How are people with liver mets doing?
Comments
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BAP -how awful! Hoping that your team resolves this soon and you can get out of the hospital ASAP! Praying for you
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BAP, we haven't had a chance to chat on BCO but I am also sending my prayers for you, hoping things turn around soon.
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hi friends.
Thanks for all the prayers and wishes. Today is a better day but not without setbacks. the pickle we are in is that I had major bleeds from varicies in the upper Gi which sent me to the icu. They banded them and I’ve been on meds for that.
the other problem is that my portal vein is clotted and will need anticoagulants for that. I was on them a few days before things went down and off ever since. So it’s a balancing act.Most of my liver functions have improved and bilirubin is high, but holding stable.
I had one treatment of chemo so far and it is still on the table bc they saw an effect from just one treatment.
In saying that , the bleeds and clots are the biggest thing we have to tackle first.
Desperately hoping to get out of the hospital eventually but it’s not likely soon. It’s the best place to be though. I’m not a quitter though.
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BAP, sorry this has been such a difficult time. I’m hopeful that your team can find a treatment that you can tolerate and that destroys the cancer. Seeing your baby will be so sweet when you finally get to go home
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Dear BAP, oh, definitely you are not a quitter! Hugs hugs hugs, Saulius
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B.A.P , no you dont quit! As you said hospital is the best place for you now. I hope the medics get you to your best health and you return home as soon as possible. x
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None of us on this thread are quitters. BAP, I hope you get out soon but it sounds like the hospital is where you need to be for now.
Thanks for keeping us updated
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dear BAP, what a time you’ve had. I will pray for you and your team.
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BAP what exactly is your bilirubin number at right now?
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BAP hope things improve and you go home soon.
How’s everyone? I have been trying to catchup with the latest posts in this forum.
The last week’sround of Carbo+ Gemzar was tough on me. Fatigue and nausea. Spent the week in bed.
Any suggestions to overcome this fatigue?
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BAP what exactly is your bilirubin number at right now?
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Nicole , it is 53 or 56. Went down from 63 yesterday. The last few days it was holding there , today it’s down.
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B-A-P wow, what an ordeal. Hang on, sister! It is encouraging that the round of chemo you did have was effective, and that your bilirubin went lower. The mental health struggle in the hospital is real. Keep reaching out to us. Make them lift the window blind so you can see out. Escape into music, a podcast or show if you are up to it. I hope they let you sleep. (Got an eye mask?) Sending you tons of support and love!
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I started this Thread back in the Spring. I just posted again on it. Concerning Medicare in the United States. Anyone on Medicare and have knowledge of dealing with cancer while on Medicare, please check out my latest post and see if you can help me with my questions. Thanks.
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Ladies,
You’ve all been in my thoughts and prayers though I don’t check the board as often as I should. I had weeks that I just can’t and don’t want to do anything or talk to anyone even my friends and some family.
Navelbine has been a surprisingly difficult to tolerate drug with lots of issues and it may not be even working. I had my PET yesterday and still waiting. I have a tin of body aches in bones and neck and back .. I think the bone mets are going crazy on Navelbine. I’m considering radiation again but worried about side effects. Pain meds don’t cut it sometimes.. I have alternate between tramadol, oxycontin and steroids depending on pain location.. it’s a never ending guessing game.
I’m not sure what more I can do honestly. It seems I’m out of options and good clinical trials are not easily available who’s heavily preteated like me.
I was offered a clinical trial using Niraparib to evaluate food interactions with it. I’m not even sure that drug will do a thing for me.
Has anyone here or someone you know exhausted treatment options and decided to recycle old meds with success?? What was your thought process? How did you choose which ones to go back to? How long did it work for if at all? Getting desperate
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NouzayO - I am close to the situation you describe, exhausting treatments, maybe not eligible for clinical, wondering about trying previous meds. Next week I go out of state, seeking another opinion and to a clinic that does cinical trials. I've wondered why there are so many exclusions if previously treated Why else would you participate if current treatments worked? You participate because they have not worked. I'm wondering whether to redo genetic tests. One came out as negative for 20+ specific to BC, another looking at over 70 markers was inconclusive for most of them because of a lab error. I wonder if insurance would nix old meds as far as coverage.
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NouzayO, I am running out of options soon & MO says she would like me to cycle through some treatments that worked for me a long time ago. Beginning with Tamoxifen which worked for 6 years beginning 14 years ago. I haven't been on anti hormonals for a long time & she feels that it may work again.
Doxil worked for me for more than a year but unfortunately heart damage can occur even using Dexrazoxane prior. I had very few side effects on it and would like to have kept on it but worrying about a heart attack, she just wouldn't keep me on it any longer. I'm on a trial now & hoping that other trials will open up before I have progression
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Nouzay, I am in the same boat as you GG, and Blue girl. After I failed taxol in June I had the talk with my doctor about how few options I had left. I asked him if I could take more AC which was the first chemo I had in 2015 and really knocked my aggressive mets back quickly and dramatically. He said "the heart never forgets AC", but suggested that we try Doxil, which if I understood him correctly, is a newer less toxic version of AC but still has the same issues with heart damage. Tomorrow I will have my third doxil infusion and will scan in late September and have another echocardiogram . So far I am finding it to be extremely tolerable, almost unnoticeable in fact, but there is there a limit to how many treatments I can have, even if it is working. I don't know what will come next, if anything, which is scary.
