How are people with liver mets doing?
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yay Candy ! That’s excellent! I’m BRCA positive as well. I wonder if I’d be able to avail of this if ibrance doesn’t work for me/I continue to have low counts with it.
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Dee so sorry that the report is so indecisive . I hate feeling like that.
Candy SOOO HAPPY for you..
So i had chemo today and guess what...YUP bilirubin on the rise again....1.7 now... started at 0.7. So she doesn't think its the Ivermectin...bc (I was right) if it was the ALT and AST would be elevated ...those usually go up with new meds or supplements. So that leaves 1 of 3 things... well to her 1 of 2...
1. Blockage (which we will know on Monday i have MRI
2. Progression...
or I think possibly Inflammation.....but she only mentioned back those top 2 when I asked about all 3.....
I am getting a little concerned bc if it is a blockage that is SOOOO SCARY and would require a procedure/surgery... and also if its inflammation this far out from the Y90 (it was done in June)...then could I be heading toward liver failure???
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Nicole, I understand that problems with the gallbladder can also cause elevated bilirubin levels. Will they image that on the MRI? A formation of a gallstone might be a cause.
A layman like me would think that if it was imflammation of the liver, the ALT and other liver enzymes would rise as well.
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Husband thanks for the input bc I was wondering if other things would rise if it was from inflammation. I did tell my MO that when I take the ivermectin I dilute it in 8ml of vodka it makes the med over 80% more bioavailable...but that is a minute amount and she didn't seem concerned at all...I also take it with grapefruit juice. ..... I just now that my pain is LOW...down toward the bottom rib, again..exactly where the Y90 was...and it only hurts when I take a deep breath...like when my body expands..(the liver into the ribs) if you understand what I mean...if I am just sitting no pain...walking no pain only when take a deep breath which makes me think its that the liver is inflammed...or like swollen? I don't even know if that is possible...but yea. the MRI is of Abdomen...so I think they get the gallblader....
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Nicole, is Eribulin okay with grapefruit juice? I avoid it completely, although I love grapefruit as it interacts with so many cancer meds. Just flagging...
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Sadie I don't know...but I am positive now that the elevation in Bilirubin is from the Tumor that didn't get killed completely in the Y90 in June. Otherwise all my other numbers would be elevated as well. I only take 3oz of grapefruit juice 1 time on Mon , Tuesday and Wed....
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You might want to check in with your MO or the pharmacy. It's only a small amount but grapefruit is typically on the forbidden list for most chemotherapies.
Many drugs are broken down (metabolized) with the help of a vital enzyme called CYP3A4 in the small intestine. Grapefruit juice can block the action of intestinal CYP3A4, so instead of being metabolized, more of the drug enters the blood and stays in the body longer. The result: too much drug in your body.
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I also avoid grapefruit juice. Any other juices seem to be fine.
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Pomegranate can be an issue as well but with fewer drugs. I can’t recall but think I was advised to avoid pomegranate when I was on Ibrance… I think.
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Congrats Candy! so happy for you this Thankgiving!
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So I have some good news! While I was waiting to start my trail on Nov 29th, I reached out to the OP-1250 clinical coordinator and showed interest in enrolling in the upcoming clinical trial. Clinical coordinator was kind enough to share the OP1250 early drug safety and efficacy. Looks good to me, seems like im enrolling in this
Link below to info sharedhttps://drive.google.com/file/d/1FklxhTXj4N3odFI2l...
Dee
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Dear Dee, what happened with the post? Dear BAP, how are you? Nicole, Shetland?
Saulius
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While my October scans showed no active liver mets, and the bile duct is working fine with no stents, the CT showed a narrowing of the transverse colon, that was biopsied via colonoscopy and shown to be caused by an ILC met. I had quickly developed symptoms of a pretty bad blockage, and am now recovering from abdominal surgery to remove the section with the tumor. But the surgeon noted "multiple peritoneal nodules along the peritoneal surfaces, bowel mesentery and on the intestines" so I need a good systemic treatment once I have recovered enough. Treatment is on hold right now except for Faslodex. Hoping genomic sequencing will be done next week and my onc and I can form a treatment plan.
