How are people with liver mets doing?
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max otto. I had never heard of that. Certainly wasn't warned prior to y90. Sounds like info that should be available. I'm glad you are stable now. What were the symptoms of it? How did you finally get the DX?
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Grannax, Symptoms are fluid accumulation in the abdomen (ascites). This developed about 5 to 6 months after Y90. Generally the cause is alcohol related, but cancer is also a cause as it is in my case. I have had two parencentesis and the fluid is not malignant , , currently on two drugs for fluid build up and they are working. The heptalogist indicated adding another drug depending on the scans. I think adding a liver specialist who is familiar with BC Mets is a good idea, I wish I had done it sooner.
Recently, last week I lost another friend of many years to heart disease and I will miss her.
-k
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Darn Kathy that is scary. I am doing a few natural things for the liver that you might be interested in. Lemon water, milk thistle, radishes. And lots of citrus fruits.
I finally got a call from the hep dept and an appointment for March 14. Now that the ascites are gone I guess we can assume it was due to cancer, so it might be a waste of time but I'm going anyway.
Gran I'm glad the biopsy went well and it's over with! Hopefully it will give some good info.
I'm doing well on abraxane except I sleep all day on Saturday. Not sure if I'm that tired or just lazy or even half depressed. House becomes a mess then I usually get it cleaned up Sunday.
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HLB just be careful with milk thistle as I was on it for years and my pharmacist said it can cause the liver to metabolize chemotherapy too quickly. She put me on Glutathione which is actually used in the cancer setting.
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Thank you tennille, I actually did stop taking it when I started the abraxane. I'm wondering about glutathione. I was taking NAC which turns into glutathione, but stopped that as well bc the book I'm reading right now mentioned something about cancer using glutathione. So confusing. I will have to read it more closely because everything else I've heard says NAC is good to take.
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Hi Kathy. Nice to hear from you. I am sorry you have RILD. How was it discovered and how long after Y90 did it develop? What are the symptoms? Your Y90 was fairly recent. Sounds like you have a good team taking care of you.
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I was wrong about the glutathione. It's glutamine that should not be taken bc sometimes cancer uses it to grow.
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Today is the day I start AA. Ugh. Happy New Year to me. I just hope it works. I have heard from a few ladies on the AA thread who have had no SE! I want to be that person. I'll let you know how it goes.💞
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Grannax, I am thinking about you today. I hope that A/A combo is nasty and mean to the cancer cells and kind and gentle to you. I want your next scans results to be excellent, and I want you to suffer no intolerable SEs. You are in my prayers. May 2019 be your best year yet. Happy New Year.
Hugs and prayers from, Lynne
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Will be thinking of you today Grannax, and praying AA is easy and kills those mets!!! I start back in Abraxane next Monday.
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Gracie, Will you be having a lower dose of Abraxane? I hope you see excellent results without significant SEs, too. You are also in my prayers. I look forward to sharing a good New Year with you.
Hugs and prayers, Lynne
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Lynne, yes, he’s dropping it by 25%. Hoping that will keep me on it long term.
Happy New Year!!!
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Thanks 50's me too. I took the first one last night. Gracie I hope your SE are better w the reduction of Abraxane. I took A way back in 2010, for my third DX of BC. Except for my hair, I didn't have too much trouble with it.
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I'm having my liver bx on Thursday. My local onc decided to change my chemo start day to next Fri instead on thei Fri. Just in case there are complicatoins.I have to be there for 6:30, that means a 4am wake up call (it's rush hour to Boston) to leave at 4:30, I don't need the stress of getting thee on time. I like to be a little early. Plus it sounds like a maze at Brigham and Women"s. I have to stop at admitting and get bloodwork. Then I take the M elevator to L1 and look for the MRI CT signs. Lots of lefts and rights, and then you'r there. Plus we have to find the parking garage.This will be mapping my tumor out to see it's changed and for any trials. I am starting Gemzar next Fri and will be on it until it stops working., then do the HER3 trial, then do Navelbine. Hopefully, something works.
I've been feeling pretty lousy for a month. Constant diarrhea (which I have a prescription for), sternum and upper chest pain, coughing quite a bit and hard time sleeping, and I fell on my but (a graceful one). Now my lower back is also hurting. Hubby is back at work tomorrow and Fri. He was at work yesterday too, and after I got myself off the floor by grabbing the frame of my bed and my daughter's walker (she got last year after wiping out and spraining both knees). At first they gave her crutches. She had 3 strokes between 1 1/2 and 2 (found out it was caused by Moya Moya), one stroke left her with a left sided weakness but you can't hold her back , never could, she's now 31. So sick of this disease. 2 months and 2 weeks without chemo. All I can think of is the tumors getting bigger and getting new ones. This is the longest I have gone. It was waiting for all the appointments in Boston. I'm holding out until Thursday, to see if they see anything while they are in there.
Happy, Healthy, and Prosperous New Year!
