How are people with liver mets doing?
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babs, You are absolutely right. I can hardly wait to get into my appt Monday. This time I "get to see Him". I have a few issues to straighten out. I was so impressed and hopeful when I first met him, but lately he seems to be rather detached/disinterested in anything besides getting me off the cane. He has barely given me 3 minutes per appt. I hope we are just having a small lack of communication I can fix Monday. I am not a very assertive person until I get aggravated which I am very aggravated now.
bluebird, yes I could definitely feel that things were different than the last few weeks. In the weeks preceding this I had asked my Onc about mild but continuous bloating and he brushed it off. Then I brushed it off too in the last week as I think we just get used to a certain level of discomfort and I hate going in for that procedure so much! But finally I was uncomfortable enough that I decided I'd better check it out despite her analysis and WOW! Learned something critical......
Z, that is very promising about the AI recycling theory. I hope your biopsy is quick and easy.
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Hi Z- Here's a link for a discussion of secondline treatments- scroll about halfway down the page they discuss estrogen resistance. You'll see tha if the ER has mutated (which happens 25-40% of the time) it becomes permanently activated, and pushes the cancer cells to grow whether or not they see any estrogen, so in a case like that, an estrogen competitor like tamoxifen won't work, and you'd want faslodex.
I wish they'd discuss how we are supposed to know if a PI3K mutation happened, instead of an ER mutation, and now that cancer cares about PI3K/mTOR signaling and doesn't use estrogen at all to grow. In those cases, we would want an affinitor/aromasin or some PI3K inhibitor in a trial, in order to block that pathway, and force the cancer to revert to the old ER-driven pathway, making the cells re-gain sensitivity to AIs
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Z. I'm going to have to read your post several more times. There's a lot of information and a lot of options. I'm not sure I understand all of it but I'm determined to learn. I could be in your situation within a year. Now's the time to do the reading.
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Interesting article Cure-ious. My Foundation One test came back with the ESR1 mutation mentioned in the article which may be partly why I developed/progressed my liver metastasis while taking anastrozole. The report recommended Faslodex and said AI’swould not be effective for me. The good news is that is what I am taking, along with a Ibrance. Since my progression was within 2 years of my first treatment I’m wondering how long I’ve had the mutation and was dealing with side effects from a drug that wasn’t working or if it ever worked for me. I also had 2 other mutations that are common in lobular, probably somatic but could be inherited so my MO referred me to genetic counseling, which she wouldn’t do when I was originally diagnosed and treated.
I totally relate to what you have all said about needing to be very active in driving our care. For example I would not have even known about the Foudation One if I hadn’t been on these boards and asked my MO to order it. Thursday I spent hours and many, manyphone calls dealing with the office staff working on getting scan orders processed, correct timing of my follow up appointments and a few other things that should have been easy. Felt like total craziness.
Enough complaining. Late Thursday afternoon I drove to a local park with my binoculars to and saw a big white bird with a very long beak, turned out to be a pelican, fly down to the water of the small lake in front of me and spent an hour watching it and many other birds which was quite calming. It reminded me that often getting out in nature often is the best medicine.
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Kathy I’ve been doing acupuncture now, about 2.5 years after when I took taxol. It is helping but has been a slow process. My primary care doctor does acupuncture along with her Western medicine medical practice. She believes it would’ve been more effective if I had done it during treatment when I just started having problems. Hopefully you will have good results.
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Liwi, If it makes you feel any better, the original cancer probably didn't have the ESR1 mutation (of the ER)- when we take drugs, the cancer cells are prevented from growing (but usually don't die off, at least not right away) and they try mutating various genes until they find a mutation that lets the cell grow, then those cells multiply and that becomes the new (AI-resistant) cancer that you learn about in the new biopsy. So the ESR mutation arose because it allowed the cancer cell to grow even without estrogen. To stop it, you need Faslodex, which degrades the ER protein itself, rather than the AIs, which work by blocking (or reducing) the level of estrogen in the cell. Cancer cells take different amounts of time to grow on different organs because they also have to mutate other genes in order to be able to grow in the environment of bone, or liver, or brain- so the longer we are in treatment, the more mutant the cancer becomes. The focus moves to the cancer type growing in the liver, because that cancer is more dangerous. One question I have is whether, after many treatments and progressions, do you end up with a cancer that is more aggressive and that now would be more responsive to immunotherapy?
