How are people with liver mets doing?
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Scan update. After 11 weekly rounds of taxol my CT showsalmost 50% reduction in liver mets as well as the lymph nodes involved in the party.
I'm thankful and feel really good on this treatment. I hope this encourages someone just beginning this journey with taxol and liver mets.
I am currently being treated at the University of Chicago and I believe I'm receiving excellent care. However, I have an opportunity to be seen at Mayo Clinic later this month. I didn't think they would actually see me since current treatment is working. I don't want my current oncologist to think I'm questioning his care. I'm quite fond of him and don't want to step on his toes. Mayo says he won't know but I know there is that "eagle eye view" all docs have access to right?
Taxol is working. Am I just adding stress by going to Mayo? Your advice means so much to me so thank you!
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Chicago. That's a tough decision. I probably would stay with who I like and what's working. But, that's just me. If you say no to second opinion for right now does that mean you will not be able to see them at some other time?
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Rt_Chicago... to me, any good MO would never mind that you are getting more opinions. We have Stage IV cancer...if it was them or their family member that had it I am sure they would get other opinions.
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Chicago-- Do not hesitate going to Mayo. When I was first diagnosed I sought a second AND third opinion. The good thing is they all agreed with the plan my home town MO had. Validated things for me. And I have told my home town MO that when I progress (we all will at some point) I plan on going back to one of the facilities I visited before and review the new plan with them. The MO totally was on board with that. Any good MO will not be upset with you wanting to hear other opinions/options. And if they are offended, get rid of them. This is your body, your life. No place for pride issues from the docs.
Also you can review your current status with Mayo AND get more info for when things change. I like a Plan B.
Keep us informed of how things go with Mayo and continue asking questions. KNOWLEDGE IS POWER.
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Wow, RT, that is fantastic news! And I agree, go to Mayo. Tell your MO you're going just to have future options in your pocket!
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Question for group------ Anyone on blood thinners for history of blood clots, etc.???? Anyone on Coumadin???? I am probably looking at starting a blood thinner, probably Coumadin. I cannot ask my MO about it right now (long story). I am wondering about blood thinner use and liver mets. Is one blood thinner med better than another with liver mets. Thanks for any advise.
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Hi Candy, I am on blood thinners due to multiple DVTs and PEs. I’ve been on Eliquis since 2016; the entire time with liver mets too. I havent had another clot since being on it. My only side effect is that I bruise easier. I’ve been on coumadin in the past too, and find Eliquis much easier- coumadin requires blood tests to ensure appropriate dosing and things like eating too many greens can throw it off. There is also a co-pay card available for Eliquis which reduces the out of pocket expense
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Candy, I haven't been on coumadin since I have had mets but was on it when I was diagnosed with early stage due to DVT a year before dx, caused by the cancer. There are some chemos that may require close monitoring, dose adjustment or discontinuance of the coumadin if the chemo impacts your blood counts. I don't believe liver mets should be a problem unless one has major liver function problems impacting PT-INR, prothrombin time, and the other clotting factor tests. I think most people take Eliquis now in general, cancer or not. Your MO may want you on that versus coumadin due to the fact it does not impact PT-INR and the other clotting factors to the same extent/in the same way, which makes it safer in that respect.
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JFL-- Since you had a DVT caused by the cancer before, doesn't your MO want you are a thinner now to prevent further clots? I have read that cancer patients are 4-5 times more likely than the general public to get blood clots. And you have had one.
Jamiemarie---- Since you are on a blood thinner and have liver mets, has your MO ever mentioned anything about the liver lesion being at a risk of starting to bleed? I don't understand all this, but I worry that if one is on a blood thinner and have a liver lesion and the liver being so vascular that the lesion could start to bleed.
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Hi Candy, I dont recall him mentioning the possibility and lesion bleeding. I do remember him saying after I had been diagnosed with my second PE just six months after second DVT that it was imperative to be on a blood thinner. That if I didnt, it might be a blood clot in my lungs or traveling to my brain that kills me, not cancer. I havent had a clot since starting eliquis. But thats an interesting question about risk to the tumor. I’ll be interested to hear if you get an answer. I see my MO next week and I can ask her too and report back!
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Jamiemarie---- Yes ask your MO and let me know !!!!! I wonder about the difference in blood thinners---is Eliquis safer with liver mets than the others. Is one thinner worse for liver mets.
