How are people with liver mets doing?
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nicole, how quickly does TUDCA work? Do things improve in days or does it take longer?
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Anyone heard from Kattysmith???
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Looks like Kattysmith was last seen on 12/4/21, more than five months ago. :-(
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Moth you should see results within a week to 3 weeks. When did you start?
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Hi,
I have new spots on my liver, where before it was just bones and colon (portion of colon removed). I will be starting Piqray soon and I hope this helps my liver spots. I was on kisqali and verzenio previously. After Gene test we have a new drug direction Piqray.
I have not had any noticeable issues with liver except high ALK PHOS numbers for 2mos and decreased appetite with no weight lose.
I am wondering if there is anything else I might be also checking for that comes with my new tenants in my liver? I have just began to read this board.
thank you
tigre
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nicole, I didn't start it & decided it's not for me..after reading all the animal cruelty reports and not being sure I could find a good synthetic one. My liver will just have to heal itself
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Moth good luck I hope it gets better for you.
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Does anyone have a higher hemolysis value? The range on my test is 0-24 and mine has always been 0-3 yesterday it came back at 8!!! While that is not over the limit I do not understand what this means any thoughts??
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Dear Nicole, 8 is good, if it is in range, isn't it? I mean, I can read in google what it is but I think it has to be interpreted with other blood numbers together? You should probably ask your MO during next visit and also teach us what it is?
Saulius
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thanks Saulius...I actually spoke to my MO today and she said its perfectly good
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Dear Nicole - that is what we always want to hear from our doctors: perfectly good. Your smile at the end of the sentence says it all!:) Hugs, Saulius
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hi all. I haven’t been on in a while as I’ve beeen in hospital for the last 8 days. I was first diagnosed with hepatic encephalitis on a Sunday as I was confused and my husband said I was acting drunk. My liver is not clearing the toxins well enough which is lame. My Mri is showing continuing fibrosis which I hate because it’s like my treatment hurt me more than the cancer .
Then… my hemoglobin ranked and they thought I had been hemolytic. Nope. I have DIC where it’s not the super bad kind at the moment but I had to get plasma yesterday to reintroduce clotting factors. I need my Bili to go down in order to show I’m improving before I can go home. It’s day to day but I sure miss my son. Because there are COVID cases on the floor I’m on , only one visitor allowed and my son would need to have his dad with him. My Mo isn’t allowed on the floor unless she’s on call so that’s how strict they’re being.
I miss being in my own space. I’m hoping to be out soon and back on my drugs cause I’m off them until the DIC resolves.
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BAP - Well...damn. I wish you a speedy recovery so you can go home, to your own cozy nest and hug that boy of yours. It’s so unfair that this disease has so much collateral damage. Not just on our bodies but all the life moments that it robs us of. The bright side is that when I’m with someone I love, the moment isn’t taken for granted and the feeling of love is intense. I hope you soon have many “intense” moments with everyone you love
Tigre - I hope Piqray treats you well and beats the crap out of your cancer.
Nicole - Phew. 😁
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With so many on here with so many issues, I hate to even post this, but here is an update on me.
Scans yesterday show SHRINKAGE !!!! I cannot tell you what the measurements were, as they will not go to the Portal for 1 week (default at my cancer clinic for releasing of results), but my MO read off the measurements of all the lesions and the latest measurements were less than before. Maybe by a mm or 2, but still a decrease versus an increase. So 9 months into Lynparza I have had 2 stable scans and now a decrease scan.
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B-A-P sorry to read that you are in the hospital. Hope you will be discharged soon. How do they diagnose DIC and what's the treatment for it?
Wish you a speedy recovery.
SK
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Hi All, I am really disappointed to learn that my PET scan shows progression in the liver and bones. I was in the hospital and then a rehab center, so missed chemo for 2 months. My MO thinks the progression might be due to this time gap without chemo. I was on Eribulin prior to getting sick.
Now we restart Eribulin and hope it works in keeping the liver mets under control. MO has also ordered a brain scan; there is some swelling in my abdomen and feet so an ultrasound has been scheduled for next week. Did anyone have swelling in the abdomen area with liver mets? Can anyone explain the reason for this? Could it be ascites?
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Candy - Yahoo! And NEVER be hesitant to post good news. This news lifted me up. You have waited a long time to get this type of news and it’s worth celebrating!!
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Candy, Shrinkage, yahoooo!! That’s so great to hear.
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Candy I am very happy for you, that's great news. Bap, I am sorry to hear you're in the hospital but it does sound like it's going to get better very soon and I'm looking forward to the day you go home. Being close to loved ones is always healing.
S3k5 that's really disheartening. I do hope that once you're back on your treatment everything goes back to how it was before. I understand what you're going through as my mum showed progression on her last MRI on ibrance/letrozole. I'm heartbroken. The largest 2 lesions are dying from the cyberknife but the smaller ones increased and there are 3 new small ones.
June should have been a great month. Ibrance would finally be covered by my country's health insurance and my mum was so happy about that... And now it seems like ibrance failed. Waiting to hear from her oncologist. I'm sad. I'm broken for my dear mum. She doesn't deserve this.
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sk and daughter of. Sorry to hear about the growths. It’s always disheartening to hear but keep the hope as something just may work.
