How are people with liver mets doing?
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Gumdoctor. Another day, another plan. We never know what's next, have to be flexible and ready to about face. Good news about the blood clots being stable enough for y90. If you qualify for it, it might give you more time like it has for me. Keep us updated on that. Personally, I think y90 is easier than chemo. Liver BX is not hard either. Well, I was out for that, so what do I know? Hahaha. I was out for my y90's this time, too. Unlike the first ones. 💞
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Ok so I am 2 cycles or 3 in on the higher dose of Xeloda...I just got my blood work and my ALT and AST went from 34 & 39 to 300 and 230!!!!!!!!!!! WTH???????? I am freaking out?? I have been having a little pain in my liver periodically...and I just spent a week in NY eating what ever I wanted (I cheated) but other than that I have not been sick or had a cold or anything....does this mean my cancer is spreading?? My bilirubin was perfect at 1.0???
If anyone has any advice please give it.... Also I did message the doctor.
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I often check in on this thread for information, support and see how other are doing. Grateful to be treating my liver Mets 26 months now. Wasn’t sure if that was possible 2 years ago.
Gumdoctor your patience through these trials is outstanding and I’m praying your doctors find answers in the coming days for you.
Grannax2. Love your support for y90. Wish that was in my area. I would have to travel 5 or more hours for a consult.
Nicolerod- praying that your elevated ast & alt is a sign of tumor cell death or liver adjusting to newer treatment. I’m sure your doctor will know.
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She just said for me to stop the Xeloda and all my supplements (even though none are new) and to come in Thursday and have a hepatitis test done and see her..... I am fairly panicked.
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Nicole- In my prayers. I don't have advise for you. Maybe the Xeloda? Keep us informed.
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My wife had a crazy reaction when she first started xeloda for her liver mets. Her tumor markers fell, but her liver become blocked. Bilirubin went up, blood flow through the liver was impaired, and it caused ascites and varices of all sorts of connected veins. It was like the xeloda killed off the cancer too rapidly, and the liver had an adverse reaction to that many dead cells inside it. She quit the xeloda for a while, then resumed at a lower dose, and it slowly recovered. She got over a year on xeloda before voluntarily switching to ibrance and letrozole. So it did turn around, but it took time.
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I asked the if she thought it could be die off...she said she never heard of die off doing that to the AST ALT...why is my bilirubin normal???? If my liver was failing wouldn't my bilirubin be high???
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Nicole, you might want to report those results to the COC. They might be able to offer you a better explanation.
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Frisky I do not go through COC all my meds are through my MO and ND.
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Dear Frisky, I believe the spike is due to xeloda... again, can you check your iver with ultrasound somewhere? We are with you guys...
I am also cross-posting from another thread:
We got concerned yesterday when my wife did her blood: WBC, liver numbers, everything else is okay (CEA<0.5 and CA15.3=17), except for CA125, which is 87 (norm is 32)... We have never done CA125 before, so we cannot compare. Last scans were NED, so I don't know even what to think. Maybe it is elevated because of interferons that we used for DC/CIK vaccine, as I read it is usual but 26 days have already passed since interferon-gamma injection... and our immunology oncologist does not answer the phone today. We also started 250 mg/day Metformin - can it be the case? Does anyone here have experience with CA125, its elevation and fluctuations? Thanks a lot,
Saulius
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Sorry, Nicole, I wrote "Dear Frisky" but wanted to write "Dear Nicole". Ah, my head...
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Saul,
many of my tumor markers were out of “ normal “ range while on various treatments but i was either stable or NED. It might be that your wife’s “normal” for this market will start outside of normal.I would not worry if she is feeling and acting like she has been and wait for at least one more blood draw. If that number increases greatly or other blood work changes for the worse, I might seek additional tests to see what is going on.
In my case those markets never were indicative of wet get was going on with me. I would wait to see an upwards trend in the numbers that stayed before i got nervous more than the actual number.
Did that make sense? If your wives numbers have traditionally been indicative of something going on, I would wait for one more blood draw. If still high, or increasingly, I’d ask about it. If they are about the he same but Out of normal, I would not worry.
Of course, you should always ask any questions you have.