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Zar what I would do to have you right by our side when we go to this appointments. Gosh you'd smack them up real good and get rid of all the nonsense. What a dream.How is your little one taking all this? How is the school with her being away?
Artist I hate to say it, but, anyway for her to just say she "thinks", whenever they say they think it's not good. The same happened with my DD, she told them she knows the 2nd bleeding was the same exact way as the 1st, and they were no maybe it's just scarring, bullssssst that's for sure, sure enough after medical staff were up with her a whole night they scheduled her for the cystoscopy. I feel so bad they making things harder for you. The idea of not thinking that a reasonable adult KNOWS his/her body, but the books do, it's beyond understanding.
How upsetting that they were not in sync with you. Sending a PT really? Is there anyway you could have someone with you at the appointment, I think it could make a bit of a difference, to you they might feel more comfortable in disregarding, but if you have reinforcement it might just change the balance.
Babs, you are absolutely right about your chart, know that Dani first of all if she's in the same institution if she has to see a new doc, at the questionnaire she writes see chart, see chart, they could look it up on the comp. If these young assistants come in, she says she will only speak to the doc, she does not waste time with them. And only a fellow is allowed in the room with the doc, she does not want a bunch of residents gawking at her, right or not, she is not in a clinic, and she feels most comfortable this way. Sometimes it takes a minute but they get with the program.
Kayyborg that's really great that you feel it's going in the right direction.
NO1-2NV I'm suppose to be writing tomorrow all kinds of pointers, to different departments, they asked me too. And yes, I shall mention this person. NOT to believe.
Letmywifelive I dicussed this issue of these traveling doctors with a doctor, he told me that among them they have a name for these traveling souls – Delta professors, yep. The article made her seem down to earth. And it's nice to know that you are in good hands, but what I unfortunately found out is, it's almost best not to get THE best, THESE bests cannot and do not take the time and energy to think of the ppl that needs them the most. If they are thinking of the next speech, project how could they be thinking of the 1L ascite, or the pain on the right shoulder of so and so….Hope your wife gets the right tx for her.
Kathy pray on thanks.
Curi-ous love your thinking process. Oh how I'd love for you to be there too at the doctor. I think we'd save months of back and forth. Thank you so much for always being our hawk.
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BTW Dani was originally on Tamoxifen, but for 1 1/2 and then the mets got to her, so i don't think it helped her. Even if she was ER+
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Yes Mom, It seems when my DH goes with me I get more attention and time......BS!
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Cure-ious - The term immunotherapy covers a lot of strategies with a lot of targets. The timing issues turn out to be complicated. I've read that aggressive cancer responded better to immunotherapy. Later stage cancer may be more visible to the immune system because it looks a lot different from normal cells. In the US, immunotherapy is synonymous with PDL-1 inhibition and PDL-1 inhibition does require a high TMB. I was hesitant to move quickly on the immunotherapy options because of these reasons. However, in the US we're conflating a lot of different therapies when we discuss immunotherapy and there is a great variety in strategies.
Having done a deep dive into immunotherapy these past few weeks I have learned that some immunotherapy treatments do better early on. I now regret waiting as long as I did. There would have been advantages to having it sooner. Immunotherapy is viewed generally as something you leave for a last ditch efforts but being healthy with a strong immune system and light tumor load has many advantages with many immunotherapy treatments. Some of the tougher protocols simply can't be done unless you are basically healthy and able to travel.
Mom - We're back in our own beds tonight for the first time in 5 weeks. DD grew up on this trip for sure took me to appointments, got me what I needed while I was tied to IV's or getting my liver cooked, kept DH updated by chat, delt with my stress. She is in combined education where she is half time in a brick and mortar school and half time online. She started online school at home a month early to allow her to take this break.
