How are people with liver mets doing?
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Lalady - I've been advised against having a biopsy done here. I get it because getting an IV here with the language barrier is an issue. I get through it but I'm glad I've had plenty of ALA IV's so the basic procedure is not a mystery to me. But with a biopsy solid and continuous communication with the team is important. Maybe there are other reasons but that one is enough for me.
We are choosing antigens for the dendric cell vaccing by extrapolation from human lymphocyte analysis testing, which is what I would have done if I hadn't had progression and something to biopsy. That was really my plan for the last 4 months ... so much for planning. The real issue is that I woke up with a nasty rash in a hot hotel room (AC fail) with nausea and a headache. My low dose chemo/spa treatment has not been easy. I'm getting the message that chemo is tough. In any case, any medical issue shakes me up so I was feeling down about the whole cancer mess. Thank god I was not in US where everyone is babbling on about hope. Hard to take when you wake up with a chemo hangover.
Abemaciclib-me baby. Great news. I am not sure I would go for abemaciclib immediately after hormonals failed, but with a round of chemo under your belt you are ripe for the abemaciclib in my opinion and deserving of a break. After this great experience on Japanese Xeloda Chemo Fun, I would delay the pleasures of Xeloda given that you went hard core on Abraxane (awesome job).
>Z<
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The problem with tumors is that the disregulated formation of capillaries results in poor blood circulation. It's so bad that 80% to 95% of the cells in a tumor are dead from insufficient nutrition ... the tumor grows only because the new cells are generated faster than they are dying off. In any case, the poor blood circulation results in poor delivery of drugs to the tumor as well and this is an issue with IV chemo.
Among my network of borderline insane oncologists is a guy who has his patients on a treadmill before and during chemo in order to increase circulation and the impact of the chemo. He's in Chicago if that sounds cool. However, anyone who is up for a jog or even a brisk walk or time in the sauna before or after chemo should go for it. Gemzar, for example, remains in your system for 20 minutes so if it doesn't get in your tumor as you are getting chemo, it's not going to get in. My doctor here wants a certain immune response in the tumor so he has prescribed hyperthermia before chemo, but hyperthermia acts against chemo in many ways and can kill cancer directly.
Here I am getting local hyperthermia. A disc the size and consistency of a small beach ball half inflated with jello presses on my back over my liver. A second jello ball presses up from the table. Claustrophobics need not apply. Something gets hot, but I am not sure what or how. When it is over, the surface of the body is freezing cold because all the blood is drawn in to the core. Strange experience. Not pleasant. Could not have taken a minute more but not difficult.
I present to the esteemed ladies of the liver mets forum ... my sorry a@# getting local hyperthermia.
Today I kept asking the nurse to crank it up and she obliged. We got to 43 degrees celsius for 20 minutes of the 40 minute session. Nurse was impressed.
Doc may be thinking immune response. I am thinking die cancer die.
And then I get an IV of delicious gemzar 600mg with a side of prednisone and an anti nausea medication. They chose a vein in my elbow pit (rather than wrist), got it on the first try (God is Great), used a heat pack from the beginning and ran the IV at full speed and the gemzar did not burn.
Here I am reading Immune System for Dummies. Highly recommended for anyone interested in immunotherapy as a treatment. The immune system has many moving parts so immunotherapy can mean many many things. It's important to understand at least the part you are considering manipulating where it sits, generally, in the scheme of things.
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Z- these are amazing dispatches from your experience in Japan. Sounds like you are doing very cutting edge and progressive treatment which is clearly called for to beat this beast. You are very brave and I am appreciative and also fascinated. I have ended up with such a western approach to disease and treatment that it has narrowed and biased me- great to see alternate thinking with science behind it.
Love the cover of the “novel” you are reading. Time for me to pick up one of these books. Trying to read some of the studies would be much easier.
hello to DD and hope you are well enough today to gently frolic together.
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Z: sorry to hear the hospital did not run ER, PR, HER2 status. I did not know that F1 or Caris doesnot charge patients if insurance does not pay. Good to know. I am sending uplifting thoughts to you. I feel like I am on a roller coaster ride everyday. Cry about every day then try to mediate and get back into positive mind frame and enjoy my life at this moment. Very tough some days.
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bans: what class of drug are you taking in the teial
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Claire, Abemaciclib sounds very promising and exciting. I'm so glad Abraxane seems to be going well for you! I think riding it out before changing sounds like a good plan. Not sure if I can do the same due to this crummy neuropathy. I guess it depends on what the scans say..
