How are people with liver mets doing?
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WOW my Mo sent me a big apology message .... I really do love her. She did explain that it was her fault and she forgot all about the T3 bc that was something new that only showed up on my last PET so normally when we did MRI it was only for C spine...and she messed up. She is going to try and have MRI of T, C spine Lower pelvis (to get my sacrum which also has mets) and Liver...all on same day with sedation..... I know today they were gonna use Propanol but the next one might be at a different facility so who knows...that is what I would prefer though...
I still see her tomorrow and we will discuss Afinitor or IV chemo....
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Short update. There is another chemo for me. Navelbine. I was soooo relieved my mood got lots better. More details tomorrow.
Prayers for everyone experiencing frustration today. Lots going on.
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Yeah Grannax! So relieved for you. I am relatively early in terms of chemos but with the nature of my cancer I understand that sense of running short on options. So happy there is something else in the queue.
Nicole, I’m sorry about the issue with the scan but your MO does sound like a keeper. You are in good hands.
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Nicole - Good news from your MO. She will get this sorted and you will get what you need. Pat yourself on the back for your perseverance - when things go wrong, pick up the pieces and move forward!!
Grannax - good to hear you have an other option. Praying it works for you!!
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Nicole - you mentioned having PDL1. Genetic test show I have at 15% (?), DR said I might be elligiable for immunotherapy for PDL1. Are you taking anything for that specifically? Mine 85% ER+ as well, and maybe AR (Androgen? and nothing for it?. Hope you are able to get the drug for stomach. One friend told me she had difficulty with getting a brand name drug for a non-cancer health problem. Her DR and she determined brand worked better and had far fewer SEs. She had to argue with insurance to get it, and finally switched pharmacies when they kept pushing a generic.
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Thanks all for the thoughts, hopes and prayers for me. I do appreciate them all! It is what it is right? So no use in worrying before I need to and just prepare. I should hear tomorrow or Friday at the latest. I had a very nice tech today who managed to lighten my mood.
Grannax, so happy there is another tx for you. What a big relief! Hugs.
Theresa45, I need to talk with MO about Enhertu cuz I think I'm considered HER2 low. I'm no longer straight up HER2 positive per liver biopsy and FISH, but still HER2++ per IHC.
Hray, my liver mets were identified in a routine scan and by an alert radiologist. They previously had been labeled cysts, but he sounded the alarm. Confirmed by PET and biopsy.
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Uh... everyone, best wishes to end up any suffering we all are in. We wait for the whole-body CT results. Inner-organ (liver) MRI - clear. If CT is clear, surgeons are ready to go for local treatment of these II/III level lymph nodes. Saulius
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Saulius - good to hear liver is clear! Best of luck with whole body CT. Pray this can be treated locally
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Saulius, great news that the liver is clear! I hope the rest goes just as well.
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Sualius glad to hear keep us updated.
Grannax Glad there is another option I figured there was.
Bluegirl.... Have you done Eribulin chemo yet? I did and it was good and does target PDL1. I am not taking anything for that specifically but yes, if you some PDL1 but are ER+ HER2- and fail a lot of therapies Insurance is more likely to approve for immunotherapy with chemo.
CROSS POSTING:Cross Posting...
Saw oncologist today... We will start with Afinitor and Exe. I have a PET scheduled now for the 19th April. We both know there is progression in spine:
1. Due to my consistant and new pain
2. My ALK PHOS was through the roof... 358
. I am so SO SO CONCERNED ABOUT THIS She said usually when ALK is elevated it is either from medications or progression. usually bone or in my case bone.....
My bilirubin which most of you know is usually my issue was 0.7 !!!!!! Doesn't get any better than that...that tell us liver is looking good. AST 45 ALT 51.
We will start the Afinitor at the LOWEST dose 2.5mg (which probably not even touch my cancer) for a week or 2..then if I am good titrate up to 2.5mg twice a day so 5mg.... then if that is good after 2 weeks go to 7.5mg a day and stop there.