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Candy, I generally am on the take baby aspirin for life plan. I had the DVT in 2005 and was treated by a hematologist and then a hemotologist/oncologist when I was diagnosed with early stage BC. Both of those doctors recommended a baby aspirin but neither thought it was necessary to remain on blood thinners. I don't know why. I have had various drugs and side effects that have made it impossible to stay on baby aspirin at all times due to bleeding risk or gastro issues or something else. However, I try to keep on it as much as possible.
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Hello Everyone
My solidary liver met of 10mm grew to 14mm on my second ever Pet Scan. I take Ibrance and Arimidex daily.
I am scheduled for surgery during July. Has anyone had surgical removal of solitary liver met? If so I welcome any and all advice on what to expect, recovery time and how did you deal with emotions during the time leading up to all the preparation time
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Hi AMP47, I just had laparoscopic liver resection for a single 1.6cm liver lesion two and a half weeks ago. I think recovery depends on the location of the met and whether the you have open or laparoscopic surgery. Here's my experience. I was uncomfortable enough the first week to take oxycodone. The second week, I was able to move on to Advil every 6 hours. The incisions were not painful at all. My right side hurt where they resected the liver tumor. Also, my right shoulder hurt from the gas they inflate your abdomen with. My biggest piece of advice is to do your very best to avoid constipation. Drink water, take the stool softener, duralex, Smooth Move Tea, etc. I became very constipated the first week which I believe put pressure on my liver. Once I was able to pass a larger quantity of stool, I felt much better and moved to Advil. I would definitely have the liver resection again. Very best wishes for a successful surgery and quick recovery! Theresa
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I had laparoscopic resection of the single liver (2,7 cm) met in November 2017. They also did oviariectomy and gall bladdder removal at same time. I felt unconfortable for couple days, took analgetics may be for two days afterwards. After one week they took stiches out. I was practicing yoga after one month. So I had very good recovery. The best thing is that in April 2019 my liver was still clean. I took exemestan (aromasin) from the time they found the met in may 2017(before that I took tamoxifen for almost 4 years as adjuvant treatment). The met grow on the exemestan from 2 cm to 2, 7 in 6 months.
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AMP47. Wecome, sounds like you have a good plan and expert advice already. Glad yours is operable. Mine was not but I did have Y90's. On Xeloda now, hopeful it's working.💞
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Teresa45
Thank you for all the information!!
One of Ibrance side effects is constipation. Today, I started a stool softener for sure. Being sore in that area would be very painful during the healing process. Good to know about the gas causing some discomfort in the shoulder.
Why did your doc choose laparoscopy instead of other treatments? I meet with 3 doc’s on the 3rd of July to discuss the removal of the tumor: interventional radiologist, liver surgeon and my oncologist.
I have studied the different treatments so I can ask question as to how is the surgery performed and which method will be used and the reasoning behind their decision?
Maaaki - Helpful to know your recovery was good. I hope to get back to swimming again - soon.
May I ask why they removed the gallbladder??
Grannax2 - did your doc use one of the other treatments on your liver.
Thank all of you women for responding to my post. I don’t feel as anxious about this journey as I did. There have been many days since March that I have had to take a Xanax.
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AMP After 3 months on I/L my liver mets were still very active but lung mets stable. Therefore, I had y90's for lots of mets in both lobes and stayed on I/L for two years that combo worked. I had progression in December, failed AA, changed MO, on Xeloda since March. I will find out in July if X is working or not. I will explore another y90 at some point but not yet. I have too many mets to have excision.
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My IR, says the location of mets makes me not a candidate for ablation. If I do get to have another y90, I will have to go off of X because it's a chemo, not targeted therapy. I will have to be re evaluated by I R after my scan in July to see if I'm a candidate for another y90. Everything hangs on the results of my PET on July 12. If it's not working, IV chemo may be the best TX because I have lung and chest mets, too. It's a waiting game.. ...grrrr.💞
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(Cross posted in TNBC stage IV and are you currently (or have you been) in a clinical trial threads)
Hi everyone. Posting here because this group's collective knowledge and wisdom is incredible. Hoping some of you may have some nuggets of info or suggestions that will guide my next step. I've included a brief history at the bottom of my post, in case that's helpful.I just found out that Gem/Carbo is no longer working. My PET/CT shows two new liver tumors and previously inactive or less active bone mets are very active again. My cancer seems to behave unexpectedly and aggressively, so I want to move onto a next line quickly. I didn't start chemo last week, as I don't want to jeopardize my eligibility for a trial, should I find one that is promising in the next few days. My questions:
- For those of you with TNBC liver mets, what chemo did you use as a next line after Gem/Carbo? Was it successful? It seems consensus is that I should do Eribulin (Halaven) next. Experience with that? (And did you lose your hair?)
