How are people with liver mets doing?
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LMWL,
I'm not as familiar with MRI measuring/imaging, but I know that PET scans use "slices" that vary in width from machine to machine, depending on the machine's age. The smaller the slice, the more accurate the measurement, but also, the more the patient is exposed to radiation. Depending on where the slices start in a lesion, they can miss the widest point by a few mm, and the next time catch it. So it might seem as if a mass has grown, when it's just been imaged slightly differently.
To me, what makes more of a difference in the PET scan, if the measurements are "almost" the same, is changes in the SUV value. SUV is an indicator of how active a lesion is, and more pertinent in deciding if any specific mass is fixing to cause trouble.
From the MRI, and the CT, it looks like Xeloda is a great idea. Multi-focal disease does better with a systemic treatment. Further on down the line, if a consistent large lesion keeps causing trouble, while the rest are resolved, then you can start investigating mechanical methods of suppression (i.e.: radiation or surgery).
What's extra nice about Xeloda is that it crosses the blood brain barrier, meaning that if there are any super teeny cancer buggers in the brain, they will be addressed before they even get half a hope of causing trouble.
I really enjoyed my Xeloda months (13). Tolerated the pills well, and my hands didn't get too shaggy.
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Thanks for the echo, kaayborg! Sounds good, bstein!
Gramen, thank you for sharing your story with us. I also am so grateful for this site and all the lovely people here who are so important to me. We help each other cope and live well.
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Yes Zar thanks I did read it, very scary and interesting. Thanks. And your words are exactly how D sees her life, and we tag along. That's one of the many reasons she chose not to tell anyone. It takes too much energy. Can one imagine telling "everyday" people all the things that I write here what she goes through, or anyone here? Oh, please, they would think we've got a mental issue. What "normal" person could put up with this constant, the constant scans, anxiety, decisions and then still be "in" this world. Everything is just peachy.
Bstein exactly. No shoulds. And life is too precious. Loved what you wrote.
Gramen how wonderful that you are able to give us this better news. Let's keep hoping.
Shetland you are ok, how is Afinitor treating you?
Letmywifel I do agree with Zar it's probably a different view. But interestingly, that's what I have been asking the boards since last week, Dani is on Xeloda since October, the last 3 blood tests, Alkaline Phosphate has been going up , like jumping up quite a few numbers for her. I am definitely concerned, because her Blood Tests have been a mess lately, I am not sure if it's from Xeloda or Ixempra. She actually was not able to get Ixempra as usual due to the extremely low numbers, so my question is: Is the liver acting up?? Her CA15.3 that Onco says would point to treatment performance was good and it has been going up, slowly but surely. I am very worried.I would love any ideas.
This Wednesday she gets her next Pet/CT (just 6 weeks from the last), Onco was not shy in saying she wants to make sure, knowing how Dani's monster has never been quiet. I am even wondering if Pet/CT is a good modality for the liver? I hope so. It's just in your case the jump came so fast. Your wife is on 14 on 7 off? Dani was just changed to 7 on 7 off, 2000 a day.
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mom -
My wife's liver function testing have always been unpredictable. When she was developing liver mets (we know now tracing back her rise in TM) over a period of 3 months, her Alk Phos was actually going down. Now that she started with Xeloda ,it shot up by 25 points. So hard to figure out what's going on.
She is on 14 on and 7 off and right now on her second cycle.
Is Dani right now on Xeloda and Ixempra only or something else as well ?
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Hi Dani is on Ixempra/Herceptin/Xeloda and Xgeva every 4 wks. She has innumerable liver mets that just exploded from 2 in a mere 4 weeks. At best it stayed stable. We'll see now with the Pet/CT this week. Can't say her numbers are full proof not at all, but it has been going down, and then all of a sudden. I think Onco is worried too, hence her saying it would be a good idea to scan 6 weeks after the last one.
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Z--thank you for posting the link MIA in the War on Cancer...
I think in the long run the most important thing might be:
"The Sukhatmes hope to create a way for patients to document online the treatments they undergo. Harnessing the experience of cancer patients is also a goal of the American Society of Clinical Oncology, says Lichter, the group's CEO. The society wants to compile and analyze patient experiences nationwide to give better guidance to patients and doctors. "There is a lot of knowledge out there, but it is locked up in individual files and records," Lichter says."
Too much knowledge locked up in patient files. There needs to be an international data base on cancer treatments and results.
Michele
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Miche - I agree. I get so much information just listening to people talk about their diagnosis and treatment here. Not a trial of course, but there is still a lot of information the histories of real patients. Not sure why it is so badly managed. My records, for example, are spread across 7 institutions and impossible for anyone but me to pull together at this point. And it is taking me a lot of time to do it ...
>Z<
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My wife's TM came down after 5 months or continuous rise and with 2 weeks of Xeloda. Hoping that this means Xeloda has started working but I will be keeping my fingers crossed for now.
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That's a great sign and a great start Letmywifelive. My wife's response was slow at first, but picked up steam over time. Wishing you and her the best. Keep her hands and feet moisturized to reduce the peeling and cracking.
