How are people with liver mets doing?
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Hello all! Here's my promised update about SIRT/Y90, TheraSphere, radioembolization, whatever you want to call it. I met with a wonderful RO on Thursday. I really feel like I've won the lottery as far a medical professionals go.
Here's the best first. On average 40-60% of patients respond and response lasts for an average of 6-12 mos. with no other treatment during that time. He does currently have a bc patient 2 years out and still not having to start chemo again. Sounds great! Maybe I can be her. Or better yet maybe I could be one of the colon or liver cancer patients 6-7 years out still not having to return to chemo. I had no idea such great results were out there. I'm not banking on them of course but who doesn't like a little dose of hope now and then.
As for me, I for sure want this in my bag of tricks but the question is when. For me, this seems like a lovely next step for when my platelets tank. And the RO confirmed this before I even asked. I seem to have found a sweet spot for them with the carbo but they have been borderline most of this year so it does stand to reason they'll eventually get fed up. Or, perhaps the big P will come my way. So long as it doesn't rear its ugly head elsewhere in ways more threatening than my liver, after progression would be a good time, too. Ultimately, we're not gonna mess with this good thing I have going now. So I slide SIRT in position after carbo and before an immuno trial in the future plans list.
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Lisa -
I am glad you are back on hormonals. There is some evidence that a bit of time on chemo will resensitize you to hormonal treatment.
Neupogen and friends are not usually used to support a recover of WBC with Ibrance, so you won't find a lot of experience with that class of drugs on this thread. I've asked people to explain why and the rational didn't really convince. No reason not to give it a whirl. However, the new CDK 4/6 inhibitor, ribociclib was just approved. It's pretty much the same as Ibrance EXCEPT it doesn't slam the old neutrophils as hard. So ask about that. I call it Kombucha, but that is NOT the brand name. It's something weird that starts with K and sounds like some kind of sasquatch.
Finally, I am always suspicious of people who faslodex and go back to letrozol. Faslodex destroys the estrogen receptors so I don't understand why you would use homone suppression (letrozol) after a SERD.
It seems to me you should do Faslodex and a CDK 4/6 inhibitor (Ibrance or ribociclib) or a triplet therapy like exemestane and everolimus (afinitor) and one of the CDK 4/6inhibitors. There is a very interesting trial that several people here are on that seems like a better hormonal approach, given that you have done femara and faslodex. Exemestane is the standard 3rd line hormonal treatment often combined with everolimus/afinitor and now in trials as a triplet therapy with ribociclib.
Loading you up with questions for your team ... good luck with your transition.
>Z<
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Kaayborg - i love your plan. Keep slamming back cups of green tea and carbo will hold the mets for a long while. If that fails you have two great options, either of which can put you in remission. And the longer you can wait, the more likely that will be.
Thanks for the update.
>Z<
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Zarovka, I had understood that although Faslodex "permanently" destroys currently existing receptors, new receptors still regenerate. I was initially freaked out when I heard it permanently destroys estrogen receptors before I took it but, upon more digging, learned it is not exactly as it sounds.
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JFL -
thank you. that does make a lot of sense. and i do see people on letrozol after faslodex. but the NCI/ASCO guidelines recommend letrozol before faslodex in the sequence so there must be some reason. if a doctor suggested letrozol after faslodex, it is a question i would ask.
in lisa's case, exemestane would be a logical choice, per NCI/ASCO guidelines since she has been on both letrozol and faslodex. the doctor probably thinks you can't pair a CDK 4/6 inhibitor with exemestane, but he may not be aware of the trial.
just possible questions for the medical team ... i like to keep mine on their toes ;-) as you can imagine.
>Z<
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Z and JFL- thank you so much for the input! I have also heard that some time on chemo can re-sensitize to hormonals; I heard after a year so was so pleased to try it sooner.
I'll ask about the ribociclib and why the letrozole rather than faslodex. I progressed on both so is it a timing thing? I was most recently on the faslodex. As far as the triplet trial with the A/A combo goes, I didn't put it in my signature but I briefly tried A/A before the liver mets appeared. We stopped it rather quickly because I broke out in a nasty rash and since I'm still working (not for much longer) I didn't want to scare the kids. Or parents. (I'm an elementary principal). However, I'm certainly willing to give it another try especially since I will be on summer break soon and may not go back to work. The retirement thing is complicated due to health insurance.
Thanks again for such great information!
