How are people with liver mets doing?
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Thanks for the info Shetland. Yes, in fact she has recommended that I do so in the next few weeks. I was just wondering why she did not try to isolate whether it was the Femara or Ibrance that was causing the liver enzyme problem. Besides that issue, the combo gave me good scans. So at least I believe I could of tried returning to this combo with Ibrance at a lower dose to see what happened. Instead she immediately switched me to Faslodex alone which has now failed on it's own. If my scans had been stable we would of added ibrance at 100 mg with the Faslodex. But not to be. Trying to keep up on all of this is beyond exhausting. I am starting to doubt whether I should return to work in the fall and am filling out SSDI just in case. Time to get aggressive with my care.
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Right, you didn't switch off letrozole because of progression. Time to gather all your records and imaging. I like to hand-carry my own copies just in case the second opinion doc didn't receive them as requested. But first get that appointment made. So many changes being contemplated in your life--treatment, job, house. Take care of yourself.
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(((Artist)))
Surrounding you with loving, healing light!
Shine on my friend, Stephanie
PS - Aromasin is a steroidal aromatase inhibitor. Doesn't have an effect like steroids, just works in a different manner than the others. Afinitor, an mTOR inhibitor works in concert with it. The combo is a fairly intense approach that isn't used as early in treatment as Ibrance is now...still less toxic than the oral chemo Xeloda (the usual next, next step) or infused chemo. I bumped the topic/thread for you. In spite of date on it, it's not outdated. https://community.breastcancer.org/forum/8/topics/...
PS2 - Hope Rugo at UCSF has pulled it out for several of my friends with MBC.
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:-( Artistaheart, Heloinone, I'm sorry for the latest results. Please keep our chins up & moving forward. I feel like one of the little siblings looking up to the older ones (in terms of diagnosis time not age!) and learning from you all!
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Thanks you so much my virtual friends. I value all of your input so much and feel I trust your experience more than my own Onc. I would not make it without you all...... Yes Shetland I am indeed feeling overwhelmed but keep plugging away at stuff. I am one determined chickie! Thanks for the link Stephanie, I am going to jump there now. I have been perusing the anastrozole thread and don't see any Stage IV people using this so far???? Anyone out there?
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How do you go about arranging a second opinion? We called M.D. Anderson and they wanted $21,000 just to get started.
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ouch, That's insane. I always wondered, will your insurance pay for 2nd opinions when they are out of our network? I live in a rural state, no big Cancer centers here
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My Onc arranged the first one at their affiliated center 90 minutes away and insurance paid. I hope they do again....
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Artist, so sorry to hear this. I'm of no practical help to you as a trip neg gal with zippo knowledge about hormonal/targeted therapies but I am thinking of you and wishing you the best treatment plan as you seek your second opinion.
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Artist- so sorry. I know how you feel. I went through a few treatments and then Xeloda worked for me-finally! My treatment before Xeloda lasted only 2 months!!!! I'm sure you'll find a treatment that works. Do you go to an MO at a major cancer center? If not, maybe it's time for a second opinion. I switched MO's when I had my progression and my original MO didn't really offer me many options. Take today to be upset and then re-group and find out what other options you have!
Babs
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Hi babs6287. I went through meds like knife through butter last year. Then my onc put me o weekly taxol and the respose has been really good. Lungs show ned, liver tumers shrunk 50pc and bones stable. However, the lsdt two marker results have shown an in rease but scans are good. I have developed a painless, pea sized lump on my abdomen near belly button. I can,t remember whether it was on this thread that someone had what she thought was a spot and it turned out to be a skin met. I,m thinking if it is a skin met could it be the reason for increase in TMs.? I find it difficult to go over the thread again as I have mets in eyes. Has anyone got any onfo on skin mets from BC.
It seems we get a treatment that works and suddenly the rug is pulled from under us and we start again.
I wish all starting new tx the best of luck. Good results for the others andpain free days for everyone.