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Letmywifelive,
I am rooting for you both. Xeloda has been good to me. After just 3 months on it, I had a great response with no signs of the two liver mets discovered last November and all my bone mets, of which there were numerous, are sclerotic. I hope she is tolerating the drug well.
Timothy, what does your wife use on her hands and feet? I haven't found anything that really helps much - I go between a variety of lotions but nothing seems to help. They really just mask the condition.
Thanks!
Amy
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Thanks Amy and Timothy. Hopefully this drug will work for her and for both of your needs.
My wife is not facing any SE yet (besides being little more fatigued than normal) but MO told her to use Bag Balm if she experiences H&F syndrome.
Also, blainejennifer mentioned that Xeloda is capable of crossing blood brain barrier, so potentially it can kill off tiny micromets there before it takes root.
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mom - when are scans scheduled for Dani ? Hoping / praying that things will be under control, but in case things turn out to be otherwise, has he MO suggested the next course of treatment ?
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First gr8 news, thanks for sharing. Here is hoping for the best!!
Tomorrow is D day! Just hope they give enough specifics in the Pet/CT. I wanted to change the place for scanning, but this one doc could supposedly access immediately, so i backed away. Hope not to regret it. And, not she didn't say anything, she might say trials, which is a bit scary. Also, depends if she could finally get her Ixempra infusion, because her platelets have been quite low. So, I kinda left it open for discussion. Will keep you guys posted. Thanks.
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mom - praying for the best.
Trials may actually be a good thing unless it is something like a brand new Phase 1 immuno trial. Those are little risky in my opinion. Typically trial patients are very very closely monitored and it is always better to go for trials while the patient can still take it. The more the disease progresses, the less like it is to qualify for a trial (and some of them are very promising). Hence the theory in support of trials is that, use it even when there are standard therapies remaining.
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It's something I've been reading in these threads, thanks so much. It's just it's scary. And, to be perfectly honest it would have to be soemething manageable distance wise from home. She won't travel and leave the kids. This is truly her whole raison de vivre, as they say. Copied from Google, just something that came to mind. It's a big mystery, let's see what tomorrow brings. Thank you so much.
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So not the news we wanted to hear, everything is more FDG avid, larger lesions, AND new ones.
The liver is bilobar hypermetabolic numerous, increased lesions size, the works. ASCITES, i hate this word, it was not there SIX WEEKS ago, yeah, I am kinda screaming, quietly, BUT...it's insane. This thing was holding Jan. and then it just exploded. I guess the ALP does mean something. I don't know today's BT results, but i'll see it at the end of the week.
A new Lung nodule. Osseous active with multiple increase in degree of FDG and size!
Email with Onco, she needs to discuss it - but :
She's gotta think it through - BUT is considering IMMU132 - she said they just opened a cohort for ER+. FDA approved for TNBC. Being that she had a high level of AR she said D could be considered for it. Still working through.
I emailed back how about radiating the lung nodule, and I just thought - how about biopsy of it! What could it show?
How crazy is that????
I checked https://www.breastcancertrials.org/bct_nation/publ...;jsessionid=F2281FBD0B770FE869C3E897C797CD34?trialId=736385&trialName=IMMU-132+for+Metastatic+Breast+Cancer&cid=164565If the ascites are there, they better get a move on it fast, time seems different for them. So I think, they see this all day long, because she could have these results by 4sh, i got it 430, why didn't she brainstorm already??
So here we go again. NO freaking break for her. She doesn't know yet, I could not bring myself to tell her at night, first she was busy with the kids, and then later i think gets too late. She knows something is up, I usually call her the same day, she knows I will get the report, but she knows something is being cooked, she doesn't know how bad it is. Something is gotta give.
Open for ideas.
Take good care,
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((Mom)) - PM'd you. A trial with a targetted anti-cancer missile is a reasonable idea.
>Z<
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mom - not sure what to say. It is not what any one of us wants to hear about our loved ones.
This is a critical time for decisions. On one hand you need to control the disease right away. This may mean (guessing) some sort of chemo. On the other hand there is the trial. If I were you I would have asked the MO how the patients are doing in the trial and and what does the MO think the risks are to Dani's health if the trial does not work out. In essence the question in my mind is that can Dani afford to wait for a few weeks / months to see if the trial works or not. The MO should provide a very logical answer for this question.
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Mom, my heart is breaking! You have been so strong and brave for your daughter. I really hope this trial will be the answer. Life is so confusing, wonderful and randomly unfare. Hugs and love!
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mom, also the MO might need to present your daughters case a rounds to get a group consensus on next steps. Outside of my breast cancer diagnosis, I am a Nurse Navigator for breast cancer patients. I have attended rounds many times over the years where the MO and radOnc get together to present cases and brain storm ideas. So your daughters MO will get a plan together and brain storm. Time is of importance but when things get complex your MO likely needs to process all ideas.
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Mom, no advice to give, though I think what others have shared is wise. Sending hugs, thoughts and prayers to you and to Dani.
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Mom,
I am so very sorry to hear this news. I was hoping good news was contagious! I don't have any advice to give either, just know we are thinking and praying for you and your daughter.