Doubling up on prayers for Dani this week as the treatments must be a challenge.
>Z<
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WOWWOW first of WELCOME!!! It must feel otherworldly to be in your own bed! Definitely an education that is irreplaceable, life real lessons. So impressed how she put on her big hat and did what had to be done. Be proud, MAMA. Amazing that she is working from home, and it will give her a chance to be closer to you, how can you go wrong? You sleeping pattern probably is off, how are you dealing with that?
About the Immunotherapy,that's exactly how they view it over here, i do feel it they leave it for kinda last ditch. I know they have approved Keytruda for Dani, and he still pushed Neratinib/Faslodex, maybe Immunotherapy could make her weaker and not be able to do all the rads and the Y90, that's what i could think, i think Curi-ous meant something like this. If that's the case i feel i little better that she is not on it right now. TM's next week only, not that they are so accurate but...
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Mom - The immunotherapy they are looking at for Dani is relatively easy but still it may not be advisable to add another treatment to everything she has going on right now. Also, you want to follow radiation with immunotherapy within 12 weeks or so. It doesn't particularly help to do them at the same time.
Z
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Thank you so much Z, i'll keep that in mind.
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Also, biopsy showed liver lesions are SAME as breast cancer so that is a huge complication. So don't know what chemo it will respond to. Shooting into the dark, imo. Dr. Wanted me to give up xeloda but I refused. God no, after being nearly suffocated and smothered and strangled for months.. No way. So I was rx'ed low dose xeloda. And another chemo that should could maybe work on both. And a hormonal therapy that blocks my hormones from cancer cells feeding on it. I will be better off at Goshen Cancer Center. I am also checking into area precision genomics. I think I NEED it !!!
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Bluebird DE interestingly Xeloda works well for some for the liver, we were so excited when Onco agreed to let Dani have it, first she thought it was too strong for her, in any case it did not work for her. And yes, they keep saying that 2 different treatments going at the same time is been proven to be better. I hate to tell you, but i think Z has been saying it for a long time, they do NOT know wth they are doing. It's all a guessing game, They keep aiming at tx for HER+++ for Dani, even if in the last biopsy it shows that yes it's HER2++ only, meaning weak. ANd they so concentrate on this ONE thing, that they don't think openly that a lot more different pathways are going there and should be targeted. The way I see it, they still don't know why one thing works for one person and not for the other etc.....
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Momallthetime, Has Dani had the Y90 procedure yet? I had my consultation and I am considering going with it.
Robin
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rpoole. I was wondering the same thing about Dani. So, I guess you are a candidate? Good at least it's an option to think on.
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Bluebird What TX were you on when you had so much trouble? That sounds terrible.
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Robin tomorrow is the 2nd part, they actually infuse the poison! last week was the first part, where they do the angio to check the territory. So anxious. The kids are spending the next 3 days with us. After school tom till sunday nt at least. I'll let you guys know for sure. But the results of efficacy won't be known till weeks later. It takes time.
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Mom, I will send up extra prayers for Dani tomorrow.
Hugs from, Lynne
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Momall - I canceled out of the cancer center today and am being taken into the GOshen Cancer Center now. Oncologist will go over my med reports tomorrow. Appt asap. I hope. I would do 2 tx at once but they better be aiming straight at something and not guessing.
The Goshen Center does SIRT. Radioisotopes - beads - millions - into lesions. Only one in region and only a few centers in country do this. I don't know how it will be compatible with me due to extreme photosensitivity / fluorescent lights / radiation. There will be a discussion. Also the new rheumatologist for the lupus / Scleroderma / Sjogrens will be consulted this time. I will insist.
I told intake, this is too complicated. I need a full team now.
Grannax - the Ibrance / Femara was Nov 2016 to April 2017. Got rid of liver activity, a lot of it. But taken off since lymph nosed were growing and killing me. So oon Xeloda. And liver lesions grew to big honkers.