Z. on another note I may join your fitbit community because I'm putting on pounds. Did I read in another thread that you do a 12 pose yoga sequence every morning? I do from 10-20 minutes most mornings and I'm curious about your sequence.
Best to all
Lisa
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Lisa -
I am very very skeptical of Afinitor because from what I have read, your experience is common. My biggest concern is what it does to the lungs long term. I have seen at least one person on here who had lung collapse after being on affinitor for a while and I believe that is a known "side effect". Maintaining overall wellness is a cornerstone of my strategy.
I do not think MO's think forward enough ... they don't know how to manage the kind of long term survival that we are now seeing with MBC. For that reason, I am very vigilant about how these treatments might effect me 10-15 years down the road since I personally expect to die of something else than cancer.
However, Shetland, who I respect tremendously, chose A/A after careful consideration and is doing well. I am watching her experience closely. In addition, the experimental triplet therapy i mentioned (exemestane/everolimus/ribociclib) uses a low dose of afinitor. I believe it is about half the normal dose. Check with the ladies on the thread i linked to in my post, but I think they are not having severe side effects at all. It can take quite some time after FDA approval to figure out, through clinical practice, how best to use these drugs.
Send me a PM with your personal email to join the fitbit community. The Stage V Fitness Thread is as useful to me to keep my workout routine going. The mental problem is to keep going through the ups and downs and the fact that I am not on track to beat a personal best at the moment. I find it very helpful to be in daily contact with a group of people in the same boat. Exercise is medicine at this point, but no longer an ego boost. Humbling to say the least.
I'll put the yoga poses in the head of the Stage V fitness thread today. I've been meaning to for a while. The difference between doing a daily yoga practice a not is night and day as far as energy level and joint pain. I wasn't able to do it until DDHoff shared this short routine.
Look forward to having you with us.
>Z<
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Well, a first time post for me. I was originally diagnosed with breast cancer in January 2015 and re-diagnosed this past November….almost two years out. A tumor marker showed elevation and I was rescanned and breast cancer was found in my liver. A biopsy showed that I was now almost triple negative as I I was now ERneu and Her2neu and PR very weak. My oncologists is treating me as triple negative and seems to think this is the right thing to do for now.
I was started on Gemzar and Carboplatin and when GPS testing came back it showed I was unlikely to respond to Carboplatin and likely to respond to gemzar. So….after completing one round of both ( two weeks on and one week off ) I went off Carboplatin and on to gemzar only and this has been working ( fingers crossed ) well for me.
After three rounds I was rescanned and my tumors were showing some shrinkage!
I had recently seen Kaayborg's news of Radioembolization and had asked my oncologists about it. I did also speak to a liver specialist and will still meet with a RO sometime in the next two weeks. The surgeon I spoke with discussed chemoembolization not radioembolization. I am looking forward to finding out more about the difference between these two procedures and will inquire in my next meeting as well as continue to do research. Any thoughts or experience on this? Wondering if you were told about both procedures Kaayborg? or is it based on each individuals given situation and what is most likely to benefit them. A first round of research showed that neither procedure is more effective then another….but I have not dug that deeply yet.
I am just realizing what a great source of support this site can be, research can be sooooo exhausting! I would love to join the fit-bit exercise group Zarovka. Looking for ways to stay as healthy and positive as I can! Thank you everyone and may the beginning of spring bring good things to all !0 -
welcome amelia - send me a private email with the email account associated with your fitbit account and I will add you
.>Z<
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Lisa, tacking on to what Zarovka said, I took Ibrance with exemestane (and Faslodex at same time). My MO has believed that any AI would work with Ibrance since Ibrance was approved. He delayed prescribing me Ibrance until it was approved with Faslodex but never seemed to be concerned about it working with exemestane. I am currently on Xeloda but my MO has Afinitor with letrozole planned next. He truly believes the AIs are interchangeable. (Still not sure if I have Afinitor planned next though . . . jury is still out.)
I am curious, has anyone cycled back onto Tamoxifen who took it for early stage? I would like to try that at some point.
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Well I had my CT simulation in preparation for SBRT. Wasn't too bad other than the breathing nightmare. When they say, "Ok we are just going to watch your breathing. Some peoples diaphragms move too much. Just breath normally. We might have to put this clamp on you. " WHAT I couldn't even breathe right at all anymore! The radiologist came finally and I asked if I'm suppose to abdominal breathe or chest breathe, I was a mess. He said shallow upper chest. I survived but I'm abviously easily suggestible. I really can not wait to zap the liver mets. Just have to wait now for the physicist to do their planning.