Hope this helps a bi
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Dear LFF, thanks a lot... Her CEA and CA15.3 were not informative according to our MO (I still find it easier to accept when they are in normal ranges) but you are right... we have never tested CA-125, and also it is known that Interferon-Gamma1b which she got last time on the 16th of January increases CA125, at least in vitro, and in some in vivo cases. Apart from that we do not have any other indications, she feels simply great and that is why it was a small "shock". We are having pelvic MRI today (we do it once a year), then a very thorough ultrasound of the breast area, all lymphnodes and abdomen on the 25th, and liver MRI on the 27th... I cannot believe something happened from last time when we had MRI in the end of November, and even same thorough ultrasound on the 8th of January, and everything was super-clear... I know my maximalism and idealism kills me... I just feel so lonely sometimes and have no one to talk to about this terrible disease... Saulius
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anewbreath. I know that Dr. Travis Van Meter will do a "consult" without you having to come here. He's in Dallas. Of course, he only does the surgery here. Just to know if you are a candidate would be very informative, then you could evaluate your options better. Just a thought.
Nicole. Yikes, I'm glad your MO is paying attention. My liver enzymes never seem to do anything. Sounds like your MO will take good care of you.💞
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Saul- always here for you. It’s sucks not having an answer manual for all of this junk: I am so sorry you have to deal with this as a part of your normal life.,
I am going to believe all is well and that this one s ore is just your base value for future reference.
Take care
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Saulius..thank you for your input... I think she is just going to see what shows up on my MRI and PET (that is Tuesday the 18th)... the only 2 NEW THINGS is the Mebedazole...and the MSM.....
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Grannax2, thank you for the IR contact! My understanding is that radiation would be palliative only for me. I’m wondering if he would have any contacts closer to my location. I have always admired how you are a pathfinder in treatment options
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Anewbreath,
Where are you locate? Perhaps someone else has a closer IR contact for you?
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BevJen, that is very thoughtful of you. I’m located in Fargo, ND. The closest major hospital is University of Minnesota or Mayo Clinic, Rochester MN. About 5 hours when the highway is open
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Anewbreath,
Oh. Sorry that I cannot be helpful. I am on the East Coast. But following up on Grannax's suggestion, if you get copies of your scans, as well as reports, various IRs might offer you a remote opinion. Since those two centers are the closest to you, you might try there?
Good luck.
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Nicole, do you know your other liver values, such as Alkaline phosphatase?
I found this interesting article about interpreting liver values.
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BevJen, thank you!
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anewbreath You are way up there. Good idea Bevjen. Lots of MOs think typical radiation is only palliative. Most IR s don't agree. It's not a cure but it has given me more time. I still have mets in my lung and chest. It's all in perspective, some see it one way, I see it through a different lens. Very personal decision. 💞
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Husband..Yes I do they are all good normal:
AST (SGOT) 230 U/L 5 - 34 U/L ALT 300 U/L 0 - 55 U/L Alkaline Phosphatase 65 U/L 37 - 106 U/L Bilirubin, Total 1.0 mg/dL 0.1 - 1.2 mg/dL 0 -
Grannax2, I’m shut in today with a winter blizzard running amuck. Good thing is I have time to sit and research last night and today, My MO is standard of care all the way. I really do like him and I feel like he has my best interest. If I want to pursue anything outside his wheelhouse I don’t see it happening at our hospital. IR, foundation one testing, clinical trials etc... I’m always so envious of others that have close access to cutting-edge treatments and specialist. I get your perspective and I’m praying you have the results you hoped. I’m hanging on amazingly with I/L for 20 months with lots of mets and in different locations but the liver is my priority! I’m trying to form plans for eventual progression. Thank you for your support😊
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according to the article, elevated alt and ast, not accompanied by elevated alkaline phosphatase, is indicative of a hepatocelular cause, and not infiltrative (ie cancer) or obstructive disease. Hepatocelular could be caused by any number of agents or disease such as hepatitis, which directly attacks the liver cells. Thats what i gather from the article i linked above. You quit the stain some time ago, right? Perhaps its the mebendazole
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Anewbreath
I chose to go to MD Anderson with my metastasis. Hoping for novel therapies to my rare neuroendocrine features cancer.