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Ugh Artist, so sorry to hear your news, it is so frustrating when this stuff happens. I just had my scans and meet with the onc to go over them. We were dx right around the same time, I was 07/08/15 so we have been following the same-ish path. Here's to hoping Ibrance is better to you the 2nd time around!! Hugs to all you ladies!!
Alissa
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Thanks so much kaayborg. I'm felling better today after jumping on here and getting all sorts of valuable feedback and encouragement. Yes babs, I am regrouping and got an appt. for a second opinion already on Thursday at UC Davis. That is how I felt at my appointment after the scan, that she didn't offer very many options and just seemed "resigned" or something??? I think having two Onc's going will help me bounce back and forth as needed. I liked the 2nd opinion Onc the first time I met her. True mutherflush, it seems as if the rug gets pulled out just as I get going on a roll. Alissa, Wow is that 4 kids? How do you do it and manage this cruddy disease too? I have 3 but they are grown and out. We are parallel in our timing! Are you just on Ibrance or something else too? How's it going for you? Be well all!
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Artista-so happy you got that appointment for a second opinion so quickly Let us know how it goes and what they say
Babs
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Kthleen I was reading what you wrote in the beginning of June, could I ask you how did you decide about doing the cyberknife to the liver? I didn't go far back to read posts, so is this something new with this one spot? How large is it? Did you do a biopsy?
Holeinone you are not a downer, you are living the real life. So sorry for this mess.
Artist I am cheering for you to get the info you need at the new appointment.
Timothy maybe there is a department at the Univ. that could help you get around paying this nonsense amount for a 2nd opinion. It's just not right.
We sent out all documentation to different doctors for a 2nd opinion and now waiting back. Onco called today, still unsure about doing biopsy or not, his plan would be to put Dani on Lynparza(an ovarian cancer drug) with immunotherapy and keep Ibrance and Letrozole and Herceptin. The Letrozole he wanted to change, but when I asked why he did not really know and it seems he will keep it for now. He does not look overly concerned about TWO spots in the liver, but I am, she did not have this 8 wks ago, and after a few years with bone mets she had mets to a major organ. I don't get his "not so worry" tune.
Also, Dani had a blood biopsy done with Guardant360 back in January and NOW he says he looked it over and sees that "the tumor" has a BRCA2 mutation. Hmmm what does that mean? I know she is BRACA1/2 negative, he said it has nothing to do with that, it's the tumor that has the mutation not her. Ever heard of such a thing?? Gonna ask around, it sounds really odd.
And b/c of that he feels the Lynparza would work.
Waiting for 2nd and 3rd opinions docs to get back to us regarding appointment, let's just say she is not doing any of these stuff before we hear from other facilities.
If anybody has input on Dani's status I'd love to hear it.
Stephanie, so incredible how you think of everyone.
Mutherflush hope you get your answer soon. Definitely worth looking into it, maybe even doing a biopsy.
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Momallthetime, I can speak to the tumor mutation vs. a mutation Dani has. This confused me too and I asked my onc about it when I got the results of my liver biopsy. A mutation that Dani has would be a genetic one, part of her DNA that could exist with or without having cancer but is predictive of her cancer risk and does guide treatment of cancer. Tumors can also have their own mutations not linked to genetics. I'm not brca positive, tumor or otherwise but I asked the question because my tumor study turned up a mutation whose name I happened to remember being negative for on my genetics test. So long story short, it is a thing and both help inform treatment options. Another important thing to remember is that tumor mutations can change so it's good to have them retested especially when a previously effective treatment has stopped working. Also, know that having the brca tumor mutation does not put your family at risk for having a mutation as a genetic mutation would.
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So I had a allergic reaction to carboplatin. I've filed away somewhere in the fog that this occurred to someone else on the boards in the last year. She brought a study to show her onc about extending the infusion time to prevent. My pharmacist and doctor are up on this and thus is the plan along with altered premeds. What I'm wondering is how long and well this worked for you? Did you have another reaction? It seems like every bump is indication that I'm just about done with this treatment and of course, I'd rather not be.