I wish we had done this months ago!
Hugs to everyone...just breathe 😉
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Bstein - I am glad you got through that. I have to say their coaching strategy could be improved. If I have this done I will study breathing techniques for these procedures in advance. It's pretty well studied, I don't know why they put you on the spot like that. I would certainly panic in that situation ... which will not result in the optimal breathing technique.
Thank you for taking the time to bring us along on your procedure. Many people watching your experience. It seems like a great idea to zap liver mets, but then there is the actual procedure to get through. We all want to know what it is like,
>Z<
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I'm Jill - newly diagnosed Stage IV de Novo in January 2017. Following this as I have numerous lymph nodes involved as well as 2 small mets to my liver. Interested in gaining more knowledge from this thread. Thank you to all of you regular contributors! Following!
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I learned yesterday I've got progression and will be switching to Gemzar or Kadycla tomorrow. This will be my 8th line of treatment for stage 4. Started stage 4 6/2014 with extensive mets, innumerable in liver, including a 13 cm x 11 cm tumor. Today, 3/2017, i spent the day swimming and snow tubing with 12 year old son, but I can only do that if I am on downhill or flat walks now. It's the rope tow that made it possible!. For the woman who asked anout Halavan: Halaven was my 6th line treatment for what has been an aggressive and persistent stage 4 cancer over the last two-and-a-half years. So we really didn't expect it to work. But it did! And the side effects were very tolerable. Even for this body, which is been through a lot, I mean a LOT of chemo and targeted therapies in the last 2 years. I wish you luck with Halaven
Warmly, Suzy...who just got back from snow tubing and swimming with her 12 year old!
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kaayborg, that does sound incredibly promising! Damn straight we need doses of hope frequently! Little by little, inch by inch, they make progress with life extending treatments and we are so lucky we can be beneficiaries of each and every one. Thanks for the info1
Welcome Amelia, I like to hear the embolization ideas gaining steam for us. bstein, sorry your experience was so uncomfortable......Best of luck on the procedure. Welcome Jill too, it's a good crowd to hang with. Wow Suzy yo have been through a lot. Hang in there girl and keep up the activity, that's awesome!
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Welcome Jill!
>Z< I can't join the fit bit group because I track my exercise with my Apple Watch 😔, no fit bit! I would sure like the yoga moves though, is it possible?
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Lisa can you imagine the children's reaction? You'd make their day!
Bstein Just breathe, at least you know it's a good treatment. A little more sensitivity they would have saved some of their precious time.
Suzy, wow what an adventure. You did go through a lot. I do have a question re: the lungs, did they ever zap it at all?
Amelia, so many new faces here, cheering for you.
I feel like maybe I should be doing more, and getting Dani to a liver specialist? I, we really did not have to go yet another doc. But would a liver specialist, look at things different.
She is starting the IMMU132 this Thursday.Just thinking if I should be doing more? The one met (it was one met 2 wks ago, who knows what's now), but the one met in the lungs, should I ask it to be radiated? The thing is you know Onco is prob not gonna let anything be done now with this new trial thing. Just anxious for a change.
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I'm still not sure if I'm officially "here" or not, but mom, I know Hopkins has a dedicated liver tumor program
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Welcome Live Big. Fight like a mother indeed. Two small liver mets don't stand a chance.
>Z<
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Hi ladies,
I haven't posted in a while but I'm back because Pauline has had progression in her liver after 4 months on gem/carbo. It's so frustrating because the other mets in the bone and nodes are looking better. These liver mets are some very stubborn beasts. Her onc is suggesting either vinorelbine or eribulin, with eribulin as her first choice. We are supposed to decide tomorrow, when Pauline will receive the new treatment. We understand that the main difference is hair loss, but what else is there to consider? For someone with widespread, aggressive disease in the liver, are there any other options? I feel like I want to trust her doctor (MSK), but I'm wondering if we should seek some other opinions elsewhere? It's just so much to keep up with her treatment schedule as is, plus taking care of our young daughter and full-time work. I appreciate any input you might have about this decision.
Gina
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slepeint I was glad to see your post about Halavan. I haven't posted on here for ever but bob in from time to time to keep up with things. I've been going along with Xeloda for the last year or so, feeling great, working, travelling, my hair the best it's ever been! And generally forgetting about C when BAM! About two weeks ago the ascites kicked in big time, nine months pregnant stomach and mass discomfort and pain. I had ten litres drained initially which didn't give much relief and then about another four litres but I'm still looking as with child as ever. I started on Halaven (eribulin) on Monday and really hope to get some relief soon. I had my babies 20 years ago and don't want any more!