Thankfully it is a 2 hour flight from home. But it is a lot of arrangements to make. 6 trips in 10 months but worth it to us!
However my wonderful breast oncologist is very much standard of care and she only checks for their breast center clinical trials. And she said the only one I qualify for right now is not getting good results so she does not want me on it
FYI- Phase 1 trials at MDA usually have the caveat that all other lines of treatment have been exhausted. But she put me in their data base for if that happens.
She did order MDA equivalent to the foundation one unfortunately I don't have many mutations and not the ones being studied (except for esr1-which I didn't qualify) and none of my mutations showed up in the liquid biopsy- only the tissue biopsy
I am doing my own research, sending her links to trials inside and outside MDA to see if I qualify. and she checks on them. So far nothing available. I pushed for Y-90. Which she was happy to support. The good thing is she listens and we discuss. I feel respected.
Recently I asked to add octreotide to my plan for the Neuroendocrine and both my home MO and MDA MO agreed it would not hurt. but MDA MO was reluctant to go “off book". She wanted me to know that it hasn't been done in her experience. But she agreed to try- I'mpraying this is the treatment to stop progression as none have so far
My MDA IR doc is the one who got me to relook at PRRT for the Neuroendocrine- he even said that I should consider going to Europe if that is the only place it is offered (Read between the lines-my cancer is progressing fast) So once again I researched and I found a different clinic in Houston offering it to non-FDA approved patients in a physician clinical trial but I have to pay for the drug. Putting in paperwork now-no guaranties I get in.
So I tell you this to say- even the major centers like to stick with standard of care. You are doing great to research for yourself. Maybe you can find financial support to go further outside your area for treatment.
Best wishes
Dee
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Anewbreath. 20 month on IL and no progression? That's awesome. You're very wise to look ahead.
My first set of y90s gave me 18 months. That was in May 2017. I just had my second set because new ones started growing and three TX failed to even slow them down. They are very aggressive and stubborn. They didn't even respond to IL, so four TX have failed. You are not where I am, thankfully. When you have progression, there are many lines for your MO to try. I totally agree liver mets are my priority, too. Maybe your MO will surprise you by the time you need it.
So, all that to say, I don't know how long this set of y90s will give me. Maybe a year before new ones start growing? I have to try to make the best of what time I will get. Some days thats easy and fun, some days, not.
Dee you are so well educated on all this stuff. I'm impressed.💞
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I love you ladies❤️ I'm feeling great about getting out of my house today. Thank you for your kind educated replies. I respect your desire to gather info and present to your MO. I am motivated by your strength and understand the importance of it in our situation. We are our best advocates. It's is so good to hear that we are not alone and that others are trudging the same path successfully. My kiddos are 24, 21 and 15yrs and I have a lot of living to do yet! I feel incredibly blessed to be living in a time where we can actually research different treatment options available. My kiddos are 24, 21 and 15yrs and I have a lot of living to do yet! There is so much hype about cutting edge treatment options that it's hard not to feel like I'm missing out, while overlooking the fact that historically, patients have managed years with standard of care treatments.
Grannax-My MO uses blood work/symptoms and feels like my tumor markers are accurate at this point. Scan only as needed to reduce exposure. My TMdecreased at first and have remained stable 20 months now. Praying this stays stable as long as possible🙏 I admire your trailblazing treatment plan!! Praying Y90 last longer then you plan! Have you tried Verzenio? I read some promising info about its ability with liver mets from SABC's
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anewbreath. Great attitude. No I have not tried Verzenio. I think I don't have the right mutation for that one. I have ESR1, like Dee. I am ERPR +HER 2 - but I have an acquired resistant to AIs ( like Aromasin and Femara) .
I've been doing this BC MBC thing since 1992 when I was 44. My kids were 20 and 18, near your kids ages. They are now 47 and 45. I have two grandchildren, 13 and 8. I've been blessed to have a long life even while having numerous DX and TX. It hasn't stopped me, yet. I still have more to do, sounds like you do, too. That keeps us going. I have only had liver mets for a little over three years. I've never updated my profile because it's too complicated for my technology challenged brain. LOL💞
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