How are people with liver mets doing?
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Hellou. Zarovka, I have asked about the imunogenicity of BC cells and the Dr. said thar all cancer cells try to hide. He said that the therapy you are on adoptive cell therapy should work as well. With the fever he is inducing the immune system and im combination with check point inhibitors in 1/10 of usuall dosage he has good results but of course it works for some for some not. But he has very high succes-60%. Mirka, it is small private clinic, so you need to pay for and it is rather expensive. I am also part Czech, I was born in Prague;). Other treatments to consider is antabus, there is clinical trial in Olomouc for MBC patients. And also ulipristate acetate. I try to post some links her
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Amethyst - You are not going to die in 6 months but it is a tough road and definitely not good news ... hence the hugs to which I add another.
I have a lot of concerns about affinitor which can have difficult side effects and has NOT been shown to increase overall survival. Ask about Overall Survival statistics for this drug and get a second opinion before you start.
If you have not been on ibrance or kisquali, this would be the go to treatment at this point. If you have, you can still continue on ibrance or kisquali and swap the underlying hormonal treatment. You can also add other targeted therapies to faslodex, but it works on its own and that is my choice at the moment. In any case, Affinitor is not usually used as a second line treatment and it is not an obvious choice, IMO.
If that something in the liver can be biopsied ask why it is not being biopsied. Cancer changes as it metastasizes and needs to be checked frequently.
>Z<
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yes Zarovka is right, Amethyst you should have biopsy or if it is only one and is possible to resect it, than resection. my liver met was different from original tumor, it changed proliferative activity from Grade 3 to Grade 1 and lost progesteron receptor. Afinitor I dont believe much in this drug, it is originaly imunosupresive drug for transplantation patients and when generics came to the market, they found new indication. But that is only my notion, it did not do any good to my frien
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Grannax, what is IF, please
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Maaaki. IF is Ibrance and Femara
Amethyst. It does not look like you've ever taken Ibrance. I wonder why? I've taken it and Femara/letrozole for a year. I think the TX that helped my liver mets the most was the y90 procedures I had done in April and May. But, my other mets in lung and chest have responded to my TX.
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I was on the Ibrance/Letrozole for the last year. My last PET 4 months ago was completely clean. I was hoping for more than a year on it, but... it is what it is.
I'm so utterly confused about the whole medication thing. My Onc is usually very good about prescribing the best thing for the time. I'll do more research into the Afinitor, and talk with the doc.
Sadly, I was alone at my appointment this morning. My hubby forgot I was getting test results, and he wasn't expecting anything major, so he was at work. I really wish he had been there, because I have a feeling there's a lot I just didn't hear after I heard my Onc say the cancer was back.
I'm going back in 2 weeks for my first Faslodex injections. I'll ask some questions then, about biopsy and such.
There's just too much to know and process and adjust to.
The worst thing right now is figuring out how to tell my daughters. My oldest graduates high school in June, my youngest is a freshman. The older will be okay when I go, I'm pretty sure... the younger? I worry about her....
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Amethyst, please don't write yourself off! I had widespread mets to liver and now 15 months later- there is no active disease. Being stage IV, you do have to prepare yourself for progression and that in itself, is a mental game. And as Z says, it can be a tough road. It doesn't hurt to plan fun things to keep yourself living your life. I bought a house and now planning a cross country trip in 6 months in a camper. Life is different, but try to live each day and not die each day. Keep posting, we understand.
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I have such a hard time dealing with this! I was so happy my liver panel was normal-and then someone said your liver can be 90% covered with mets and still have normal panel. WHAT?
Amethyst, I agree with the others-don't write yourself off. I am a nervous nellie-and the women on here are amazing and so helpful. A great place to vent.
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Amethyst - You are not going ANYWHERE, except for a second opinion with your husband present. You want to go to an NCI designated cancer center as these have met stringent criteria. Follow that link and go to the one near you. These are important decisions that can't be made while you are in shock from hearing terrible, frightening news.
