How are people with liver mets doing?
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Grannax i'm not educated in these matters, my background is in set design for movies and television shows.
I brought up my experience to point to discrepancies between what our Mo's tell us and reality...it is my strong opinion that there's no real science to the current state of the arts of cancer care because they are analyzing the symptoms and not the causes, that's why the results are inconsistent and unreliable.
My cancer markers quadrupled while on AA, which is targeted for ESR1....and like many others you got off that tx quickly yourself....that shouldn't be the case. We should have greatly benefited, but we didn't.
I learn much more from our shared experiences. My genetic profile was conducted at MSK, they have their own department for that type of thing and my own MO is in charge of developing the use of blood for genetic testing instead of biopsy.
When X fails me, he will conduct a genetic blood test, he said. Hopefully I will qualify for Herceptin, the only drug that currently seems to do more than fail after a few months.
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candy. They have someone you can call at foundation one. They are very nice. There’s a number on your paper. They will explain all of your report to you.
That’s how I found out about ESR1. It had an actionable TX Faslodex. But my doc decided not to do that.
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Thanks Mia. I’m glad I didn’t stay on it one more minute. It was reeking havoc on my body and brain.
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Jill,
There are two major types within ESR1:y537s and d538. D538 responds to more meds than y537s. There are a range of drugs that have been found effective for y537s. They include SERDs, CDK inhibitors, HSP-90 etc. MSKCC is doing quite a few drug trials to address y537s. CDK inhibitor trial is going on at Dana Farber. It also depends what other mutations you have, and which one is the dominant one.
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Grann, you look fantastic and I especially love the way they did your hair! Hope you had a wonderful time.
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Grannax, you look great!!
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Candy, if your F1 report doesn’t list ESRI, then it was not present in that biopsy.
Griff, you can have numerous, diffuse liver mets and have Y90. You can also have disease in other parts of the body. Usually, the IR would like those other parts to be stable but that is not a firm rule. I have stable bone mets throughout my entire skeletal system and numerous, diffuse lesions in my liver and was told I was an “ideal” candidate. The key is to find an IR with heavy oncology experience and some experience with breast cancer. The analysis for colon and liver mets patients for Y90 is totally different so an IR with only that experience might tell you that it is too risky (which is BS). They have limited chemo options and most use Itinotecan which permanently decreases liver function over time with long-term use. I was told that by the first IR. He saw I was heavily pretreated and assumed my liver function was sunsetting from that fact alone, based on his experience in colon and liver cancer. I then went to an oncology expert with BC experiencewho said I was an ideal candidate.
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I started my trial drug, pan-FGFR inhibitor called erdafitinib (aka JNJ-43756593), yesterday. So far, so good. No side effects from the first two doses. Praying this drug works for a good while.
Bornfighter, thanks for the info on subtypes of ESRI. I just checked my report and my ESRI mutation is the Y537S type. I am going to look into that further.
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JFL, So you had Y90? Are you stable now in your liver? I’m going to ask the doctor who did my liver biopsy and paracentesis what his thoughts are. He was wonderful during the procedures. My onc said no but a second opinion can’t hurt-Jill
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My favorite NYC tourist pic We had just come out of the observatory tower and reflection pool is on the right I love the white structure in the background
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That’s a great picture Grannax
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JFL - glad to hear you have no side effects so far!
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that white sculpture is called the Oculus and was designed by Santiago Calatrava—a Spanish Architect. It serves as the entrance to the new subway PATH system and a large shopping mall that were destroyed on 9/11. The costs? 4 billion dollars. Like Grannax, I really love that site, most of all the Meditation Pool, a masterpiece of contemporary design
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Thanks Mia. I was also wondering who designed the meditation pool. It is brilliant. So much symbolism, so many levels of emotional meaning. I choked up the most when I was looking at it, feeling the feelings of the families who lost so so much, who's lives were changed forever. Is it also called the reflection pool?
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Yes Grannax, it’s called the reflection pool. It was brilliantly designed by Michael Arad, I too alway cry within a few minutes of being near it, it's so emotionally powerful. Pure geniality
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Thanks Grannax and JFL for the comments about the F1 report. All so confusing. I reread my report and for me it looks like PARP inhibitors may work for me, but no other recommendations noted. Maybe it is better to have MORE mutations than less (more meds to choose from). ???? I have 3 mutations.
