How are people with liver mets doing?
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NicoleRod , thanks for your suggestions. I think I will seek a second opinion. I can't 'wait and see what happens'.
Your next line of treatment is ofcourse, dependent on your biopsy report. But generally, as seen on this forum, many start with Taxanes or Gemzar/Carbo combo or Xeloda. All have shown good efficacy. Whatever your MO chooses, hope it works for you with minimal SEs. Keep us posted. Good luck.
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LoriCa, it's so good to hear you have positive results with TDm, I am knocking on the wood as I say it , that's really good news.
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Nicole & BevJen - Yep, Red Devil, AC (Adriamycin and cyclophosphamide) is used for mets. It was my first line treatment for for my extremely high-grade metastatic tumors that were popping up under my skin like mushrooms late in 2015. I had always said I'd never have chemo but quickly agreed to this as I was scared shitless. It saved my live. Within two weeks, I could palpate my numerous tumors *melting away* under my skin! I was on AC for two months, then my MO gave me the option of continuing for another round or going on to Ibrance / Letrozole. I chose Ibrance and was stable on it for two years.
Is it a walk in the park? No, but luckily I didn't have any severe side effects.I had an hour of pre-meds before every infusion: steroids, anti-nausea, and ativan. Some constipation at first (but you can usually get ahead of that before you start) , no nausea. I did have some mouth sores for about a week and they were horrible, but was able to get them under control. Of course, I lost my hair. Others have had a really rough go of it, so that's something to consider. Everyone's situation is different...it's so hard to know what to do and when.
I've been on Xeloda for 3 weeks now. So far, so good.
Keeping my fingers crossed for you!
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Xeolda...yup so that is the verdict. I guess if there is a thread here I will go there. I don't want to sound like a pessimist but...I just feel like more people fail on that...than succeed.
So my biopsy did not test for FGFR, ESR1 or P13K....that would need a foundation testing again and chances are they will not cover another test in the same year since my last one with them was in April. My doctor said right now the main concern was if I changed to HER2+ or TNBC which I have not. She said the 4 other oncologists on the tumor board all agree they need to stop my cancer now..or at least try with something they know can do that....Chemo. She still wants to consider me for 2 specific trials (we talked about these before my cryoblation) however, not just yet bc again, we need to stop this not "see" if something will...but with something that we are more positive will. She is still going to try and send out to have the sample tested for those mutations I listed above. The testing that Hopkins did on the sample is not like Foundation Testing where they tell you what mutations is has and what meds work against those mutations.
For my body weight and height I technically could start the Xeolda at 2600mg / day but we are going to do 1000 mg morning , 1000 mg night so 2000mg a day to start for 2 weeks on ...1 week off and then we can change that to 7 days on 7 days off or what ever might work better depending on how I do. I will start on the 15th. The Marine Corps Ball is the 14th and I don't want to feel awful for it so 1 more week is ok she said. Plus I have to consult next week about getting my ovaries out..yes that is happening and I am so glad it is.
I did find out (Saulius) my KI-67 dropped now... 5-10% from 70%....so there is something going on with the tumors... on a side not she agreed to prescribe me the statin...lowest dose but still I am happy that is another pathway blocked! The good thing about Xeolda ...it is NOT processed by the liver...but instead by the kidneys so hopefully my liver will be able to cope with the supplements and off label drugs.
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Thanks Anotherone, it is a big sigh of relief to think this one might actually be working. Won't know for sure until my next PET scan since I've repeatedly had a problem with knocking it back one place only to have it pop up someplace new, but if nothing else it buys me some fairly easy time before I have to go back on a chemo that causes me to lose my hair again. Silly how important hair becomes, as if once I can no longer avoid spending the rest of my life on chemos that will keep me permanently bald, I will truly become a "cancer patient" in my mind. Having hair lets me pretend to be normal once in a while. Anyway, I really didn't want to spend yet another Christmas losing my hair, so I'm glad that TDM1 seems to be working since my MO was leaning more toward other chemos but agreed to my request to try this first.
Nicole I hope Xeloda works well for you!
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Nicole- 4 out of 4 docs agreeing is as good as it gets!! Opinions no doubt start diverging further out down the line, but they know Xeloda is great on liver tumors and want to start in on clinical trials when they are sure they have this in hand and controlled. At least it is a pill with reportedly few side effects. I'm sorry you have to do this awful jumping around and all the stress!!! The San Antonio conference is coming up early Dec and perhaps there will be some actual news this year about something other than how fabulous the CDK4,6 inhibitors are.
Does anyone know if they put the abstracts online in advance of the meeting? If so, they could be out any day..
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Nicolerod-I spent 5 years at NED on Xeloda. I was very sad to have to move in from it. May it work as well for you.
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went for taxol infusion today. Was given an iron infusion first. Wasnt expecting that but will take it. I’ve been anemic for months after last iron infusion in march wore off. Hoping to regain some energy. otherwise everything went well. I am still hoping that this buys me tune until the trial in San Francisco accepts me. ( tgat still b isn’t a sure thing).