Start Faslodex. Faslodex alone will control the mets and it is a great option. Whether you add something else and what that should be is the question. I would continue on Ibrance long before I started Afinitor, but will get much better advice at at an NCI center. You need to have that second opinion relationship in your pocket going forward anyway ... so please set that up.
Everyone can relate to having your brain shut down in that situation. You have to take the time to get to the right decision, and that includes the time to process what is going on and get the support you need. You have time.
>Z<
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My cancer center is associated with the Fox-Chase cancer hospital in Philadelphia. It's a suburban hospital, but it's a Fox-Chase cancer center. Does that count, Zarovka? We've talked about getting a second opinion, and there are so many teaching hospitals and cancer specialists in the Philadelphia area... It's just hard to find the time to get out there. My husband just started a new job a year ago, and he has very limited PTO. We're hoarding as much of that PTO as possible for a cross-country drive to Colorado this summer. But you're right... a second opinion is a good idea...
My onc is a wonderful doctor, and the nursing staff has been incredible over the six years since my initial Stage 2 diagnosis. I guess it's emotionally hard for me to consider seeing another practice when I've become so attached to these people, if that makes any sense.
Thank you so much for your input. It's easier hearing these things from women who have lived it or are living it. And it's unspeakably encouraging to see ladies here with the same diagnosis as mine who have been fighting for so long.
*deep breath* So I guess next week is asking some questions of my amazing onc, and exploring a center for a second opinion.
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Amethysbutterfly, I wonder if we both go to the same cancer center? I go to the cancer center at Crozer Chester Medical Center. It is also associated with Fox Chase and is just outside of Philadelphia.0
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Amethyst - A second opinion is a SECOND opinion. You stay with your current center but you get a second perspective on your situation. Cancer is complicated and requires more than one look to get right. Pretty much at every decision point you may need a second opinion. This is accepted and not a betrayal of your cancer center.
National Cancer Institute (NCI) centers are not just teaching hospitals. There are only 60 or so NCI centers and they meet the standard for the highest cancer care. The link in my previous post will take you to the list of NCI centers.
The issue regarding your husband's PTO is VERY important. He needs to protect his time as the demands on his time will only increase with time. Who else in your network can come with you to these appointments ... this may not be the best use of his time.
>Z<
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Lynnwood, I've been going to the Fox Chase center at the hospital in Pottstown, which is very near my home.
Zarovka, you're absolutely right. I'm thinking about this way too emotionally! Pretty much my mo, though. I emotionalize everything! Lol Yes, I'm the one who cries at certain Subaru commercials on TV...
My hubby works from home 3 days a week, which, I have a feeling, will become very handy in the coming days.
As for other companions, I can think of three ladies off the top of my head who would drive me anywhere any time. One is simply a dear friend, one is a b/c sister who has been cancer free for 15 years, and one is a nurse who does in-home care for cancer patients. Any one of them would be a great take-along to an appointment.
I looked at the website, and I have my little eyeballs focused on a particular hospital already. My next adventure will be two-fold:
1. Figuring out how one goes about getting a second opinion, and
2. Overcoming my terror of making phone calls to people I don't know! 😁
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Amethyst - When I am dealing with a transition I am a blubbering dysfunctional pile of tears. The ladies here remind me of the most basic things. A mother cannot over-emotionalize the prospect of leaving your child motherless. But somehow you also need to get support and the best advice possible. You have to figure out how to have all the emotions AND aggressively manage your care. I really don't know how we do this, but we do. We each have our own way. You will find you are pretty tough. Personally, I depend on the ladies here a lot.
>Z<
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Lots of great info on here as always and advice. I struggle to understand the technical numbers bit as I know nothing about this yet.