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Dear All,
Just few weeks ago Miaomix wished my wife Sandra a long time with NED but it was not meant to be. Relapse. What is even crazier that it is in the same left breast, and IBC... Huge shock to us, we are devastated. Our MO said that straight from the beginning it had to be IBC because "changes were so big" but it didn't show up as IBC 1.5 years ago at all... was simply detected ER-/PR-, strongly HER2+. We did all CT and MRT scans now, and all is NED, all same as a healthy person, but spread in the breast is very fast - in 7 days breast got swollen and 1/3rd of it is red. We saw first changes ~5 weeks ago but they were minor (areola, nipple) and didn't change for weeks, and MO wanted to wait. We'll have the Multidisciplinary Board meeting tomorrow, hope they will make decisions asap. It is crazy and so scary. Seems Herceptin and Perjeta does an amazing job inside (liver) but completely fail outside. I hope we still have an option not to abandon HP treatment and have some local treatment in addition, like mastectomy... Chemo after only 10 months would be really devastating, as we had 12 cycles of Taxotere, and she hasn't fully recovered yet, and we have a 4 year old boy to care about... I am sorry I post here, as I know there's a separate thread for relatives, but my wife has liver involvement and therefore I mostly read this thread. Wish us luck...
Saulius
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Saulius, what awful news. I am holding you, your wife, and your little boy in my heart and hoping for effective treatment as soon as possible!
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Saulius, very sorry to hear this. If they don't want to do surgery I would get a 2nd opinion for sure. Hold on the good news of her being NED otherwise.
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Thank you from the bottom of my heart dear Kattysmith, support means so much to us... I just read about your success in a clinical trial and am so thrilled for you. I am new posting here, although I have been reading everything since my wife got diagnosed and you all gave me so much hope and always were so wonderful. What puzzles me most is that my wife reacted amazingly to THP treatment and her main tumor in the breast was gone after just 2 months of treatment (3 cycles of THP), and her liver mets were almost gone on liver MRI in December 2017 (in four months), and then "completely" in April 2018, and things have been "all clear" since then, and now, so suddenly, a relapse... but again, in the same breast only, and not in the metastatic organ (liver) or elsewhere, which is "good", of course, but... crazy, isn't it? Maybe there's hope she reacts again well to following treatments, like Docetaxel if it can be reintroduced into the protocol... or maybe TDM-1. Maybe IBC is still contained and surgery is possible (no lymph node involvement is seen in breast and chest/lung MRI)? Maybe radiation first? So many possibilities, they drive me crazy... These doctors and boards... I hate that waiting game. They are always so calm, like "come in three weeks and let's see", while we are simply dying inside. I am so anxious and restless, cried tons last week after the breast MRI. Sometimes when I see how my angel Sandra copes with this challenge, I feel we men are really weak and would be nothing without you...
Saulius
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Salius I'm so saddened by the news....I wish your wife a quick turnaround. It changed suddenly and hopefully it will be resolved quickly as well.
I'm just curious....this your wife made any major dietary changes prior to this development? Did you travel perhaps and ate restaurant foods often? Or if she was taking any supplements, did she stop taking them?
I know these questions seems inappropriate, but I always wonder what prompts radical changes...other of course that the drugs stop working....but if your wife was NED than those drugs were used as a precaution since there' was no evidence of cancer....it's all so confusing...
Yesterday, my last day before returning on xeloda, I drank more than usual in the company of loved ones—the truth is that I had stopped drinking althoughter for years—well...talking about grotty, I was sick all night long with heart palpitations, non stop peeing....misterious aches in my legs, imsomnia, and overall malaise. This morning I was still very sick. I'm terribly weakened, with sore muscles, shallow breath. I literally staggered to the kitchen to make myself a cup of coffee....all this misery from a few glasses of wine and Prosecco...I guess we are all in vulnerable states regardless of how good we think we feel sometime.
Best wishes to both of you....
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Thank you HLB, thank you all, I'll keep you all posted in the following days. We both with Sandra are for surgery too. I think they had to do it the first time she got NED. We questioned that but maybe they believed all is gone as it was a CR. Sure, they did want a young woman to have her breasts but cancer stem cells might survive... And again, please forgive me for writing these posts, as you all know each other so well and we are new here... just wanted to share with someone who is "in our shoes"...
Saulius
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Miaomix, thank you for your compasion. There were no changes in diet, no travels, just worries as her parents are divorcing. We also were doing immunotherapy (DC/CIK) additionally since June, but I know several people doing it and it being quite effective in some cases, so wonder if that could have triggered something? Well, they use interferon-alpha and gamma to activate dendritic cells, and those (I mean inf-a and inf-y) are not easy on the body, CIKs also, but as we consulted immunologists they said it is a well known practice and is not known to cause such things... and again, liver is clean, so to say these therapies were not working would be an understatement because liver is one of the best mediums for relapse for known reasons. Phew, my head is spinning. Now we somehow have to brush things aside and look forward, and hope for a comeback. Ehh, I am also so sorry you struggle after the party... water with some salt and honey, that is what we use to get fluids and electrolytes...
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Saulius— what a beautiful name by the way, like that of a Roman senator—thank you for your advice. I instinctively reached for a pinch of sea salt when I ate breakfast this morning...and I am feeling much better.
there have been a large number of studies that point to persistent stressful conditions as the start of a chain reaction that blocks the production of melatonin and produce inflammation that, they believe, leads to the development of a terrain conducive to cancer growth and mTor overactivity.