Best to all
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after some consideration my oncologist emailed me that she wants me to get an echo and blood work before I see her again. The echo is to see if my heart has recovered from the herceptin I've been off of for over s year. Guess she is a bit more concerned about my tumor marker gradually increasing despite good scans.
Mathis all comes at s time when I have a dream vacation to the galopagas islands in July and I recently became employed again. Not the best time to have to start a new treatment.
Really hoping my heart is better and more importantly that my market declines so I don't have to change anything.
It never ends, the endless wait for the other shoe to drop. Most days I do ok without thinking about it. But this time I'm worried.
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LeftFoot - I think your doctor is just being careful. Focus on the wonderful things going on. A trip! Using your skills! These are extremely healing things to have in your life. Don't let worry get in the way. It certainly won't make things better.
>Z<
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Isy, I am sorry to hear about the sudden acites. Is this the first time you have had this? Hoping Halaven brings you improvement and relief from he discomfort and distended belly.
Left, I hope your scans go well. Worrying is just no fun with BC. Enjoy the Galapagos!!!! What an amazing opportunity. Don't let this terrible disease get in the way of such a fabulous trip! I have always wanted to visit there.
Wishing positive thoughts to both of you.0 -
Hi JFL
Yes this is the first time I've met the ascites monster. Scary when it happened so quick. I'm still swollen but managed to sleep really well last night, hopefully the Halavan is kicking in
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Hi All,
Anyone taking Xeloda for liver mets saw Alkaline Phosphatate elevated ?
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letmywife, mine has gone up out of normal range several times (along with ALT and AST) when I was sick (with a flu, cold or stomach bug) but returned when the illness passed.
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Thanks JFL. Actually my wife's ALP is going up (from 106 to 206) over a period of last 6 weeks since she started Xeloda. No other numbers are bad and no other illness. I am worried now.
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I hope I'm not butting in if I'm not officially diagnosed yet, but I could use some feedback.
I have had three CT scans since November that show small, indeterminate, hypodense lesions. They are scattered throughout the liver although the reports have never given a number. The largest has hovered around 1cm. The last scan showed some shrinking, some growing, but 1-3mm sort of change which could be radiologist interpretation.
Since the repeat CTs haven't given us an answer about whether these are mets or not, we are finally doing a liver MRI. My first question is will an MRI be much clearer? Will it finally give us an answer?
The other thing I'm wondering is if they are mets, what are the treatment options? I'm on Tykerb and Herceptin, both of which I started right AFTER the scan that initially found these lesions (prior to that, I had about a four month break from systemic treatment). It's an easy treatment and the lesions aren't growing so if it's mets, the treatment is keeping them stableish. We'd need to check the brain as well to make sure that's still stable, but I'm not thrilled about plowing through treatments if the liver stuff isn't growing or giving me symptoms. Due to the diffusive nature, some local options aren't available to me but I'm wondering about chemoembolization or Y90 since those go through arteries, right?
And finally, should I go through with the MRI? I'd like answers and to keep on top of it,but if this stuff isn't growing, I don't want to feel forced to change treatment. I'm just worried I'll get more questions than answers.
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bad at user names- when I was going to have either a liver resection or RFA on my solitary liver tumor, an MRI was ordered. The liver specialist preferred the MRI to the results from the CT scan. So I don't think it is unreasonable for you to get the MRI done. I am not sure, but I think it gave him better information about the mass in my liver than the CT did.
Warning, part of the MRI required me to control my breathing, which of course is hard to do when one is told. So if you get the MR, there might be a point where they tell you to hold your breath or change the pattern of breathing so that they get the images they want.
I was on Tykerb but it was in combination with Xeloda for over a year. Herceptin and I don't have a great track record when it comes to my heart function. I am still on Xeloda. It is an oral chemotherapy agent. It comes with SE, but i found it easier than the taxanes of the world. It is one of those meds that you can adjust dosage to help with SE if need be. Some people however do not do well with Xeloda, but I think this can be said of almost all chemotherpay agents.
Good luck. You can PM me if you like. MY liver was once full of tumors. Xeloda got rid of them. When one came back, I opted to have it resected. More on that if you want. Xeloda has kept everything at bay for the past 2 years.
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