A interesting turn of events yesterday. Went in for my liver biopsy. My ct/Mri showed shadow. Pet confirmed diffuse small liver mets across liver. When the other expert radiologist my onc wanted to do biopsy looked on ultrasound, he could not see the spot he wanted to biopsy. He said that my left lobe looks a little shriveled and scarred but it is not disease as the others thought. It is damage from previous chemo more likely. There are some tiny spots on right side. Nothing he can see to biopsy. He is ordering a 2nd ct scan with a more detailed contrast dye. He said that the PET lit up more areas but he thought that it have exaggerated disease and it was more inflammation that disease. I still have liver disease but less is better than more!
This is a test we are hoping to get is Oncologica. Its get sent to the science Village in Cambridge, England. (I like that they have a whole village working on cancer!) They make a bold claim about the world's most comprehensive DNA based cancer test https://www.oncologica.com/oncofocus/#who-will-ben...
My onc says that it doesn't normally tell them anything new but sometimes throws in a treatment option they wouldn't normally consider. May flag up some thing for immunotherapy in future. He is talking about Xeloda or weekly taxol. He is leaning towards xeloda as it will be an easier treatment for me. He told me not to underestimate how powerful this drug can be. I know Wendy has had great success but I'm not sure if I should go blast it with taxol. I told him about Wendys 5cm tumour reducing to specks. He said he has patients who habe more cancer than me do very well on it. Also I have been off treatment (IF) since end of January waiting on biopsy and scans. So worried about no treatment at the moment!
Hope you do well in Japan Z. I feel I should be writing cancer notes and travel notes too. Sounds like a fascinating place!
Edited to fix all my typos!!
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Thanks for the update Lillymae. Your team seems very careful. I like the way they proceed.
>Z<
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Amethyst, sorry you have to join us. A counter point weighing in favor of taking Afinitor now is that there is a window for taking it. It does get a bad rap and although it works well for some, it doesn't work for all people. However, it will not be prescribed once liver enzymes and other metabolic panel items are high. Thus, if one waits to take it, one may lose the chance to use it. For me, I only took it for 3 months. It slowed my cancer significantly but did not stop it. I am glad that it bought me 3 months, as a few short-term treatments quickly add up to a year or more. I was leery of Afinitor but decided to take the plunge based on the window of opportunity issue. Also, I hope you can find someone to go with you to appointments. I go to nearly all mine alone, including most chemos. With my and my DH’s work schedules, it is hard to coordinate. And, when he is available, he usually has to stay home to take care of our toddler. I don’t mind going alone although there are certain appointments I want my DH to be there. He can’t go to all of those but we do our best to make it all work.
Lilly, I hope you can get some more answers on what the doctors saw in your scans.
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Amethyst-It took me two months to process progression. My MO, whom I trust, subscribes to using hormonal treatments as long as possible(for hormone positive BC of course).
I failed Ibrance/letrozole after 16 cycles and have been getting Falsodex only(and Denosamab every three mos.) since November. I will have a scan next Friday to see if it's working. Keeping fingers crossed.
May the force be with you. MJH
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QUESTION: CT w contrast vs PET / CT. Won't the PET / CT be the most beneficial in revealing cancer progression?
I am understanding, correctly I hope, that a lesion that has dead cancer cells will still be the same size or even larger than it was when active. It may reduce some time later. So the SUV would be needed to show if the treatment is needed or not for that particular met anyway.
My idea is with my history of PET / CT and the need to know the SUV then the next step would be a PET / CT for comparison and the CT w contrast is a waste of time AND A HUGE GAMBLE that the next treatment is going after lesions that are dead or dying.
Am I better off to find an MO that is willing to do the PET / CT or am I mistaken in my judgements here?
History focusing on liver.
April 2016 PET / CT w minute seeds in liver which were not reported on this PET/ CT
November 2016 PET / CT w liver lesions and SUV uptake. (started Ibrance/Femara)
February 2017 PET / CT shows the lesions are down to seed size though still SUV uptake
April 2017 PET / CT reveal liver lesions are almost gone. (Started Xeloda)
July 2017 Ultrasound of liver shows nothing concerning
October 2017 PET / CT reveal liver lesions are quite large and active
November 2017 Ultrasound shows liver lesions have grown another cm each way.