Saulius, the mods said elsewhere that Dee's account was compromised, thus the deletions of posts that were not actually hers.
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Dear Shetland, glad that the surgery went well but so sorry some nodules have been found. Did the surgeon take at least one nodule for examination - they might be benign?
Aaa, account has been compromised, wow, sorry Dee:/
Saulius
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hi Salius ,
I’m doing okay. Adjusting to the new normal of my body which is frustrating at times. The ascites are annoying and while I’m smallish cause I drain for comfort almost everyday, I still find it difficult to adjust. I just finished my first week of cycle 2 of ibrance at the lowest dose , and I’m desperately hoping that it is the magic ticket to keeping my WBCs from tanking and me getting peritonitis again. I don’t want to be hospitalized during the holidays. And I hate being admitted , it’s very boring.
i have mid way bloodwork next Friday so that should give us an idea of what to expect. So fingers crossed . This cycle ends on my birthday this yearPlus I’m hoping I can tolerate the 75 regularly without the severe drop in counts because I do think my MO isn’t going to offer other treatment. I would definitely push for it because I know that some drugs are just harder to take than others , but it’s my impression she won’t because when she offered the 75, she said she couldn’t guarantee I wouldn’t get another infection and that we can try it or do nothing. *sigh*
I’m supposed to have a pet scan in about 7 weeks if I can get through three whole cycles so hopefully we will see some stability or better yet, improvement
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B-A-P: What is the cause of the peritonitis?
I saw a post by Dee, showing good news about her getting closer to getting into a trial. So I posted a congratulatory post, and when I was finished, her post was gone, so I deleted my post.
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Hi all! This is to let you know Alabamadee's account was once again compromised. We have now disabled that account, per her request, and she will post here once she has created a new account. Please let us know via PM if you have any questions!--The Mods
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Husband ,
Hard to say exactly what but it is common in those who have advanced liver disease/cirrhosis.apparently being on PPIs doesn’t help either. I’m on them because of the esophageal bleeding I had and the cirrhosis. The Cirrhosis can cause SIBO as well and bacteria gets into the peritoneum and ascitic fluid. I am on prophylactic antibiotics for this but my ibrance cycle caused severe wbc depletion that an infection was able to take hold. This is why we decreased my dose to 75mg in hopes that my WBCs will hold better. I amquite nervous this will keep happening. the peritonitis can be fatal and I can’t imagine having recurrent infections and treatment for it helps. Probably will become resistant at some point. I’m really trying to think positive but being so close to the holidays I’m extra worried. I just want it to be a good one. And I’d like to stay on treatment.
Sigh
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Thanks BAP. I really hope the lowered dose of abemaciclib (I think that's what you are on) both reduces sides and remains effective. My wife is asking for a dose reduction, as she has problems with her guts. She may be getting some ascites again, slowly. She feels bloated. She also has some thickening of the peritoneum as shown on her last MRI, so I was wondering if your peritonitis might be what she is also experiencing. Her blood tests are showing things improving, normal liver values, low end of range for hemoglobin, tumor markers a tiny bit lower than last. But her energy is poor once again, and she is experiencing bloating and nausea. She quit the enobosarm, to see if that was the problem, but it doesn't seem to be.
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dear husband, how is your wife's wbc? a high wbc usually indicates inflammation or infection.
dear bap, i dont post often. if you look at my previous posts you will find a study re ppis and palbociclib. it looks like mixing the two is no good. a metastatic breast ca nurse at our hospital suggested using ranitidine instead of nexium as thats a h2-receptor antagonist and not a ppi.
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Husband ,
Hopefully that isn't the case and the ascites stays away or low. Her numbers seem similar to mine. My liver numbers have improved and hemoglobin has usually stayed just slightly under normal. I bloat every time I eat. And sometimes I drain just to take that pressure off.