- Anyone know of any interesting immunotherapy trials? I am not currently a candidate for the NCI CAR T trial, as my liver met is not easily resectable. I am looking into both the MSK CAR T targeting mesothelin and the Fred Hutch CAR T ROR1 studies. What am I missing? I don't want to do any PD1/PDL1 drugs due to a MDM2 mutation I have that is associated with hyper progression on Keytruda.
- Other ideas? My current plan is to biopsy before starting a new treatment, but I will find out this week what the wait time for a biopsy is.
Brief history:
- Dec 2016 diagnosed (just postpartum) Stage 3 ER/PR+, HER2-
- AC - Taxol. Mastectomy. Radiation + Xeloda (as radiation enhancer). Ibrance/faslodex/lupron (due to remaining live cancer at time of mastectomy)
- Jan 2018 2 liver mets. TNBC
- Gem/Carbo got me to NED by April. Scans clear July and Oct, so I stopped chemo.
- Jan 2019 cancer back in my liver and spread to bones.
- Restarted Gem/Carbo. April scan showed metabolic resolution in liver. All bone spots less active or inactive
- This week shows 2 new liver spots and bone spots active again
Thanks so much to anyone with an idea to offer. This group is incredible
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What is TNBC???
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Hello All, I am the Concerned Husband of a beautiful young woman with MBC . She was diagnosed almost 5 years ago with stage IIIc , and then recently around 10 months ago with stage IV to the liver. At the time, they weren't even sure it was cancer until after the biopsy and the ONC said he'd never seen it appear like this before. She was started on lynparza which worked well for the 10 months but now it has progressed . He started her on Xeloda, but says hes only giving it 2 months to prove effective, shes only been on it a week. My question is, her eyes seem to look discolored, like maybe jaundice is setting in. From the posts I've skimmed through , jaundice seems to be very bad sign and most pass shortly after this symptom. Can anyone can confirm whether or not this would be true as her ONC was optimistic and gave no indication that things were this bad. I'm now getting the feeling he's not telling us everything.
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I'm sorry your wife is going through this liver mets thing. Welcome here to ask any and all questions. I don't know the exact answer to this one but I do for lots of other ones. I've had liver mets for 2 1/2 years.
Do you have a copy of her most recent labs ? If she is jaundiced it would show up in her liver marker labs. Ask the nurse to explain which ones. But, even if they are a little high that does not mean you're close to the end.
How many tumors mentioned in the reports? How large/ active are they? I h ave multiple in each lobe. Recent progression in December, after 18 months of inactivity as a result of local treatment called y 90. Do some research on it and consult with Interventional Radiologist.I'm on Xeloda too, finishing my fourth cycle. Look on the Xeloda thread, many really well on it.
Try to get direct answers from the MO. But, there will be many here who can comment on your concerns.💞
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Hi Grannax, thanks for the reply. They never mentioned any specific lesions or sizing, but rather spread so maybe diffuse mets and described as cirrhotic . Her blood work was a couple of weeks ago and slightly elevated but nothing severe , not sure of exact numbers. Her MO never gets real specific , at least when I am there, just says things are a little worse or looking better , shows the scan but I have no idea what I'm looking at and talks about the future plans . She complained of similar symptoms to the first time she was DX with liver mets but was dismissed as maybe the meds are causing it, plus her TMs were only up 1 point from 27 to 28 at the time. 2 months later, as he backed her scans up because of great progress with the Lynparza , MRI showed progression and TMs to 38. Her Liver is also enlarged along with her spleen. Only seems to be her eyes slightly discolored, but this has me worried things are worse than he makes it sound. Her current Xeloda cycle is 1 week on 1 week off , 3 pills 2x a day.
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That sounds so frustrating. Do you ask for her scan reports, lab reports and pathology reports. Or, are you on a portal with her MO. Most MO at Cancer Center are good with patients expecting to have a copy of all their records.