Thinking of everyone and hoping all tests and new treatments yield good results.
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NIcole, good luck with your next treatment. I think you are making the right choice with Xeloda. In your previous post about your Ki score, did you mean that your 70% Ki went down by 5-10% to (60-65%) or did you mean that your actual Ki score is now 5-10%? If the latter, that is quite a jump. Xeloda activates in the liver via liver enzymes and is known to work well on liver mets but is not hard on the liver at the same time. It really worked well with mine. Miraculous, actually.
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Dear Nicole, Capecitabine... know nothing about this chemo except that it is new.Hope it works wonders for you! On the other hand changes in ki67:20, then 70, then 10 %... hmm... has your MO any idea whi this happens or tests are so inacurrate?S, grade3, low ki67... does that mean that not so many of cells proliferate at a time but the cycle-time is very short?Otherwise it all sounds strange... Sauliu
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JFL..yes was 70% now between 5 and 10% quite a jump. Saulius...I asked "is that good that it went down so much?" she said "I wouldn't say thats good or bad".....I am now going to send her a message and ask what you asked her.
Also and Cure-ious..I forgot to mention she did say that we definitely MAY be able to revisit CDK/ 4/6 inhibitors and such in the future
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At Stage IV metastatic dx, my MO said Ki67 is not used anymore as it doesn't impact treatment choice, the same with grade.
My biomarkers were determined by FNA.
Interesting that others are given that info.
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SandiBeach57-
I was told the same thing -- that in metastatic, the numbers are not done/used.
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Hi all.
Nicole- Glad you have a plan now. Enjoy the Ball and praying for the 15th and starting the Xeloda. That it will be successful for you and easy on the side effects.
Thinking of everyone.
We shall see what the PET scan says for my possible, slight, progression to my liver met. My MO mentioned possible PARP next. I asked about Piqray and she said not now. Neither she or I said anything about Xeloda. ???? Wonder why. Good to have many choices for MBC, but also confusing as to what to use when. 1st, 2nd, 3rd.
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Well, my fear of being off chemo in order to deal with the unexplained fevers and then the (fever-less) liver abscess was well-founded. The tumor on the right has grown and a new one has appeared on the top of the right lobe. It seems to me rather quickly. Even worse, the CT report mentions some nodularity that could be due to edema but peritoneal carcinomatosis can’t be ruled out. And new small ascites. This is worse than my original PET that showed a liver chock full of tumors. I am frightened. My onc is also concerned. She called me, and her NP is working on getting insurance approval for Doxil. If she can get it fast, I may start it in a couple days. We need something fast and strong and different from eribulin, so Doxil is the one. Foundation One is in the works. I requested we also do a Guardant 360 liquid biopsy and she agreed. Hoping we can add a targeted therapy.
There is a long saga of how I got to today, involving a fifth hospital stay and lots of advocating for myself.
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Oh, Shetland, sending good vibes your way. I hope your doc can get you onto a treatment quickly and that it works to wipe out these new invaders.
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Thank you, BevJen. I had fairly smooth sailing for five years. Now it’s getting rough.
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Shetland ((((hugs)))) I am praying Doxil will work.
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Hi Shetland. These past few months have been crazy for you. It has to be maddening as you first had to deal with your bile duct/stent issue while worrying about being off treatment. You had a feeling that the liver was going to misbehave.
But your liver mets are treatable and happy to hear they will start quickly. Will you be an inpatient when starting chemo? Did Xeloda and Halavan fail or just not strong enough to quickly kill the liver mets? Are your stents out? What is plan for scar tissue? Any IR treatments being discussed?
You might have explained all this and I missed. Please remember that you are an active, strong woman. This is just a blip and you will get back on your dancing feet.
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SandiBeach, I will cling to your encouraging words! Thanks, Nicole!
You know, one year ago DH and I decided we needed to sell our big house and downsize because my health and my DH’s health, and the effect on our finances of that, demanded it. The whole process of fixing up the place, getting rid of stuff, showing, moving, was grueling. I remember saying, I hope this doesn’t do me in. Shortly after completing the move, things started going wrong with me.
I got out of hospital stay #5 yesterday. I am now sitting in my own quiet living room with my kitties. Xeloda was still working for the most part, and we added eribulin because of a tumor on the right and the bile duct stuff. My onc says that if those three doses of eribulin I got had been effective, I would not have the progression we now see. She also says that even though the bile duct biopsies showed benign, she does not trust it because of ILC being sneaky. The only plan right now for the bile duct is to see if the current stents stretch the area out so I can go without replacing, and just remove in January. I think we will discuss IR later. We are focused on hitting everything fast and systemically right now.
I am trying to be active and strong. Hospital stays and abdominal pain are keeping me too sedentary. Tomorrow I will start taking walks in the neighborhood again. Did I mention I had a second liver biopsy yesterday?