Grannax, Yippee for getting back home! So glad you are feeling better. Just hope the rash clears up soon.
babs, Fantastic news! Happy dance for you!
Z, I don't see how you are dealing with all this, in a foreign country, trying to get your biopsy results straightened out, not feeling so good.....you are a force for sure. I'm glad you are still managing to gt enjoyment out of the trip itself with your darling DD.
kaayborg, how are you doing? Have you found the next treatment yet?
lisbet, trying to look as much like your normal self as possible is no small thing. We already go through so much mental and physical grief, It is so important to maintain our dignity and self esteem. I hope you get the wig situation worked out. I've bought two so far, neither of which is quite right. I may go for a third.
mom, just sending hugs and support for you and Dani, hoping things get worked out soon and the next Tx works for a very long time. Wish I had such a strong and unwavering advocate on my side.....
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Hi Everyone. I thought you might find this encouraging. The NCI has just established 4 centers to push forward and expand Immunotherapy. Let's pray for good results.
https://www.mdanderson.org/newsroom/2017/10/md-and...
I've been following you all and praying. I've been pretty ill from Xeloda and trying to get back on my feet.
Mary
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Oops. It's NIH not NCI.
M
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Z, such an amazing adventure. I'm sure it's such a roller coaster for you. Thanks for sharing this experience with us. Keeping you in my thoughts and prayers, and yes, die cancer die.
Artistatheart, how is treatment going for you? I pray that treatment is killing your cancer too
To everyone else, keeping you in my thoughts and prayers. Praying that everyone has a complete response. Hang in there ladies.
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Z, your daughter is adorable, and I bet she is one smart cookie.
Thank you for the hospital list, and Kandy thank you for the note about watching to make sure the staff washes their hands.
Z, I would be so mad about the biopsy mistake, but agree you need to keep these people on your side. People like that woman who just said whatever to make you go away infuriate me. We are dealing with cancer here. When I had the Guardant liquid biopsy, I called the company to learn about the procedure for taking and submitting the blood. I had the instructions with me when I had the blood draw, followed every step, and was so pleasantly demanding that the nurse hand-carried it to the shipping department immediately. Having heard your experience and the story Husband11 told, it looks like being "detail-oriented", which is how I was recently described by a resident, is necessary for us. And even then, there are no guarantees people will do their jobs right, even if our lives depended on it. Oh wait, they do.
Christina, it is so scary and frustrating that they are being so slow to address your mom's situation. I have seen this kind of story before. It almost seems like they delay long enough that the patient can no longer take treatment and they save money. Please get anyone and everyone to advocate for her, and be a polite but very persistent in letting them know that long waiting times are unacceptable right now.
Babs, wonderful news of your good results on the trial. Lisa, hoping your brain scan shows nothing of concern! Claire, it's great to hear you have one more treatment option lined up for when you finish Abraxane. Hartrish, cheering you on for trying meditation; I am trying to get that going, too. There is good evidence that it will help us cope, and some reason to believe it may also work against cancer. Marylark, thanks for the article. It is encouraging to see this focus on individualizing treatment.Well, I had a lot of pages to catch up on. Hello and good wishes to everyone here!
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Oh, for my report. I saw the gynecology oncologist. He said my concerns about ILC and ovarian mets, and about my genetic and genomic tests and primary ovarian cancer were valid. But, the bottom line answer was that if there was enough going on in my ovaries to cause bloating and reflux, then it would be big enough to show on my scans. And if there was peritoneal involvement, we would expect to see ascites, which we have not. So I am less worried and glad I talked to him. He was super nice. And if we checked CA-125 (TM for ovaries and other things, not very specific) and it was high, a laparoscopy would be the follow-up. But that would mean going off Xeloda for two weeks, and it wouldn't make sense to stop something that is working for a known problem, to hunt for a possible problem.
The reflux has been less on the last few days of my week off, so I'm thinking maybe it is just X causing reflux and bloating. Or maybe my liver is still enlarged with the tumor clean-up process. Maybe an ultrasound would be a simple way of checking? I will ask my onc. I have no pain or hardness. Not sure I even want to see the gastro oncologist at this point, since my TM is normal. His staff is threatening an endoscopy. I would do it if my TMs were up and we could not see why. But now, not too interested.