I'm wondering why he put her on I lynparza. Do you know her receptor studies from biopsy report? For example my tumors are ER +PR+ HER2-. So that indicated what TX I should be on. I don't know where you live but I think it would be good to get a second opinion. A good MO should never be offended by this.
Hoping you get some answers.
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Gracie, I went to the ER 3 times because I couldn’t get my pain under control. I consider myself to have a very high pain tolerance, too! The first time I saw a surgeon and he saw a problem with my gallbladder and removed it the next day. I kept having breakthrough pain and they would treat with IV morphine. It doesn’t last long, but it was enough for me to be able to rest. After 5 days they released me. (Wednesday) Uncontrollable pain on Friday so the surgeon asked me to come back and they readmitted me through the ER. 2 days until they could get my pain under control. Monday, same thing. After that I started to manage on my own.
I put on 40 lbs of fluid which I am sure contributed to the pain. All of the doctors agreed it was from the Liver Mets so they changed my diuretic and upped the dose. I finally don’t look like I am carrying quadruplets!!!!
Much love, Rai
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So she is on a portal and I just read the report. As the description of the liver sounds terrible, with many gigantic words I can't even pronounce, the AST/alt are 247 and 147 and Billi is at 1.6 . Her receptor status had changed from er/pr + to triple negative.
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Hi LisaMarie, the liver enzymes are on the higher side, which could be due to many reasons. On the patient portal you could ask the MO about the elevated liver enzymes and what it means. What were the enzyme levels before starting the treatment? To know if the treatment is working, the trend in these numbers is more important than absolute numbers.
As Grannax suggested, it doesn't hurt to get a second opinion. Hope you get your answers from her MO. It is frustrating when the MO doesn't explain in detail.
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LisaMarie, the liver enzymes are high but those can turn around with effective treatment. Mine were high like that a few months ago when I was on a treatment that wasn't working and was toxic on my liver and are now back to around or within normal range. I believe the bilirubin level you mention is slightly elevated but only slightly. Bilirubin backed up is what causes jaundice. Sometimes a bile duct may be blocked by the cancer. I would be surprised if she is jaundiced from such a small elevation. ILC can be tricky and sneaky and harder to identify. It does tend to present differently that IDC. What I would be the most concerned about is the description of her mets as "cirrhotic". I suggest you push her doctor more on that aspect to really understand what he/she means. Sometimes breast cancer or treatment for breast cancer can cause cirrhotic-looking changes in the liver where fibrous scar tissue can build around the diffuse mets or the overall shape of the liver can change so it looks more lumpy on the edges, rather than smooth. Or, sometimes the diffuse mets themselves can simply resemble cirrhotic changes without actually being cirrhotic. It is important to understand what is going on there.
I had great results with Xeloda a few years back. My liver was 70% mets, mostly diffuse, when I started Xeloda and all of the tumors were 100% inactive and shrinking by my first 3-month PET scan. I would warn you, however, that my tumor markers, liver enzymes and alkaline phosphatase all spiked for the first 4 months when I started Xeloda. I think all of the dead cancer cells in my blood stream were causing those levels to spike. By my bloodwork alone, one would assume the treatment was not working, while my PET scan showed no metabolic activity in the cancerous cells. They went dormant and stayed that way for over a year. I would suggest she have a scan before her doctor makes a determination of whether Xeloda is working or not. Good luck and keep us posted.
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First I would like to thank you ladies for your replies. Your information is very helpful and I will note some of these things for her to ask her MO when she sees him in 2 weeks. I do know that he doesn't like her to even read the reports as the techs describe things that sound worse than they are and He tells her to just listen to what he has to say and what they will be doing for a plan. She was scanned and had blood work about 3 weeks ago now before starting Xeloda, so possibly the Billi has gone up causing her eye discoloration. He said he needed to send her original biopsy out to see if it has PDL1 attachment which would qualify her for some specific chemo regiment, but said this could take up to 2 months and didn't want her sitting around with no treatment, hence the start of X. I know her MO was watching out for the scarring or fibrotic action as the cancer was dying the first time on lynparza. So after reading through the report , I gather with the original scarring and new mets , the liver does not look so good and may be impaired. My other concern is He's only giving the X 2 months to see if its working. Is this even enough time to evaluate, and or because shes running out of time to get something that works. Her liver enzymes and TMs were all good prior to this last test when on lynparza which was around 4 months ago.
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