January 2018 CT w CONTRAST reveals liver lesions are the same size but smaller on one side, larger on other. (Started Aromasin)
The onc I just left behind said only a CT w contrast so w could compare to the last. I say compare to October w anohter PET / CT.
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Bluebird - If you are concerned you can ask for a PET/CT WITH Contrast. The CT WITH contrast piece will be comparable to your previous scan, the PET gives added information about activity. PET allows you to assess activity, CT with contrast allows you to evaluate size. PET CT with Contrast allows you to evaluate activity and size. Unless you ask for it, PET is done with a CT but without contrast. A CT without contrast orients the PET information in space but is not a useful diagnostic tool. The scan won't be comparable with your previous scan.
If I were to take a poll of the doctors I have consulted, they would recommend the PET CT without contrast almost without exception. They think activity the most important piece of information. You are correct that a CT without a PET does not tell you if the lesions are dead or dying and that is their thinking as well. Also, the dose of radiation you get with a PET CT without contrast is lower than a CT with Contrast. They would argue that you get better information for less radiation dose.
I took their advice and missed progression last April ... apparently my tumors were growing without showing increased activity on PET. This has put me in a weak position for the past year as far as treatment options. I am pretty upset about this turn of events. Because most of my issues are in my liver, I've come to insist on a regular MRI of my liver with nose to knee PET scans less frequently. MRI's provide extremely detailed characterization of liver met size as well as some information about activity.
The question of PET vs CT w/ contrast can get more involved you take into account individual factors. Many people feel that CT w/ contrast plus an excellent radiologist is the best way to monitor if ILC is a concern. If bone mets are a major concern, then there is a different set of advantages and disadvantages to the different scan. Certainly other factors and issues as well. I only focus on the issues that matter to me.
But going back to PET vs CT w/ contrast, the question is whether metabolic activity or growth as measured by an increase in size are better and sufficient to monitor cancer, or do you need both? Is it worth the radiation dose to get both? There really is no right answer. As a result you will see that we all have different scanning protocols based on the preferences of our doctors, the specifics of our cancer and, in some cases, our own decisions and advocacy.
If you decide that metabolic activity is more important and you want a PET scan, you are in good company. However, this time I would request a PET with a CT WITH contrast. That will allow them to compare this scan with past scans. Going forward you can do PET scans and they will be able to compare the next scan with the scan you have now.
>Z<
PS I can't tell from your profile what type of mets you have. It is useful to keep your profile detailed and accurate because it informs people's responses.
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Hi all, I was just re-reading about a treatment option being developed at Stanford, where they inject directly into the tumor a molecule that stimulates expression of a protein called OX40 on the surface of T cells in the tumor, together with a monoclonal to OX40 that stimulates those T cells. Because it is direct injection into the tumor, only low levels of these compounds are used, and hence there should be relatively few side effects.Testing in mice, this was an incredibly effective vaccine, and the supercharged T cells eliminated both tumors and distant metastases in mice. basically, the system relies on T cells already in the tumor to have the appropriate antigens to hunt and seek out similar cancer cells in the body. A small clinical trial is underway to test it in lymphoma, but in principle, if it works, it could be a vaccine that works on all kinds of solid tumors....
https://www.sciencealert.com/cancer-vaccine-stanfo...
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It has been two weeks since I posted here on what I consider my home thread. And I have only made a few short random posts elsewhere recently. Why is this, I ask myself. Well, for one thing, we have lost so many lovely BCO sisters lately. It kind of makes me run away and hide my face. Sad and discouraged. Also there are like four big problems I am trying to help various family members with, including some chronic health issues. Life is hard; frustration and tiredness are constant. I’m always behind in what I need to accomplish, and often if I sit down to BCO I end up spending a lot of time and not getting things done. Or I just feel too tired to think and end up watching TV. It’s worse my second week of a Xeloda cycle, like now. But I miss the community and feel bad not responding to posts. Sigh.