I've had liver Mets for 3 years now and they only time that my liver values have been severely out of whack was in June and everything has gone back to normal since then. I have several diffuse mets in both lobes and a couple that are larger but my doctor says that only 5% of my liver is compromised which doesn't really make sense to me. Why would I be at risk for liver failure if that's true? I've never had any pain or any tenderness in my liver area nor have I ever had ascites. I take 400 mg of ibuprofen daily for knee pain that is not related to cancer. At such a low dose that I find it hard to believe but it could cause toxicity. Other than a glass or two of wine per month, I don't drink, although boy do I wish I could!
Other than some serious mobility issues and fatigue, I feel really well, but I'm constantly getting the message now from my doctor that my candle is burning low and to prepare myself. Color me confused and conflicted.
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Hi all ...I am cross posting...I just wanted to let everyone know that my IR was right in saying that I would probably do really well with the Y90 this time based on the fact that the tumors were not located near the colon wall like the last time. I did really well!! I am so glad I trusted her decision. I also began chemo Halaven (also 2nd time taking this) last week. 2 weeks on and 1 week off is the schedule.
I do still have pain in my C7 and T3 from the fracture but it is definitely not as bad which leads me to believe the radiation is working to kill the cancer there so new bone can grow.
Praying the Halaven will work and I will finally get more than 3 months on something.
PS: I asked if I can ever get Y90 again in the future..and she said absolutely as long as location is good and my liver numbers are good.
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So sorry to hear about your last round being so rough. Sure hope you feel better soon. Press on.
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Nicole, I’m so glad your recovery has been better this time! You needed a break. Now let’s see that Halaven do itswork 💪.
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That is great news Nicole. You sure didn't want to go through what you did last time.
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Dear Nicole, wow, I am so happy. Super psyched for local treatments!
Others are also pushing forward - great news for blue Monday...
Saulius
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Katy I don’t understand all that either. I’ve still never been told what % of my liver is involved. The only thing I know is that it’s lower than 90%. But I do know of one lady who did have 90% and is now NED. Crazy. Next time I go in, October 11, I’m going to ask again. I really don’t see how you could be anywhere near liver failure if you only have 5% and good numbers.
I go on Wednesday to get my first infusion of iron. Can’t be too soon. I hope I can actually feel the difference in my energy level.
Nicole, I told you that you were being brave. Look at you now.
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Grannax, that is great that you are getting the iron infusion. My wife had it, and it boosted her iron levels tremendously. Much better than the pills that caused her all sorts of stomach problems.
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Thanks Grannax for the vote of confidence and I hope your iron infusion gives you that much needed boost.
I think my doctor was so concerned about liver failure earlier this summer because before I started doxil, my ALT & AST were sky high. They are okay now.
My scan is later this month and I am scared to death because I don't know what will be next if I fail.
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So for those with liver mets...has anyone heard about Diflucan working? Its a yeast infection pill...but not to take everyday (for cancer) but I heard that it can be helpful if taken once a week..and there is medical literature showing its effectiveness against MS as well... I want to add it in.
Is anyone else taking ivermetcin? I am for cancer (not covid) I started my 3rd round today...I take 6mg 3 days on and 4 days off....
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Nicole, FYI, fluconazole (diflucan) can cause liver damage on its own but for you the big concern is that it is a potent inhibitor of CYP 3A4 which is how Halaven is metabolized & it can thus cause dangerous build up of Halaven (& other drugs metabolized by that enzymatic pathway) in your system.
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Moth wow thanks for pointing that out..I did not know any of that...but even 1 pill 1 time week could be that harmful?
Just to be clear and that I am understanding completely correctly it is not that it prevents the Halaven from working..but rather makes it to stay in my system longer which could be damaging to liver and/or raise liver enzymes? Again..I wondering though if only 1 pill once a week..would do that...but I would rather be safe than sorry...so I will omit it.
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Nicole, you'd need to ask a pharmacist about what dosage would matter because I really don't know that. But yeah, I remembered that the 'azoles' have hepatotoxicity issues (I'm not kidding guys when I say 1 of my patho profs was obsessed with the liver so we covered it in an insane amount of detail) so I had a google about the other details. The cytochrome P40 enzymes come up over and over again in pharmacology & oncology.
When you take in a substance, your liver breaks them down. Often the thing we ingest is not metabolically active and has to be broken down to be useful. And vice versa, we take in a thing that is metabolically active, and our livers make it inactive.
"Eribulin is primarily metabolized by cytochrome P-450 (CYP) isoenzyme 3A4 to at least four inactive metabolites. Approximately 5–7% of the eribulin dose is excreted unchanged in the urine, with an estimated 82% excreted fecally as unchanged drug. In patients with hepatic impairment, clearance is reduced and the elimination half-life prolonged compared with patients with normal hepatic function. " https://www.medscape.com/viewarticle/763337_3
<--- this is interesting to me because it highlights how a lot of the difficulty in these drugs is that we can't get them into the cells. I mean ~90% is going down the toilet....
But I don't know how much fluconazole would mess with it
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