Amy
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mom- you and Dani are in my thoughts. Lots of love to you both.
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I do feel bad in sharing such a Debbie Downer stuff , I don't wanna scare those of you that are doing well. Many people do respond to treatments. There is something with D's monster (hate the C word), that does not respond to treatments. With all the testing they are still not able to put their finger on it. I am not even blaming the ppl that are trying to help her, but there is something that is driving this thing and Medical field cannot figure it out yet.
Hey Z – thanks so much dear, for your fountain of knowledge and your will to be there!! Checked the PM. These are the trials Onco hopes to get her to.Thank you.
Kayyborg thanks for your support. Thinking of you.
Bstein, yes, I am trying to be reasonable, leave my heart to the side ( it's so to the side I actually don't know where it is anymore), and keep my brain logic in the forefront. Then, I understand that I have to be patient. After reading these lovely warm posts, I'll hold myself back and give it sometime. Yes, Onco has a tumor board. She will be discussing with others I know. At the same time, let it just be said, when I was a goodie goodie and gave things time, or excuses it came back to hit me in my face. Just saying.
Letmywifeliv yes, it's a good question? With these liver mets going berserk, can she afford it??
Amy, right? Maybe it will rub off on others. It is good to hear good things too.
Didn't tell D yet. Such a coward. I am just gonna say it's not better. At least for now. She doesn't like to know where exactly e/t is anyway. She knows what she feels, she knows her body well. i'll be a good witch, I'll say things in phases.
Waiting...
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Momall, I am thinking about you and you and Dani are in my prayers. I hope they find the key to stopping the monster. I know this is all physically and emotionally draining for you. Please take care of yourself.
Hugs from, Lynne.
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I have put the trials that I think Dani's onc has in mind below. Dani's onc is at cornell and one of the leading researchers on TNBC, so this will be of interest to many here. Also if anyone has any experience or expertise in this treatment strategy, bring it on as it will help Mom.
Dani's onc is interested in anti-biody drug conjugates (ADC). You take an anti-body that is selective for a receptor common on cancer cells and you attach it to some chemotherapy drug. The receptor these trials target is TROP-2. This is a receptor that is common on breast cancer but mostly absent on human cells. What I don't is how common TROP-2 is on MBC ... because this is a bit of a crap shoot ... if Dani's cancer doesn't express TROP-2 then drug won't find the target.
The ADC being tested in these trials is Sacituzumab Govitecan (IMMU-132). Sacituzumab govitecan has an anti-body that targets TROP-2 attached to SN-38, the active metabolite of irinotecan. Irinotecan is a chemo developed from a chinese medicinal that was approved for medical use in the United States in 1996. It is on the World Health Organization's List of Essential Medicines, the most effective and safe medicines needed in a health system. However, it is still a very toxic drug, causing diarrea and severe immunodepression.
The goal here is to be able to increase the dose of a drug that is known to be effective, while reducing the side effects. It's a drug primarily used for colorectal and small cell lung cancer but it seems like it has the potential to kill be "broad spectrum" in the sense that it will kill all cancers. It looks like one of the drugs that kills all growing cells. The drug acts by inhibiting DNA transcription, which should pretty much stop the growth of any cell. This is good for dani because her cancer has mutated into a multi-headed beast some TNBC, some triple positive, etc.
Phase I/II Study of IMMU-132 in Patients With Epithelial Cancers is a trial of IMU-132 that has been going on since February 2013. They have a lot of results with relevant safety data even though every cancer EXCEPT for MBC was included in the trial.
They appear to have opened two trials for MBC based on the results of the first trial. One is phase II the second is actually phase III. Neither are recruiting yet, but it sounds like cornell knows that they will open soon.
Phase II Study of IMMU-132 Alone or in Combination With Carboplatin in Patients With Triple-Negative Breast Cancer
Phase III Study of Sacituzumab Govitecan in Refractory/Relapsed Triple-Negative Breast Cancer
It seems that anti-bodies can be used to make any chemo a targetted therapy, so this is a cool line of research to watch.
>Z<
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Momallthetime, I hate how the beast seems so wild and relentless in Dani. I'm sure the oncs are thinking very hard about what the next step should be. Give them a photo of Dani and her kids to take to tumor board.
Don't worry about scaring people here. This is the place we can be real. We help each other in whatever way we can.
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mom I don't have anywise words to say but I would like to let you know that I really really hope that something is going to come up to help Dani.
I'm like Dani, I don't like to read the reports or listen to the Dr. But I have to. My husband is great in advocating for me.
I think in my mind I pretend that none of this is really happening to me.
Take care
Ziz
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Mom, Prayers going up for you and Dani. I pray the magic bullet is just around the corner!!!
Hugs,
Robin
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AmyQ, regarding the skin creams, I think my wife would agree, that nothing really works great, but its certainly worth using. She mostly uses a urea based cream, sometimes uses Differin, which is a retinoid cream. She's even used a lidocain cream to try to numb them. Just remembered, also uses salicylic acid. Here feet have lost all tough skin and callus. Mostly her symptoms are burning sensations. Even her lower legs get a burning sensation at times. Its a real problem with restless sleep.
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