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Don't feel bad Shetland Pony for not responding. I read more than I contribute. I know most people names and yes lately there has been a lot of bad news. This is such an awful disease, it is hard not to take it personal. One Inspiring lady I follow over in UK has been told she has no options. I cried most of last weekend uncontrollably. I do delight in the positive stories and jot down notes of interesting info like the above info on different scans. Life is busy. Your family members need to at the moment. You are not superwoman! Everyone feels behind in what they have to accomplish. Even in full energy mode I rarely get there. Don' be so hard on yourself. It's nice to get lost in tv and let your brain switch off for a while (tv is in its golden age they say!) I do have park bc and normal family life resumes. I come here to read and when I do post someone always acknowledges me or advises. That's what is great about this community, I think everyone understands how you feel xx
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Hi Shetland - We all come and go as we need to. Thinking of you always. I am tired of losing people. It's been very hard on me as well. I am glad to hear from you and glad you are posting. I get everything ... the fact that life goes on and can be very hard completely independent of the cancer and yet we're still dealing with the fatigue and the next scan and all the cancer crap. I expect you will get some good energy back from supporting your family members. Sending you waves of strength so you can be the best friend/sister/daughter you can be despite the crap you've already got on your plate.
Cure-ious - The problem with that strategy for MBC is that generally we don't have T-cells in our tumors. With the exception of TNBC, MBC is not immunogenic, not seen by the immune system because of weak expression of MHC1 receptors, or that is the current standard thinking. I did ask the pathologist to look for T-cells in the tumor tissue from my last biopsy and ... nada. So at least in that sample there was no activity. I wish there was more interest in why MBC is not visible to the immune system. There is probably a way to get it to express MHC1 receptors and advertise to the immune system that it is non-self, but the focus seems to be to develop these immune stimulating treatments on lower hanging fruit like melanoma, which is prickling with MHC1 receptors advertising non self.
All that said, my doctor here commented that we really don't know, based on a biopsy of a single tumor, the characteristics of the tumor population given that cancer becomes so heterogenous in the advanced stages. I found that both heartening and terribly disturbing at the very same time. He's going for an adaptive (T-cell) immune response. I am not stopping him.
>Z<
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Shetland, what you share completely resonates with me too. But the beauty of this whole thing is that we truly understand. You come and go as you need. This group is always here. Prayers for strength and peace and wellness for you and all always.
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Shetland. I have missed you. I think I tend to post too much. Ha. But, if I read something that I have experienced or that I can encourage someone with, it's therapeutic for me I don't think my life is as busy as yours right now. When I'm busier I don't post as much. Most of the time, I am alone and not very busy. Those are the times when it fills a void for me. Posting here feels productive, when I think I've helped someone or they have helped me.
Did you know that Babs is having her y90 on March 2? Also, JFL has an appointment with IR on Monday to discuss hers. I sure hope theirs turns out well, too. It sure did help me, no uptake in my liver mets since y90 in May.
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Shetland- I too had taken a step back from BCO-sometimes hearing of our fellow sisters troubles is just too much. Plus, dealing with our own lives is all that we can handle.
We all do that which we can-no judgements ever!
xoxo
Babs
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Shetland - I agree with Z and Kaaborg - you come and go as you need. We all understand. I agree it is harder to login when we lose sisters/brothers especially in a short period of time. Stepping back from the boards is natural. Sending you love and support.
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I was wondering if there is another thread I should go to to find out answers to my liver mets questions, as far as the liver panel goes. I read that it is not profound if you have mets and your panel is normal. My AST improved after two abraxane treatments. Isn't that a good thing? Can your liver be swollen and still function? I know liver mets has a bad prognosis (from what I have read) but isn't is possible to keep them under control for a few years? Thank you.
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