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Z. You are truly so brave. Thank you for sharing all of your experiences with us. I am amazed at how you are dealing with everything in a foreign place. I hope this treatment kicks your BC on its ass!
Babs
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Shetland Pony - glad you got a moment relief. I hope the ultrasound is all you need to check, something non radioactive and non invasive. for once, right?
Liver hurts. Sometimes throbs when I walk. Then nothing. I know lesions are larger than I thought. RO showed me w hands how large. WTH? Cyberkniife not going to pan out. Too large probably and by the time they got all the appts and details in they will b etoo large at this rate, so TruBeam it is. Unless I go to a liver clinic in MI. See what they have to offer.
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Here's the update, and it is a dramatic one. I got my CT results back yesterday, and it showed multiple tumors in my cerebellum, as well as swelling, which is of immediate concern. I was admitted to hospital and will have surgery on Monday. Hard to wrap my head around this, as I was not expecting it to go to my brain. Great-looking scans over the summer gave me a false sense of security.
My family is researching clinical trials, but they haven't found anything yet. I will have to travel for a clinical trial, so I need to recover from surgery first. Then radiation. My mother has a connection at Dana-Farber, so we're looking into a consult there. Does anyone here have experience with getting a second opinion at Dana-Farber?
Z, I'm going to get in touch with pathology about how they store samples, thanks to the wisdom of your experience. Not sure what further testing we will want.
Okay, I guess I need to head over to the brain mets forum now.
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Thanks shetland. Caris would have been more useful, but the Foundation One report came back with some mutations. It will be interesting what the doctors do with this. . Most of them indicate that I should be on a CDK 4/6 inhibitor, and I just failed Ibrance. So that is interesting. But it does suggest that abemaciclib is worth trying. I have a version of the report redacted of my name etc. If anyone is interested PM me. I had a hard time finding a sample report for a breast cancer patient.
Genomic Alterations Identified†
CCND1 amplification
FGFR1 amplification
CDKN2A p16INK4a R80* and p14ARF P94L
FGF19 amplification
FGF4 amplification
GATA3 M401fs*106
ZNF703 amplification
Additional Findings†
Microsatellite status MS-Stable
Tumor Mutation Burden TMB-Low; 3 Muts/Mb
Additional Disease-relevant Genes with No
Reportable Alterations Identified†
ERBB2
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Z and others: How do you know if Ibrance or the hormonal has failed? I feel really stupid asking this question. Sometimes my brain is sluggish.
Also, my ER, PR,HER2 status was determined by liver FNA (fine needle aspirate). The core block is being saved for later F1 studies when I need the results-like trials or new tx. I will ask about Caris. I predict as time goes on, my MO will order fresh liver bx.
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generally you want a fresh liver biopsy on the latest active met to determine the next treatment.
we determine treatment failures mostly by scans ... something significantly different appears in the scan. i like to see an entirely new location or a 10-20% increase in size. tumor markers, when they work, can predict progression in scans by several months but they are only correct in some women some of the time. IMO you need several months data, including a period where you progressed, to determine if and how they are predictive... for you.
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LisaY...that is news so hard to hear. My heart goes out to you. In a way I think all sense of security is false in this game. When I celebrated 2 years on my first line I felt it would never end...than BAM progression out of nowhere because that's how it comes...out of nowhere.
I love this hoppin thread full of so much support. To think I used to feel alone in this. What I hate is that I just can't keep up with it as I'd like. I hope you all know that I am always reading. I check every morning while I eat a bowl of cereal and so many times I want to jump right in with reply but children need readied for school and so do I. Then at night so tired with a million other things that should be attended to. Please know I rejoice with all great news and think about each of you when you power through the wait of what's next or what does this new feeling mean. We all know the drill.
Stupid brain of mine can't even remember what I last posted here. Good news is that we've found a good treatment. Eribulin is killing it but me too. I think I'm finding my way around side effects though. The tumor fevers are the pits and they come with liver pain and massive headaches. Getting the timing right for taking Aleve in the fever cycles is what has helped. Figured out the pattern I think. Just had my second treatment of cycle one on Tuesday...one week delayed due to low neutrophils. Now we've added Neulasta so that should not be a problem again.
Also just learned that Merck will cover cost of Keytruda for me so may add that too. Yikes about that with possibly being harder still but I'm willing to put up with some yuck for a while. Let's at least get these tumors back to measurable and separated from each other before we let up a bit.
