial at UCSF. My heart swells at that happy memory. We had this instant connection and I have loved her dearly ever since. If anyone can make it back, it's Liza.
0 -
Oh no, LFF... We pray for her and her family. I still hope her body and mind can turn things around. Saulius
0 -
thinking of LFF and hoping for good news- have also been following her on caring bridge
0 -
Well, biopsy done. It turned out to be a fine needle biopsy rather than a core biopsy so I was in and out relatively quickly. They had the pathologist in the room to make sure the samples were good. Radiologist was very sweet. Kind man and a great communicator so it was pretty much painless with the exception of an unpleasant sensation that flowed into my back on the third try. I was glad it was done as I think that lesion was considering fighting back.
0 -
Pleased to hear it went well Sadiesservant.
0 -
Sadiesservant- I'm glad it went smoothly for you. Hopefully it will yield actionable information.
0 -
SS,
So happy it was painless and quick. Will you be getting genetic profiling done on the sample? Going through trials again, there are lot of targeted therapies. You would need to have your profiling info to know if the trial might work for you.
I am trying out a trial screening site, breastcancertrials.org, and some, like this one: https://www.clinicaltrials.gov/ct2/show/NCT0438321... have sites in Canada.
Hugs, Susan
0 -
Sadiesservant, glad to hear that the biopsy wasn't too traumatic. I hope it gets you some answers.
0 -
hi all I have a message here that Alabama Dee asked me to relay to you all. Let's please pray for her.
Hi!
My MO and hubby and I had the talk yesterday. My liver is so involved that he felt the need to warn us. While it is functioning now and we can continue Erubulin to see if it can kill down the widely diffuse numerous tumors, the liver could go into failure at any time.
I am not giving up on a miracle. I still have hope, but I am facing reality too. I will be starting palliative care for symptom management (lots of liver capsule pain from the enlargement). Weakness from chemo and recent UTI is an issue too.
Hubby and I have 5 wonderful adult children, with many special events this year that keep us going. One son is graduating seminary in May, another is graduating trade school, my oldest granddaughter turns 6 soon and my youngest turns 1 in August. Hoping to get a beach trip in June.
We are at peace and enjoying each day for the gift it is.0 -
Oh AlabamaDee, I'm sorry to read your update & I hope that you stave off liver failure for a long time.
Sadiesservant, glad the biopsy is behind you & wasn't an ordeal. Hope the results & the treatment plan follow quickly.I got my CT scan results & they're not good - new growths in both liver & lung, plus a new suspicious spot on my kidney. This is after 3 cycles of Trodelvy. But there's a small chance some of this growth was during the 5.5 weeks between my last scan & when I actually started Trodelvy....so my MO, after consulting with some colleagues, recommended we try 2 more cycles & re-scan. According to the results of the Trodelvy Phase 3 trial about 1/3 of people responded to it, so it's possible I'm just in the 2/3s that don't.
0 -
Very sad to read this update from Alabama Dee. Thanks for posting, Nicole.
Dee is a fighter and I'm hoping that she will do a turn-around to get to her next clinical trial. Sending all good thoughts to her.
0 -
I’m so sorry to hear about Dee. She’s fought hard and I pray the Eribulin beats back those mets. My thoughts are with her and her family.
Moth, I’m also sending positive thoughts your way. It sounds like a good plan to try a couple more cycles when things are not progressing crazy fast. I often wonder how sure we can be about when progression took place with gaps in treatment and scans not necessarily well synced. I know it’s nerve wracking though. I’m counting the days before I can start something else since it’s coming up to four weeks since we stopped Eribulin. I’m am not afraid to admit that I am getting a bit worried with two back to back failures and liver progression that appears to be picking up speed. 🙄
Susan, we are holding some tissue for possible future genomic testing but, at present, there is nothing in the pipeline here that it would be useful for. We are primarily checking biomarkers to see if we can figure out if I’ve flipped. I know it’s a long shot but I’m hoping for HER2 low expression to open up some new doors. My list of options is getting woefully short now that it seems ER+ treatments are off the table. Fingers crossed!
0 -
Sorry to be MIA, we had a freak snowstorm windstorm which brought down power/telephone lines and killed all communications including landlines and even cell phones were screwed up until late last night.
SS, I so happy you had your biopsy done, glad it was a fine needle one so not much pain, hoping it gives some answers and maybe new treatment options??
Moth, glad you are going to try 2 more rounds. I am one of those who is slow on the uptake, my MO won't change treatment until we've done at least 4 cycles, but it's scary.
sorry to hear about Alabama Dee & LFF.
My TM's almost doubled 2 weeks ago, so I am pretty nervous about my CT on Tuesday, but I know that TM's can change due to other things, but they have always been so accurate for me, I am concerned. I was finally approved for the Hereditary Cancer Program. I did it 14 years ago as I got BC under the age of 50, but at that time they only checked BRCA 1+2, they now have almost 90 mutations to check. Not that it means anything if there is nothing actionable or covered but saves me from paying for F1. I had since discovered that both my parents sisters died of BC, but I have no idea what kind.
take care all, cheers dee
0