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Bluebird - good work getting into the right place. Please post your treatment plan as it evolves. We are all very interested in what a quality facility comes up with for you.
Roswell Park is also one of those small cancer centers that thinks outside of the box and _begin cynicism_ seems to be actually trying to cure cancer _end cynicism_. For example, they are one of the few centers that looks seriously at hyperthermia as a component of cancer treatment. Hyperthermia is not a money maker but its efficacy has been proven over and over. Why isn't it available everywhere?
In any case, I am not surprised to find Roswell Park driving CAR-T cell treatment in the right direction. They have engineered cells that both target the cancer and defeat immune suppression in the tumor. There is an active trial of this treatment that anyone near Buffalo NY should consider.
Mom- I think of you every time I read about the Roswell research program because they are in Buffalo. They never fail to impress my with the iconclastic but incredibly sensible direction of their research program.
>Z<
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Momallthetime I'm thinking of you and Dani and hope all goes well
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I'm thinking of you and Dani tomorrow too. Prayers for an incident free and effective procedure.
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Grannax2, Yes I have already been approved by insurance and got the call to set up mapping. But I have decided to go with a different IR based on a couple of comments the IR made to me. Right now, all the active cancer I have are the 2 liver tumors. And he told me I was coming to the end of my journey! Later in the conversation he blurted out "you don't have 2 years". I couldn't believe how cold he was. I decided if he has already written me off, then he might not be as careful. Anyway I always dump the Dr.s who talk doom and gloom. The comments that IR made sent me spiraling into a 2 week depression.
Momall, I will be praying for Dani and praying for a successful procedure!!
Robin
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Robin, I am stunned by what that doctor said. Nice move to get rid of him. He shouldn't be saying that to anyone. He doesn't know. And, you only have 2 liver tumors. What the heck?!
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Rpoole - another excellent decision. Yikes. How are you feeling?
Z
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Z, Question is..how are you feeling after your 5 weeks of treatment? I am actually feeling great since Ive been off treatment for a month. I could not do treatment until my blood counts came up and I have my port removed.
I have developed a clot in the vein that port is in and my arm is twice the size. I had 3 doppler ultrasounds done by 3 different people with 3 different results. I kept telling my MO and the vascular surgeon I was very concerned. They scheduled surgery way out until November 14th. I had a CT scan on Monday for a trial I am considering and they clearly saw 2 clots and one is in the interior jugular. Yes Im freaking out!! I had been calling the vascular surgeons office since Monday leaving message after message with no return call. I told the receptionist it was imperative they return my call. Finally I got my MO to call and they moved the surgery up to November 9th. Wow...still not acting like it is a matter of life and death. Then my MO tells me she will start me on blood thinners tomorrow. Really??? Don't you have to stop aspirin and blood thinners a week before surgery. And I have been dealing with this swollen arm for a month now. I couldn't even get my own MO to take it seriously. Just another story of incompetence.
JFL, I ditched 2 MO's because of their gloomy statements. I only deal with the positive!!
Robin
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Oh my goodness, there's a lot going on. Mom tell Dan I I'm praying for her and also for you and the girls.
Rpoole How could he say that to you? Yep wrong doc for you.
Bluebird. You've had so much happen. Sounds like your new center knows how to do complicated. I'm glad your changing to them.
Z how are you feeling? Are you waiting awhile to start any treatment?
I found out I'm not getting my PET until December, I thought it was going to be November. I'm kinda bummed about that because I wanted to have that over with and just enjoy December without scanxiety. But, in the big picture, it's not that big of a deal.
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Robin, if you have a choice of blood thinners, ask about fondaparinux, if you are concerned about hair loss. Anticoagulants are known to cause hair loss, and fondaparinux is one that may not.
http://onlinelibrary.wiley.com/doi/10.1002/rth2.12...
My wife experienced significant hair loss from deltaparin, which quickly reversed itself after she went off it.
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