Of course there are also additional environmental, dietary, and genetic factors that contribute to its various formations and development in the most compromised parts of the body.
I myself keep stress to a minimum and eat mostly imported recognizable foods that I cook myself from scratch. I distill and then carbon filter all the water that I drink and use in my cooking. When I eat out, I go to only 3 restaurants that I have inspected to have the cleanest kitchens and intelligent staff. That's how much I have grown to distrust our way of life.
If they have allowed asbestos in talcum powder, that negatively affects the health of babies for years, full knowing the consequences....well....I rest my case....
So, although I'm sure you're already doing this, whenever possible try to shield your wife from stresses, the ups and down of everyday life. You might want to consult also with a functional doctor about adrenal support. Fighting cancer drains our adrenals....which leads to inflammation, which leads to conditions favorable to cancer growth...etc etc...
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Phew... The Multidisciplinary Board (MDB) today was really very hopeful: they all were very warm and talkative. As most oncology drugs are covered by the state in Lithuania, there are procedures how drugs are prescribed. They called Sandra's case really exceptional in how she reacted to treatments and were all willing not to rush to get her off trastuzumab-pertuzumab protocol as it provides "best protection" to her. In the end they said that "progression today is not completely proved" as it was MRI data (damn, I didn't know MRI doesn't really distinguish between IBC skin infiltration and other conditions like mastitis, ectasia or other inflamations), and ordered a punch biopsy for tomorrow. They also said situation was not in "life threatening organs". Biopsy results will come in 7-10 days, then we'll go to MDB again, and final decisions will be made. I believe, from what I felt today, decisions will be wise, and as they said it is ,,worth to wait a bit more". Well, I read over what I just wrote and it all seems so calm and in rainbow colors... but I know I will start feeling anxious tomorrow again. Latest...
Miaomix... for sure many diseases and conditions are induced by "civilization". I am no tree-hugger, no hippie, and I don't even say that capitalism went to far. Our greed went too far...
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BSandra, they sound like a thoughtful group! Most of us don't get a regular MRI, and apparently it is so sensitive it often detects 50% more things than anybody even knew was there, based on the CT/PET and bone scans. They know much of the cancer remains responsive, so don't drop the drugs too soon, just figure out how to deal with the part its not getting. Harder to wait but better for the long-term outcome to be sure what the best course of action is.
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Also, speaking of immunotherapy, a recent report found that adding a CXCR4 inhibitor drug makes immunotherapy work for breast cancer, where the mets are apparently very fibrotic and hard for the immune system to get at the cancer cells, this drug makes a big difference. I've seen where CXCR4 inhibitor was being tested in a clinical trial in combination with Halaven, but hopefully now they will add in some Keytruda or Opodivo...
https://www.npr.org/sections/health-shots/2019/02/...
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Hello! I've been reading posts in this forum for almost two years; never posted anything but have found strength and hope in other's posts. now I felt the need to write a few words.
To summarise: My mother has stage IIIV Breast cancer, with bone mets. Diagnosed right off the bat two years ago, the doctors found it by coincidence. She's been in fantastic condition for 98% of the time. She's in her 50s, very active. The last month or so however, has been horrendous. They have found mets in her liver and she has been hospitalised and very ill for weeks.
They have been draining her for Ascites the last couple of weeks, and they did a biopsy of her liver, where they discovered liver mets. It really came out of the blue, as she’s been feeling good and living her life very normal. The biopsy showed the cells in the liver had attacked the liver very quickly and viciously. They were considering whether it was triple negative, but it turns out it’s HER2+ (sorry if it’s not the 100% correct term, I’m no doctor). As well as Chemo they are giving her an injection every three weeks in her thigh.
She's on taxol now, and have had two rounds of it so far, but is reacting terribly to it. Very sore throat and mouth, fatigue and she struggles with lots of Ascites in her stomach. She's had taxol before (months ago) and didn't feel a thing then, so this is new. I'm scared they might need to take her off it. She’s not eating enough and can barely talk. She has not been in any clinical trials and her oncologist, which is one of the leading experts where we live, says they want to wait to get her back on their feet before they consider that.
Would mean a lot to me if anyone has any experience with this or any advise to give.
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Janeyy, wow that is awful how quickly things progressed! I have bone Mets for almost 7 years and was doing pretty well the whole time, until I also got ascites. Not a lot but noticeable. It's showing up as cirrhosis but I think it's probably liver Mets. I started abraxane and the ascites were gone after one treatment. Maybe she could tolerate abraxane better? It's also a taxane. Wish I could be of more help but I think they are right to want to get this stabilized before doing any trial. Good luck to your mom. Things can and do resolve very quickly on the right treatment. You just never know. The taxane give me a lot of pain in my legs.
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