How are people with liver mets doing?
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Candy, I have not had Y90 but I think that might be a difference of opinion between Dr's. If one says no because of other Mets I would ask around until you find one that will do it. Especially if the bone Mets are stable.
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Candy and others - mets do not need to be confined to the liver to have a Y90 performed. However, most IRs want the other areas stable. I have extensive yet stable bone mets. I do know women who have had Y90 when other areas were not stable but that is more the exception. I would like to warn everyone based on my own experience - I had to fight for nearly a year to get Y90 - don't rely on what your MO says about Y90; don't even rely on what an IR says if that person is not an expert in oncology-focused interventional radiation and has performed Y90 on breast cancer patients. My MO first said no (quite sternly). He learned more about it and over 6 months or so he came around and by the end was a big supporter. My IR who does my biopsies and also performs Y90 in liver and colon mets told me I would go into liver failure and was not a candidate given that I was heavily pretreated. That did not align with the research I had read. Then I went to a highly recommended IR who trains others on performing Y90, who specializes in oncology and has done a lot of breast cancer. He told me I was an "ideal candidate" (his words) based on the criteria he looks at - presence of multiple liver mets not eligible for resection or treatment for oligometastatic local liver therapy (such as SBRT, radioablation or other treatments for those with only a few tumors), able to perform at least 50% of normal daily functions, liver enzymes/function not way out of whack (liver function tests can be elevated (maybe up to 3 or 4 or 5 times or so above normal?) but probably not super, super high) and stable mets in other areas of the body. This technology is so new in breast cancer that most doctors are not in the know. Y90 is different in colon mets and liver mets because those cancers have more limited chemo options and the primary chemo(s) cause permanent liver damage, which is why the first IR thought my pretreated history would be a problem. He was wrong. Breast cancer is different and fortunately, we have many more chemo options which do not cause permanent decreased liver function. Get yourself to an expert to get an accurate opinion about whether you are a candidate for Y90.
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JFL, that is really good information for me to have. Thank you so much for posting it.
BeautifulSunse
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Candy-yes, I have bone mets as well as liver mets. JFL posted good information above. Best, MJH
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Yes you can have y90 with other mets, even other organ mets. I had mets to lung and chest, they were responding to IL. My liver mets were not so I had y90 in both lobes. Some MO don't really know. Go to an experienced IR to see if you are a candidate. I think he will say yes.
AA has already failed. The last straw is skyrocketing blood sugars. My doc said I'd have to be on insulin as long as I'm on AA. So tomorrow ill tell my MO I am intolerant of these SE. That added to all the weight loss, nausea and pain is too much.
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hi. thanks to everyone who wrote back last week. I had a PET/CT Friday, should know the results tomorrow, Tuesday at latest. Current plan is to go back on gem/carbo, since we currently don't have any reason to think the cancer had mutated around it. Rather, I just stopped taking it. I am hoping that the PET/CT provides some answers to all the "stuff" that the MRI picked up in the liver and why my LFTs continue to trend up (despite NED scans for 6 months and then being off chemo).
I can't remember if I mentioned, but the abdominal MRI also showed that I now have spine mets. This seems to be puzzling the doctors, since my liver mets were very fast growing TNBC and they say that type of cancer doesn't usually go to the spine. Perhaps the original ER+ cancer I had when I was stage 3 has set up shop there? But it doesn't seem to make sense that the gemcarbo wouldn't have taken care of that last year. 🤷🏻
Tricia - yes, I've had genomic testing. Caris when I was early stage and Foundation 1 on the liver mets. I've also done Guardant360 and Omniseq's Immune Report. When I started gemcarbo last year, I didn't have the results of all those in yet. And since gemcarbo was working so well, I stayed with it until I had 3 consecutive NED scans, then I stopped treatment. I am not BRCA+, but some doctors speculate that my cancer is "BRCA like" and that I may benefit from a PARP inhibitor. It's definitely something on my radar of things to consider. At this point, I'm hoping I can restart gemcarbo, get back to NED, and then go on some sort of maintenance drug (such as a PARP inhibitor or something else) rather than stopping treatment all together. We shall see. First things first, I need my PET results and my treatment plan.