Nixie , from my understanding the ibrance and PPI don't go together if it's the capsule of ibrance vs the tablet. The capsule requires that you have a meal with it. But the tablet does not. I have spoken to the oncology pharmacist who looked into it and reiterated that it was only a concern when taking the capsule. Does your research show its an issue for either formulation
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BAP, did you get a line put in so you can drain at home?
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Husband,
I did. They weren’t going to at first but I was so large that i complained to my MO that going for paracentisis twice a week was not enough and also an infection risk. That and I’d need to be at the hospital all the time (cause they make you do INR blood tests every week for it ). It’s very convenient but it still irksome to have a tube sticking out of my body :
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BAP, so sorry to read about what you are going through. I really hope and pray that you spend the holidays out of the hospital. Hope you feel better soon. You are really brave,
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B-A-P this is all so wrong, and you shouldn't be going through this. I hope you and your docs can come up with some very creative, individualized plan for you. You are not done! And you deserve an enjoyable holiday time! Sending all the good vibes I can.
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thanks S3K5 and SP.
I’m putting a lot of pressure on myself to have a good holiday at home because I really want to make amazing memories with my 6 year old. I don’t want this crap to be thee memory ya know ? He deserves the world and both his parents to be there Christmas morning. I’m trying to remember it’s really out of my hands at this point. And like I said, I don’t think they’re keen on offering much else treatment wise which is so difficult because there are so many left to try. I’m technically on my third line of treatment. I was on cisplatin and gemcitabine for one dose before my varicies bleed and it actually put a dent in the cancer. But I can’t take it cause I almost died.
When I was in hospital they basically kept saying chemo would kill me faster and I basically had to beg for ibrance. So I’m basically trying to will the 75 to keep me stable in the cancer and the WBCs.It’s just crazy to think I had 5 teeny tiny lesions after Abraxane and they were so confident that I would stay stable that I got to stop and just take tamoxifen. But in a matter of 8 weeks this summer , it went wild and now everything has change. I can hardly understand it.
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BAP, is there any way you can get another opinion about treatment options? Wasn't the varice and bleed because of the hepatic hypertension? Why does that exclude you from a treatment that was working? Have you tried xeloda?
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the bleed was from hypertension yes but apparently the combo tanked my platelets and hemoglobin super fast. It's all speculation. I'm not sure really. In the hospital she would come to my room and say it was my choice but chemo would likely kill me faster. And so I proposed ibrance and the tumour board was not on board but two days later my MO said she thought it was a good idea to try. And so here we are. But as stated , it has caused problems in my counts.
If I can't take ibrance anymore my plan was to ask about xeloda. Some women in the ibrance thread have mentioned it didn't tank their WBCs as bad as the ibrance. Believe me, if they want to do nothing I'm not going to sit back and say “okay, whatever you say" I'm stubborn and not a quitter so I'll definitely be asking about it. I don't go down without a fight
edited to add : I live in a small place so during my five week hospital stay, the MOs would take turns being on call and they all agreed with each other regarding the chemo. They were all very negative. But when my liver stopped failing, and my Enzymes were returning to normal , as well as surviving the bleed when they told everyone I wouldn’t , they realized I’m not the average.
for a second opinionI would have to consult out of province which I’m not opposed to doing but it’ll be a lot of hoops to jump.0 -
Did the hepatic hypertension enlarge your spleen? My wife's spleen was permanently enlarged by the pressure. They believe it now hoards platelets and neutrophils, so her count isn't accurate. Even though her neutrophils never reach 1.0, they let her continue and she has seldom gotten sick and never gotten infected in the 4 plus years since it happened. She got over a year on xeloda, and only quit to try ibrance.
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BAP,
I'm so sorry you are in such a hard place. Is there no way for you to access less toxic treatments like Trodelvy? Also, not all chemos are harsh. I'm on Eribulin (Halaven) now and it's been very tolerable. There's also Epirubicin which was described by my MO as "Adriamycin lite". Xeloda is also easier to tolerate.
You still have options that could turn things around for you.
Hugs, Susan
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