Lynne
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ann1999 - hi I'm in Iowa and have been to mayo for a third opinion. Could you tell me more about your trial? I'm Er+ pr- her2- and have bone and liver mets. My liver was pretty full and I'm now on ac chemo with prob two more rounds to go, So about two more months. I'm interested in anything you can tell me about the trial or what requirements are for it. I know the doctor at my time at mayo last July was really excited to put me in a trial but then liver was to bad to risk trials. I'm looking for my next route when I'm done with This chemo.
Thanks for any info
Sara
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Lisajo - when I had high bilirubin (I got to the 16-19) in March this year, my MO put me on CIsplatin, which she explained was the only treatment I could have with my Bilirubin so high. After one dose,three weeks later it was down to 2.5. It works through the kidneys and needs lots of hydration when given. See if this chemo would be good for you. Prior to taking tthe Cisplatin I had a Stent put in my liver, but this didn't deal with the blockage (found by ultrasound) I'm now back on Cisplatiin as it was a drug I tolerated well see below!
To all on the tread - I am wishing you a successful and comfortable 2019. I am feeling a lot better after my shenanigans with blood and other levels going all over the place. I found tolerating many chemos really difficult as I could not keep up with weekly doses. and I am now back on Cisplatin. After my first dose I felt better. My liver still feels enlarged but definitely better, my liver markers are down and I have a lititle more energy (also probably due to a blood transfusion as my hemoglobin was low) I've just had my second dose and next MO appointment we are going to see if I should add Immnotherapy to Cisplatin.
I've had a lovely Christmas and New Year with my boys home from college.
Best wishes to all
Sarah
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Lynne. I just had a liver last Thursday. Believe me, once you get through all the maze and pre op stuff, the actual BX is a breeze. At least it was for me. They used ultrasound to find it, then put me to sleep with propofal. I don't remember a thing. It was easy to wake up and I did not have one speck of pain at the site. I, too, am hoping my tumor has changed from the one done two years ago. Maybe even guide us to a better treatment. This is just my second line TX since IL recently failed. I'm on AA until and if the BX shows something different.💞
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All the ladies who have had Y90, did you have any post procedure bloating? I am almost 8 weeks out and in the last 2 weeks have had bloating and a tightness when I breathe even though chest is clear. Urine also has an orange tinge even though I drink lots of water.
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I don't remember having any more bloating than I had before the y90. You probably should get that checked out.💞
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Tennille, you should get your symptoms checked out. I didn't have noticeable bloating more than a day or two after treatment. Dark or orange urine can be associated with liver issues. I do know that there can be swelling around the treated tumors which is common in the first 6 months or so. They increase in size before they shrink. I had that issue show up in my scans. The tightness may be from swelling around your lesions if you had a lot or there were particularly large.
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Sarah, it's so good to hear that you had a lovely Christmas and are doing better! Happy New Year!
Katty
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Sarah, I'm so glad that you're feeling better and you had a lovely Christmas and New Year with your boys! That's so nice to hear! Wishing you a successful and comfortable 2019 too.
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So it turns out I have ascites. No drainage of fluid though just diuretics LFT'S are through the roof. I seriously hope it's the SIRT (y90) doing its job because right now I am terrified.
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I can just imagine, I would be too. Maybe they try the diuretics first then drain? I hope you get relief soon.💞
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Tennille you might want to talk to Max-Otto. She has something called RLD. Evidently caused by y90. She now has a heptologist to help treat it. I hope it's not that but you might pick her brain a little to know what the symptoms are.💞
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RILD it's radiation induced liver disease.
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Tennile, JFL, Grannax,
My initial fluid was detected after a MRI scan, the fluid buildup began about 6 months after Y90. IF it is ascites there are drugs for control, mine are furosemide and spirononlactone. My only physical symptom was not being hungry. The fluid presses down on the abdomen and you feel full. If the doc orders the fluid test for malignancy, be sure they use a full liter. This doesn’t mean for me that I’m free of ascites, I will have a better idea later this month.
My view of the liver is don’t wait, see whomever can give you answers. Sometimes, I’m not especially fond of the answers, but at least I know and can think about what to do next.
Kathy
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Tennille,
Y90 affects tumor lesions and mine are (at present) necrotic, but doesn't prevent new ones. Ascites affects liver function which is why I included a heptologist in my medical treatments.
-k
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Update on Lisajo6. Lisa was taken to the hospital yesterday. I received a note from her daughter that the doctors found no obstruction to her liver and she is in liver failure. Her Oncologist stated there was nothing else that could be done so they are trying to make her comfortable. Please keep Lisa and her family in your prayers. It’s heartbreaking.
Katrina
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Katrina, Thank you so much for posting the update on Lisajo. I know that she thought she was headed to hospice when she last posted, but this news still brings me sadness and shock. I will pray for comfort for Lisajo and her family. If you speak to her, please let her know she is our thoughts and prayers
I hate cancer more and more every day.
Hugs and prayers from, Lynne
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