Treatment for DIC is complicated. It depends on if you’re bleeding or not as well as inr and fibrinogen levels. Cyroperciptate is one treatment that can reintroduce clotting factors. It’s just a plasma infusion. I’m also being given vitamin K and folate as well which seem to be working.
For the encephalitis I have to take lactulose which is a laxative everyday to get rid of toxins that way. I have to have 3 movements a day. I had my lactulose today and while I’m cramping , I’m not crapping lol. Which means I’ll have to take more which is really playing with fire when it comes down to it
Also you could have ascites.. it’s possible. Make sure they check that out. Ascites is no fun. I just drained 1.2 litres off my belly today and I’m so bloated it has done little to help me today yet. But I imagine I have a lot going on In my body.
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b-a-p,
so sorry to hear that you are back in the hospital. I hope they can get everything under control so you can go home soon.
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b-a-p, sorry about your hospitalization & the liver complications leading to so many things you need to get fixed! I hope you get it all better soon and get home
I just got my CT report back - progression everywhere: liver, lung, new kidney lesion. Trodelvy was not my magic. I'm moving on to line 3...from here on it's just a handful of chemos left & most of the chemos don't really work on tnbc so that's not really a good thought to have....
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Moth,
Do they have enhertu in Canada yet? It seems like they are throwing that at everything here. I believe that they are doing another presentation on it at ASCO in June, but I think the FDA here has now approved it.
Good luck in finding another treatment.
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BAP so sorry ...really you should buy the TUDCA for you liver....
Candy YAY!!!!! what treatment are you on again??
S3... I am so sorry hopefully the Eribulin starts kicking cancers butt again!
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B-A-P, Sorry to hear of your being in the hospital. I don’t have much understanding of DIC or hepatic encephalitis. I hope the fluids and supplements you’re receiving are helping things. I’m familiar with lactulose from my own hospital stay in February and hope it does the trick in helping you get rid of the toxins, unpleasant as it may be. Sending good thoughts that you can go home soon.
SK, Progression sucks, sorry you’re dealing with it. I was off treatment for some months earlier this year, and like your situation, it really couldn’t have been avoided. I started infusion chemo in April, and was very relieved to be on something again. Who knew I’d ever say, yes, please put some poisonous chemicals in my body. But knowing my liver mets were finally being treated again was good, even without knowing if it was actually working. Best wishes to you as you get back on the Eribulin.
Daughter of, it’s a bummer to have to cross Ibrance off the list. You say that you’re waiting to hear from your mom’s oncologist. Maybe he/she will decide to stay with it a while longer? Either way, I think there are many good options for her once Ibrance runs its course. Thinking of you and your mom as you wait to hear what happens next
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Moth— sorry for your latest progression results. Do you know which treatment will be next?
Any new clinical trials available for tnbc??
Will keep you in my thoughts. Hoping next treatment is “the one “ to slow progression
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BAP - I hope you're crapping soon. The cramps suck. Please keep us updated.
Moth, s3k5 - Crap. Hugs.
Daughterof - why do you feel Ibrance has failed? Is the progression in her liver or elsewhere? Depending on the site of progression some doctors choose to swap out Letrozole for Fulvestrant OR radiate if it’s a single spot of progression. I’ve even had a spot that we decided to wait and see and it disappeared on my next scan. I suppose since your mum is ER-/PR+ that may also play a role determining the best path forward.
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Nicole- To answer your question to me: I am currently on Lynparza (a PARP). It is my 2nd line therapy, after Ibrance/Letrozole. I am still on Lupron to suppress the ovaries, since I am still PR+ and my MO thinks some tumors are hormone driven still. I wish BCO would fix the Profile problem so I could clean up my Profile to make it easier to follow my history.
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Uh, so many messages... The time difference usually does not let me react quickly. So sorry for those who suffer:/
BAP, it is really frustrating that you can get rid of these bad cells but have these bad side effects from drugs - that is just crazy. I hope they control it soon and you can see your son. I think you have to have some hepathologist assigned to you, who could observe you constantly and find c-drugs that do not affect your liver that much or stop liver fibrosis, as you really have had enough.
Moth, I always follow your blog (and urge others to do it too), so sorry to hear things are happening:/ Do you think you'd have power to go for a clinical trial, like prof. Rosenberg's TIL one? I know it is in US, and you are in Canada, and that would cause many problems but still. What about leronlimab trial which is I think Canada based and very successful? Or some PARP inhibition (olaparib), or PIK3CA (alpelisib)? I know how knowledgeable you are and trust you 200% but do you have someone close to help you with all the visits, papers, decision making?
Saulius
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I was away from the Forum yesterday and so much has happened. I am so sorry to hear the news of progression SK and Moth. In particular, I know how limited our options are in terms of trials in Canada Moth. I keep watching as my options continue to dwindle (in my case, it’s my indolent disease that is the issue as I seem to respond to very few chemos - not sure what we will do if Xeloda has stopped working). I so hoped your gut instincts were wrong about the Trodelvy.
BAP, I too am sorry to hear you are back in the hospital struggling with the fallout from treatments. You can’t seem to get a break. Sending my thoughts for a speedy return to your family.
Good news indeed Candy! Never hesitate to celebrate with all of us. We can all stand to hear some wins!
Apologies if I missed anyone. Much catching up after weeks of a quiet thread. Hugs to all
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