Hope everyone has a great week! Thanks to all on here who are so knowledgable, supportive, and helpful to one another. ❤️
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Grann I'm glad you are stopping that treatment. It seems super miserable for you! I'm sure there is something else to try.
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Grannax, I'm glad you are ditching the AA and just know there is something both effective and better for your QOL in their pockets! Thinking of you today. Peace and better days.
Katty
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Grannax, sorry the AA has been so hard! Hope you get on something that is easier and very successful!!
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Thrivingmama, good luck with your upcoming PET scan.
Grannax, sorry to hear about AA. I only lasted 3 months. Good riddance. I think the efficacy is grossly overstated and the side effects grossly understated. It truly seems to work for very, very few people and side effects can be harsh. Have you or your mo thought about what is next for you?
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Thanks ladies for your support. I need it because she was not in agreement with going off. She wanted dose reduction. I was shocked and said no, I cannot imagine another day of this regardless of dose. Finally she said it was a reasonable choice to try Xeloda. So after a wash out period I will start X. My other choice was Abraxane. To which I said I'd rather try the pill first.
We are not n the same page, she and I. She was insulting and sarcastic to me. 😞 But I'm going to wait till after my NYC modeling gig to think about changing MO.
I'm excited to go, but I don't feel well enough right now. I'm sure when this horrible drug is out of my system I will feel so much better.
JFL she must believe this overrated stuff. What are the rates stats? I never read about anyone on here getting five years on it. But she mentioned that?!?! It made my BS go up so much I was going to have to start taking insulin. That was unacceptable to me.
I don't start it until February 18.
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Grannax, you are in my prayers. Xeloda has great potential for working against liver mets. It worked so well on my wife that she was able to eventually switch to Ibrance / Letrozole. Praying that you get the same great response.
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in clinical trials Afinitor was found to NOT improve survival rates. So we are expected to cope with all the side effects without any real benefits....no science here....dare I say, by their own standards, it looks like quackery to me....
Also... this drug is targeted for patients with the ESR1 mutation which Grannax and I both have, yet my cancer markers quadrupled while on Afinitor for those three months.
so I have to conclude that there’s no real science behind all this DNA mutations stuff...I believe that our beloved MO's have for the last 100 years been mistaking the effect of cancer for the cause....and that’s the reason why they can’t find a cure.
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Grann I think you will be much happier on Xeloda. I think the worst I felt was the first 7-9 days, but my body seemed to get used to it and I took it for a year with no problems except tiredness. That pisses me off about your MO. I think the dose should be started at a lot less. But no, they always have to drag us through the mud first. I have to say ever since I got a little pushy with my oncologist things have been much better. He even came down to the Infusion room to see me yesterday before chemo because I told the nurse I was feeling really poorly from it this past week. He ordered TSH and said it would be OK to skip this one if I wanted. I decided to get the treatment because I have next week off and my marker has gone down so much I don't want to mess it up. This might be my last one though. I think the harm might outweigh the good if I go any further with it. I hope you're feeling better quickly. Shitty drug!
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Miao, I also have the ESR1 mutation and only made it 3 months on Afinitor as well (I will always remember LALady calling it Aphonytor!) The Afinitor did slow down the tumor growth so there was some mild activity but it never stopped the growth.
Grannax, I suspect that anyone who lasts 5 years on Afinitor probably would have lasted that long or nearly that long on hormone therapy alone, likely someone who took it 1st or 2nd line at most, and most likely had bone mets only. I have high hopes for Xeloda for you. Sounds like your MO views all chemos in a different league of harshness than hormone/targeted therapy. I must say you will undoubtedly feel much better on Xeloda. You may even find it easier than Ibrance/hormone therapy as I did. I agree Xeloda is a natural next choice. I have taken both Abraxane and Xeloda and Xeloda is more tolerable and more convenient, plus no hair loss. Abraxane wasn't bad but is something you can save for a later time.