We talked about going back to Eribulin right now...bc my bone mets are getting out of control...but ultimately decided to go with the Afinitor but scan at 2 months... I did ask if she thought the Eribulin would work better...she said probably yes...but we can give this a try and if it doesn't work we will go right back to Eribulin and or another chemo.
I will take the first pill at dinner tonight. Praying I do ok...and it subdues the cancer.
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Navelbine is an old chemo but a good one my onc said. Although, she said there’s only about a 20% chance for it to help. My daughter asked that question, I don’t give much thought at all to percentages or statistics anymore. My cancer follows no rules. I’m a zebra in that respect. The odds of me being alive are slim to none. I usually fall into the small % of odd things that can happen. Lol.
There’s even one more I can have when/ if needed. Exempra. Anyone heard of it?
My infusions will be once each week for three weeks then a one week break.
As all of you know, telling family and close friends is always the hardest. All my family knows but I’ve got to tell some close friends. I dread this part so much.
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Grannax2, I have Navelbine (vinorelbine) & Ixempra (ixabepilone) on my list because tnbc is pretty much chemo only so we hear about all the obscure chemos.
Also I have on my mTN list 5-FU + cisplatin or carboplatin which from a 2012 study was esp good on liver mets as a salvage chemo. Have you had that yet?
or CMF? Again, good salvage chemo. That one from a 2017 study gave median OS of 9 mos in heavily pretreated population.
links to the two studies are in the 4th post from the top on this page if you want to look them up https://community.breastcancer.org/forum/8/topics/...
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I am worried now that I am going towards liver failure..my ALK PHOS was 359.... and some in the BONE METS thread say even with their bone mets their ALK Phos is like 45 ...65.... I still have pain in the liver (which my MO knows about).... but 4 weeks ago my ALK PHOS was like 158....
The only thing new I have been doing is Milk Thistle and 20mg of Melatonin both are suppose to be great for liver....so I don't think its those...
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Nicole,
Did you check out those supplements with your MO? I recall that with your bili issues, you were taking some kind of a supplement and when you stopped it your numbers improved.
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Nicole,
Here are my most recent ALP scores. They start at around dec. 1st. The most recent one was last week, as my back pain was escalating. The rheumatologist who I saw yesterday said that stuff released from any fractures (which I have some mild ones) release substances that can affect your ALP and your calcium numbers, too.
122 H 133 H 194 H 167 H 179 H 263 H 0 -
Grannax - I use Caring Bridge to share my details with family and friends. It was exhausting sending emails, texts, phone calls and every conversation was emotional. I make a journal entry on Caring Bridge and friends and family get a notification that there is an entry. This gives them details and they can comment or not. I pretty much use it as one-way communication. Some family and friends comment with well wishes, others just read it as an update. This makes it so much easier to talk on the phone or email, text and not have to gthrough the same details over and over and over. Helps me keep focused on life, family, friends and share what’s going on with them etc.....not this disease.
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Hope yes I told her I am taking the milk thistle she didn't say anything about that.....she said she felt it was from progression...especially since I have consistant spine pain now and never had that... I am just scared now bc my Alk Phos was NEVER an issue it was always my biliirubin...oh Hope the thing that made my ALT and AST quadrople was Mebedazole..its an antibiotic and all the ones ending in "zoles" are known to do that.
Bev..thanks for that info. I just don't know what I could have besides the progression in spine that would cause that...?
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Nicole,
Again, look at my ALP number below. What I was saying is that one of my docs said that if there are fractures there, even mini ones, they can affect your ALP scores. As I understand it, you can get fractures from tumors, or from messed up bones from treatments, or from lots of other things. It could be progression, maybe it's not.
122 H 133 H 194 H 167 H 179 H 263 H (starting with bloodwork Dec)
I also had another spike in 2019, after my first liver ablation. It stayed up for a bit and then started going down until it got to normal. I had nothing bone going on then so far as I know.