Hair's gonna go on Sunday night. Not excited about that but the ick of shedding like mad makes me ready. Have family pic scheduled for Sunday. Hoping to make it til then.
Off to bed I go. One thing I will say is I am sleeping well.
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LisaY - we all hope you find the trial you need. It is hard news, I cannot imagine.
Kaayborg - I'm like you, I read often and comment too. But more often I am checking in to see who said what.
Today I negotiated out of liver rads. Due to lupus / scleroderma it is not best for me, last time was months of flares. I am getting a biopsy which imo needed done first anyway. And will then be on different checo w a scan 2 mo out.
So, do you get to be awake for liver biopsy? Local anestetic?
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Z, with the ERBB2 alteration, are you a candidate for HER2 drugs? That could open up a whole new universe of options. I see you have an FGFR1 amplification. There is an FGFR1 basket trial recruiting out of NIH. That was the one I was planned to enter in four few weeks . . . had my biopsy not been partially lost.
Although I don't have enough slides for the Caris test required for the FGFR1 trial, I do have a bit of remaining sample and am having my HER2 equivocal status from IHC retested for FISH, given that HER2 equivocal is now treated if confirmed by FISH. My first FISH results were negative but very borderline. I requested my biopsy be re-tested with pathologist Michael Press at USC. Honestly, I might call his office back and ask if they can test for anything else while they are at it! I would really like to get myself on HER2 treatments. Given my super aggressive cancer, my gut tells me they will help tame this beast.
Sandibeach, was your FNA liver biopsy something they did while you were awake? Is it less invasive?
Bluebird, what is a liver clinic? And how do I get to one?!
Kaayborg, two pieces of good news. Eribulin is working and Merck will cover Keytruda. Not an easy path but you must feel some relief in that you have a working treatment plan now.
LisaY, what a punch in the gut. I am so sorry to hear your recent news. Sending prayers your way for a good second opinion and finding some options either in Canada or the US for you.
Shetland, I am glad the news from the GYN ONC was relatively uneventful. Uneventful is good in our world.
I agree with all of your sentiments that it is hard to keep up with this thread. But then I find myself adding to the issue by writing a lot of long posts!
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LysaY - so sorry about your latest news. Good luck with brain surgery and your next tx.
Bluebird - I was awake for liver biopsy and had local anesthetic only.
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Bluebird. I've had 3 liver biopsies. I was awake for all 3. The biopsy was relatively easy.
LisaY. I'm so sorry to hear of your progression. I hope you find a great new txtment.
Babs
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Kaayborg - I am thrilled beyond measure to hear your treatment is working. That is awesome. Lose the hair and get on with treatment for sure.
Bluebird - the difficulty of the biopsy depends on the target. Mine last one in september couldn't have been easier because I have a met near the surface just below my rib cage. In my case I have a terrible medical phobia but I've been awake for both. They gave me very something to chill my mind but they need you awake so they can communicate.
JFL - thank you for that comment about ERBB2. I wonder if I am HER2+ now. Of course since the sent the whole sample for F1 genetic testing, I don't actually know the ERPR/HER2 status of this new beast. Motivates me even more to get another biopsy and Caris testing when I get back. I appreciate everyone's thoughts and experience with these mutations. It's not where I have focused my efforts to learn but it is important now.
>Z<
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How likely is it that insurance will cover some advanced form of testing of a biopsy? Did any of you get insurance coverage for it?
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Hi Z
Are these treatments expensive?Thank you for sharing your experience.ai was just diagnosed with Liver Mets and started Xeloda today.
Rhonda
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Hi Z
Are these treatments expensive?Thank you for sharing your experience.ai was just diagnosed with Liver Mets and started Xeloda today.
Rhonda
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Hi Lisa,
I went to Dana Farber a week ago for a second opinion.It was easy to get an appointment and they were great.They asked to test my most recent liver biopsy and I agreed.The doctor said I could contact her with any new treatments and she would tell me
What she thought.I am receiving treatment at Sloan in Westchester -just started Xeloda.
Rhonda
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Thanks all! Very glad to hear I can be awake, not put under. Very very glad!
JFL - near me is U of Michigan has a liver clinic. I I understand from the onc that IU Health Indianapolis is a choice.
Depending on the biopsy, I may need a clinic. Or Goshen Cancer Center but that is general.