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Shetland, I’m deeply saddened by these news. My heart goes out to you with many wishes that Doxil will be effective in reversing the current situation....
I’ve been on doxil for five months now, I don’t know if it’s effective since I have not had a pet scan in a while, but the good news is that it’s a relatively easy monthly treatment with mild SE.
May you experience a quick turnaround on it.
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ShetlandPony -
Wow so much to deal with...I am so very sorry you have all this placed in your lap to deal with...like all of us here, I do not understand this disease...often I do not understand our role in this disease...stand up and fight...roll with the punches...accept the inevitable...I just don't get what we are supposed to do or how we are supposed to do it...
All I can do is offer total support for you...pray... if you can accept that kind of support...and send you much love through these invisible cyber miles.
Gumdoctor
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My heart goes out to you, Shetland.
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shetland Im getting ready to go 3 months with no chemo Scary. At least they will be zapping liver tumors during my break. I hope my lung and mediastinal node will stay stable during that time. I will be taking Faxlodex as a systemic TX i have no idea how effective it will be.
I think about you a lot. Seems like your' re not getting any breaks lately. Im still praying that you will. 💞
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Shetland, love, you have been through the gauntlet these past few months. I'm so glad you're home and enjoying the peace and quiet. No more dragging the IV bag with you to the bathroom! Your MO sounds amazing, it's good to have a true medical partner in all this. I'm adding my prayers that Doxil does the trick. Like Frisky says, and I've heard from others, it is supposed to be a relatively easy treatment. May it be so for you. Hugs ~ JL
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Hugs Shetland, hoping Doxil works well for you.
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Just now logging on since Shetland's news.
Shetland- You are in my prayers. I pray daily for all on BCO. I am so sorry that things are getting rough for you now. I pray that the Doxil will be kind to you but kill those liver buggers. And that you will rebound after this and have a long period of stable health.
Like Gumdoctor said--- I do not understand this disease. I hate it.
I thank God daily for my stability with the liver mets. I will do the PET tomorrow and see what it shows. But I am thankful that I am 2 years in with my easy Ibrance treatment. Yes, I feel cruddy at times and cannot do the things I used to do, but I wonder/fear what is to come. It will come to us all. Just don't know when.
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Shetland- I am so sorry- this is a crummy situation! I am glad that you are home. there is a peritoneal carcinomatosis thread- though it is very quiet now. I don't remember much about how it was diagnosed in the various people- it seams that by colonoscopy or looking for other things. Seems like it is a back burner issue - even with ILC. I hope it is just inflammation that they see.
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Shetland, you have really had a challenging few months. I am so sorry to hear about the progression. It is particularly frustrating/sad when we progress because we cannot do treatment. Such a conundrum. One note about Halaven, I read one study where the median time for it to start working is 12 weeks. 3 doses may not have been enough. I had 4 doses when I was waiting to get on a trial. It didn't seem to work but I suspect if I gave it a full 3 months, the situation would have been different. Unfortunately, you are not likely in a position now where you want to be pushing the envelope to test that. Good you are looking into local therapies. They can really help get a handle in liver mets. Praying for you and for a good next treatment line.
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The support here means so much to me, Lori, Katty, Sandi, Nicole, BevJen, Frisky, and...
Gumdoctor, I think we deal with it in all the ways you mention and more, as the current situation or present hour calls for. Mostly I endure what I must in order to live. I have accepted, for the most part, that my life is not to be the life I expected or that my healthy friends have. Or else the grief and rage are held at bay. Thank you for the prayers. I accept goodness from all sources! Sending love your way, too.
Jaylea, do you know what, I refused the IV pole the last two hospitalizations. I could not bear it. I made them give me heparin lock for my port and only hook me up for my med (on stay #4). It made such a difference. Yes, I am lucky in my MO. We trust each other. I rely on her expertise and her genuine caring, and she values my good intuition about my body and my intelligent questions or suggestions. Sometimes I am the one who has to bring up ideas.
Candy, I get what you are saying. Here on BCO we meet people at various points in their — Er, give me any word other than journey here — experience, so when we think about our own path, to quote Robert Burns, we “guess an' fear".*
Nkb, I'm avoiding the peritoneal carcinomatosis thread for now. Speaking of inflammation, I called the cancer center and requested they test me for Clostridium difficile. Diarrhea after antibiotics and hospitalizations, you know. I fully expect Monday's badly needed chemo to be delayed for a course of antibiotics for C dif. My oncologist and one of the GI doctor's have said to me, “You're always right." I wish it to not be so right now.
As JFL says, progressing because we cannot do treatments is awful. I feel like these complications and delays are going to kill me. No hyperbole. JFL, thank you for that info about Halaven. You are right that I can't afford to wait for it right now, but that info means I will put it back on my list of things I could try in the future.
Grannax2, here's hoping the zapping and faslodex will put you in a much better position.
* Scottish poet Robert Burns “To a Mouse, on Turning Her Up in Her Nest With the Plough, November, 1785"
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