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Dear Nicole, usually when liver is compromised, all liver numbers go up - yours are all in norm, except for ALP, which tells reason is probably somewhere else. Bone progression could explain this but I hope it is minimal and can be fixed asap with Afinitor. If bone progression is really affecting your ALP, it could be an excellent marker to monitor if Afinitor works. It should work. Holding you in my heart, Saulius
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Nicole, elevated ALK can also be caused by some sort of bile blockage or other blockage in the area that may not necessarily be the cancer in the liver itself. However, apparently, our bodies can tolerate a very high ALK. Mine is elevated in 300-400s now but is down considerably from its worst at 1300 something if I recall correctly. The lab work didn’t consider it to be “HH” (high high or severely high until it was up around 1300 or so. Before I developed the hepatic vein thrombosis, my ALK was always normal or just a bit elevated even sometimes when I had progressing mets. My liver mets are still present on Enhertu but metabolically inactive and my bone mets have been metabolically inactive for a long time. I think my ALK is not going lower for me due to the blockages related to the blood clot which clearly is not resolved yet. Mine also jump up when I am sick, even very minor infections
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Bev..sorry I knew what you meant I just meant that I don't think I have any bone fractures. ...but thanks for the info.
JFL...I have pain in liver but its down very very low on my side...below the bottom rib...(where I had pain from the tumor that was there before the Y90) this pain is worse feels like a bad bruise.and hurts even more to try and take a deep breathe like a stitch from running feels....are there any other symptoms to know if I have a blockage and would that show on a PET?
Saulius...thank you for your words they definitely made me breathe a sigh of relief...
I wrote my post wrong...what I meant to say was my MO doesn't feel the rise is from liver mets as my liver seems to be quiet...since the scan in Jan and Feb both showed success of the Y90 and the tumors to all be dead...so she felt it was more likely from progression of bone mets...but the way I wrote it made it sound like she said that high ALK PHOS is only from bone mets...that wasn't how she said it.
Hopefully the Afinitor will work and it will lower...on a side note just to be safe I stopped the Milk Thistle and the Melatonin.
** Now I just started the Dexilant for my stomach (yesterday after that blood work) but the active ingreditent is dexlansoprazole. which I know the "zole" meds can elevate liver enzymes...
. JUST GREAT...... Just GREAT..... I cannot win.0 -
Nicole pretty sure this is a different zole. This is a proton pump inhibitor like pantoprazole. PPI are excreted through gi tract and kidneys
The others are azole antifungals like fluconazole.
Hope your new meds works well for you!
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Bliss- Any report yet on your scans?
Leftfootforward- How about your scans?
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JFL - I'm very happy to hear that Enhertu is keeping your liver mets metabolically inactive! I was stable on Enhertu for 10 months before progression. I'm now on off-label Trodelvy (I'm ER+/PR+ HER2 low). I've only had 2 infusions, but the visible lesion on my upper back appears to be responding. Just wanted to let you know as it might be an option for you in the future.
Nicole - I hope that the pain in your liver improves and that your ALK PHOS decreases. I'm sorry that the Y90 recovery has been so incredibly difficult. I hope that your liver mets will remain inactive and that Affinitor will work for you!! Sending prayers and hugs!
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Moth you are amazing...I just read a message from my MO saying exactly what you said...Whew that's a relief.
Thanks Theresa...
So I got some news ladies and gents... hold me in your prayers..my PET has just been moved up to Monday. I am not expecting anything good but just hoping the progression is not as bad as I think...
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Nicole - in your pocket on Monday. I will be getting my mapping for Y90 that day
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Thanks Hope I am in your pocket too!
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Pocket duty Nicole and Hope for Monday.
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Moth Thanks for thinking of me. Yes, I’ve had all of the ones that you mentioned. My onc explained its almost like a resistance to chemo, in general, when you’ve been heavily pre treated, like I have. To meit’s almost like the resistance I have ( ESRI) to aromatace inhibitors because I had taken them for so many years. I don’t know if that’s a perfect analogy. It sounds like my odds go down with each new chemo my body sees.
Hope. I’ve heard of Caring Bridge but never thought of using it for myself. Good idea.
JFL Good to hear from you. 💞
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my liver specs have gone.. I am.On an infusion every 3 wks Herceptin & perjuetta , solace once a month & daily camera tablet, good luck xxevery 3 wks.. In
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