OK - I am taking control No bronch Monday. No GI scope either. I asked questions at 4 specialists offices - my DNP included - and had no answers. Was the pulmonologist even looking at the Oct. 2 PET CT? Since my report did not mention the lungs at all, what was he seeing? The high def chest scan from 2 mo prior? And did that mess clear up? So canceling first thing Monday morn. No answers, no patient.
Will have the liver biopsy.
And my oncologist has rxs written for Aromasin (exemestane) w/ Afinitor (everolimus). But that will change if liver biopsy proves to be HER2+ or the ER PR changes.
Here's my thing w that.
I was on Ibrance and there had been liver activity, quite lot - the Ibrance worked and liver cleared in a few months. But the lymph node masses grew, they got better at first then grew like crazy.
So I was put on Xeloda, low dose first cycle. Then stop. Rads. Then Xeloda and stop for 2nd rads. And then Xeloda for several cycles. The stop periods were about 3 weeks each.
The liver got a lesion double first one in Nov 2016. Then next scan showed 2 of them and doubled again. On Xeloda only.
I think, why throw out perfectly good meds when they worked. IF they can be taken together. The high dose Ibrance and lower dose Xeloda since NEAD in nodes now. And I am game for a hormone target too. Arimidex, I was on that first and long story short, stopped. Or the Aromasin.
I think I asked this thought / question before. Hoping for input. But will review and research too.
Does anyone know if Xeloda and Ibrance can be taken together? Or cycled one then the other. Opinions on why or why not do this. Keeping other tx in back pocket longer and hoping for best.
I would scan again in 2 mo to be safe.
Ibrance is swift when it works, at least for me. And is it for cancers besides bc.
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the new treatment kicked my ass. I am on day 3 in bed. Hoping next round won't be so bad. I had a reaction this time around so next time I assume they will premedicate me. Hoping tomorrow I'll be up and around. I miss Xeloda. Guess after 5 years on one thing your body gets used to it. I hope I adjust to this new one soon.
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Bluebird, here's my thoughts on doing both xeloda and ibrance at the same time. The conventional wisdom assumes a monoculture of the cancer. IE, that all cells are identical and thus one treatment at a time. Xeloda is an anti mitotic. It works by interfering with the normal processes that produce cell division, in some respects by substituting a faulty building block, and killing the rapidly dividing cell. If one assumes the anti hormonal treatment (plus ibrance) halts or slows the targeted cancer cell's division process, the xeloda should be ineffective and needless. But that assumes all the cells respond to the anti hormonal and cease to divide (or cease to divide rapidly).
If only some of the cells are put into dormancy by the antihormonal and ibrance, but other cells continue to divide rapidly, I can't see why the xeloda wouldn't fight the war on two different fronts, with two distinctly different enemies. But, I'm no Doctor.
It's certainly not worth doing if one of the treatments alone is working, but that isn't the case here. Nor would it be wise to subject a patient to potentially double the side effects, without benefit. But in your case..., it might be worth it. Especially if you can manage the side effects.
Here's an article discussing combining hormonal therapy with chemo plus anti her2 drugs, where the patient is both hormone receptor positive and her2 positive. They concluded that it was beneficial. It's not exactly the same, but its similar to what you are proposing.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC38603...
Here's an old article from 1985 (maybe out of date, but still raises important questions) that summarizes my thoughts on why they typically are not combined:
http://www.sciencedirect.com/science/article/pii/0...
Both chemotherapeutic agents and hormones are effective in breast cancer treatment. Their mechanism of action seems to be conflicting: while cytotoxic drugs are active on cycling cells, hormones prolong the G0 phase. Therefore, the concurrent use of hormones and chemotherapy could decrease their expected clinical activity. On the contrary, a review of the literature suggests that there could be some synergistic action with combined therapy. The problem is therefore to assess the efficacy of simultaneous vs sequential administration of hormones and chemotherapy. In advanced disease the general conclusion could be that simultaneous administration of combined therapy: (1) increases, although the difference is not statistically significant, the response rate both in pre and postmenopausal patients; and (2) the most important end point, total survival, is not statistically improved by simultaneous vs sequential administration. In addition, in the adjuvant setting combined treatment appears superior to chemotherapy only in postmenopausal, receptor-positive patients. No definite conclusion is today available in premenopause.
It seems to work in metastatic prostate cancer:
https://www.cancer.gov/types/prostate/research/che...
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