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Dear Miaomix, your phrase "I believe that our beloved MO's have for the last 100 years been mistaking the effect of cancer for the cause" resonated much in me - so true... Dealing now for 1.5 years with MO's (oh yes, my wife Sandra and me are still newbies) and reading thousands of posts here on forums, I can for sure say that if we put you, ladies, instead of some of them (MO's), survival rates would probably double. Many good decisions come not only from professionalism but also from listening, understanding and healthy sympathy. Sometimes at MO's meetings one can feel like talking with a plumber: that pipe, we throw it out and get a new one... I respect them, I know we cannot without them, but quite often their decisions are more than questionable...
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Xeloda was my wonder treatment for over 5 years. I was NED for much of that time and I wasn’t on anything but Xeloda for a majority of my time on it.
May it do you wonders Grannex.
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Katty- WHOO-HOOOO!!!!! What a fantastic response!!!
And you already knew it was working, too!!
But now I really want to resolve this mystery of what trial it is you are on!!
Earlier, you said you are in this trial, which combines Opodivo with anti-CTLA-4, which are two immunotherapies often given together
https://clinicaltrials.gov/ct2/show/study/NCT03369...
You also indicated that your doctors thought you would respond to this trial. It would be unusual for them to think that you would respond to immunotherapy because you are ER-positive, however it's possible that the genetic sequencing of your cancer showed high expression of PDL1 in the tumor, or mismatch repair mutations- basically, there are a few known mutations that can make cancers respond to immunotherapy- but they are rare. The above-listed trial is offered at MD Anderson, so it seems right.
However, you asked your MO for more information and he sent you a statement that the trial is based on the idea that EP4 inhibitors can makes immunotherapy work in cancers that normally do not respond (which is the case for the vast majority of ER-positive patients).
Moreover, I noticed that there is a trial of Opodivo with an EP4 inhibitor, and it is also offered at MD Anderson
Is it possible that this is the trial you are on?
https://clinicaltrials.gov/ct2/show/study/NCT03661...
Given your amazing response, its critical for us to know what trial and what drug combo you are on? thanks!!.
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My two cents on Xeloda: I was on it for 6 months because I'm triple negative (used in Stg. 3 as a preventative), could take it while recovering from my bmx, and while a back problem delayed starting radiation. Most likely, my liver mets developed while I was on X. As soon as I finished X, rads started. About a month after starting rads, mets were found.
YMMV, etc.
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Cure-ious, I think I did copy the wrong link. There isn't an NCT# on my informed consent. This must be the one, thank you! https://clinicaltrials.gov/ct2/show/study/NCT03661...
I am in a Phase 1/2 study of BMS-986310 administered alone and in combination with Nivolumab in participants with advanced solid tumors.
I take 2mgs of BMS-986310 per day and a 30 minute infusion of Nivolumab (Opdivo) on the first day of each 28 day cycle.
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Dear BSandra,
Thank you for confirming that the Emperor is naked....at least we can keep our sanity in the midst of the horror and absurdity that's the current state of cancer research and treatments.
So much dismal failure over the years is causing dissociation from reality in the medical community. So they have developed wonderful coping mechanisms by studying and discussing the patterns, contents, and the drippings of various spilled milks.
They enjoy analyzing the chemistry and DNA of this milk vs that milk, they work very hard on containing the spills, while forgetting to concentrate on understanding and explaining why the milk spills in the first place.
I was very pleased to read that your wife is NED but not surprised since she is on Herceptin, a TXthat can be a lifesaver for the majority of patients that post on these boards. I'm hoping to qualify for that medication myself eventually.
I wish your wife a perennial NED status.
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Three months ago, my one liver met was no longer detectable on CT. I had labs done yesterday, and the albumin, bilirubin, total and direct proteins and alkaline phosphotase all were in normal range. But my ALT and AST shot up from the 20s to the 50s. UGH. I have heard that acetaminophen can cause those numbers to rise, and I have been fighting a cold and on Nyquil for the last 10 nights. Hoping my liver met has remained quiet and those numbers are just a fluke.
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That could well be the case, BCiM. Lab re-test scheduled?
Grannax, I agree with those who predict you will feel much better on Xeloda. I think the oncs are wrong to think that all hormonal-plus-targeted therapies are less harsh than all chemos. (I hate anti-estrogens!) Remember our dear LALady used to call Afinitor “A-Phoney-Tor”?!
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BreastCancerinMinneapolis, it is definitely a possibility that your liver enzymes shot up from being sick or from the acetaminophen or another ingredient in the meds you have been taking. Mine shoot up at least once or twice a year when I am sick and go down just as quickly.
I have a PET-CT tomorrow morning. I have been on Halaven for six weeks or so. I believe it is working but one never knows. I am transferring over to a clinical trial of erdafinitinib but will plan to resume Halaven in the future (so long as tomorrow's scan looks good).
Shetland, I always think of LA Lady and her calling Afinitor "Aphonytor". I think about her often and miss her around here. Still sad she didn't have a chance to start her new SVP job she had lined up to start in August. That job was a very big deal. We tracked together on a few medicines at the same time, one after the next, and I never expected she would be taken from us last year.
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Yes, I was worried about her, but didn’t see that coming so suddenly last August. It was strange; Kaption posted that her immediate cause of death was aspiration. Claire was generous, smart, helpful, encouraging, strong, a lover of the arts, and very accomplished in her work though she never bragged. She had a blast going on cruises. She found great joy in her little nephew and her little cat. We had communicated off the boards, and her death hit me hard. One of the last messages I had from her said Keep on dancing, and in my heart I dedicated my next performance to her memory. I was too sad to post last summer, so I am glad to say this now and remember her.
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JFL, I will be watching for your post about scan results.
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LAlady..miss her, too.
Shetlandpony! I am so happy that you still dance!! Especially on Xeloda. Your feet must be in agony and just impressed that you continue to do what you love.
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Ladies your words of encouragement are exactly what I needed this morning. In tears today, feeling anxious about the thought of changing MO and/ or staying with MO. Each is just as upsetting. I know the AA is still in my system so my ability to be rational is warped. Worst of all my daughter and SIL were with me at the appointment and do not think I should change. They did not the eye rolls or pick up on any facial expressions that I saw. Or her sarcasm and insulting words were lost on them. I'm an empath, a people pleaser. My daughter, especially is the opposite. So...I'm in tears.
I have full faith in X thanks to two years here. Otherwise I would not know. Yes, I think Abraxane is probably next. I did it 9 years ago, no problem except hair loss. I did it with benadryl not steroids. She says no it will have to be steroids. The arguments never end. Is Doxil ever used for third line? But, it probably does have to have steroids. I react so bad to steroids, my whole body turns red, seriously.
Oh well, hopefully I will get a good two years on X. I think my next scan will be in April. I am absolutely positive AA did no good. Basically I have not been on an appropriate TX in five months. Wonder what my liver mets are doing?
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Grannax2..no harm in seeking second opinion from a potential new MO. Take your DD and SIL with you to show sometimes change is good.
You should be in a good place emotionally when you start X. And if you don't have a trusting relationship now with your MO, it will continue to bother you.
Keep talking to us..we have your hand.
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Grannax, you are the one with the cancer; you are right to go with your gut. It has served you well so far!
Remember I told you how I was supposed to start AA last summer and I was dreading it unlike anything before - I had such a bad feeling based on what I'd read. Then, as it turned out, I couldn't get enough financial aid to swing it and all I felt was a huge sense of relief, like I had dodged a bullet. At some point later on, I was talking about that with one of the PAs on the team, and she made a face and [paraphrasing] reassured me that I hadn't missed out on some great treatment and not to sweat it.
We're here and behind your decisions all the way.
Katty
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