On the upside, my platelets did recover and I had treatment. We dropped gemzar this time to hopefully make them happier. Plus, carbo is what they predict is clobbering the tumors best so hopefully no loss. Then surprise, now you get to be allergic to carbo!
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Momallthetime,
I've a passion for researching, talking and writing about this is something very topic. I'm not a medical professional, but am a professional patient. I was born with a genetic mutation (first in family) that produces gastrointestinal polyps from a young age and 93% increased risk of cancer in multiple organs at all ages (Peutz-Jeghers syndrome).
It's not a BRCA mutation, but presents it's own challenges.
What the BRCA folks and I share is an autosomal dominant germline mutation that predisposes us to cancer.
Autosomal mutations are in contrast to gender-linked syndromes.
Dominant mutations have a 50-50 chance of being passed on to each child. This is in contrast to to recessive mutations that don't manifest in offspring, unless both parents have the same mutation.
And germline mutations mean every single cell in the body is affected because the mutation occurred at or shortly after egg-sperm fertilization. This contrasts with somatic mutations - a mutation that occurs in the body some time after the person develops Somatic mutations are frequently caused by environmental factors, such as exposure to ultraviolet radiation or to certain chemicals. Cancer can also cause somatic mutations.
What Dani has is a somatic mutation of a BRCA gene in some part(s) of her tumor. This doesn't mean that she has a germline BRCA germline mutation from her father or you and it can't be passed on to her children because it's not in her germline (eggs).
What it does mean is the cancer developed more and more mutations as it evolved. That's what cancer does - tries to outlive its host while stripping us of nutrients, etc. These are our cells gone bad or rogue. They are naturally occurring mistakes in cell growth, survival (autophagy), growth and migration (angiogenesis), metastasis and more.
If you want to get geeky, here's an abstract of a medical journal article on the Hallmarks of Cancer:
"The hallmarks of cancer comprise six biological capabilities acquired during the multistep development of human tumors. The hallmarks constitute an organizing principle for rationalizing the complexities of neoplastic disease. They include sustaining proliferative signaling, evading growth suppressors, resisting cell death, enabling replicative immortality, inducing angiogenesis, and activating invasion and metastasis. Underlying these hallmarks are genome instability, which generates the genetic diversity that expedites their acquisition, and inflammation, which fosters multiple hallmark functions. Conceptual progress in the last decade has added two emerging hallmarks of potential generality to this list—reprogramming of energy metabolism and evading immune destruction. In addition to cancer cells, tumors exhibit another dimension of complexity: they contain a repertoire of recruited, ostensibly normal cells that contribute to the acquisition of hallmark traits by creating the "tumor microenvironment." Recognition of the widespread applicability of these concepts will increasingly affect the development of new means to treat human cancer. ~ http://www.cell.com/cell/abstract/S0092-8674(11)00127-9?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0092867411001279%3Fshowall%3Dtrue
Targeted therapies like Lynparza (a PARP-inhibotro) address just one particular somatic mutation or its effects of one portion of a person's cancer. It works by going after a single target, like the mutation that Dani's cancer has developed.
Here's a bco article on the topic:
http://www.breastcancer.org/research-news/experime...
And here's an article on PARP inhibitors in BRCA+ cancer:
Momallthetime - this is a lot of information to digest, but I know you're a researcher as well as strong advocate for Dani. I can feel your loving concern radiating through your every post.
I hope that this is good medicine for her, helping her outlive her prognosis with a good quality of life.
Sending the warmest of healing light, Stephanie
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I posted a "rant" on facebook, telling of the bumbling and stumbling system that lead up to my wife's first, late, diagnosis, and the present treatment dilemma she faces of what appears to be sinusoidal obstructive syndrome in her liver, that only showed up after starting chemo, worsened with each of the 3 cycles, and now the Onc simply wishes to proceed with a fourth cycle. I am worried the treatment will kill her before the disease. They seem to have conveniently forgotten the order in which this occurred, an outwardly appearing healthy woman starts chemo and despite the cancer getting "better", confirmed by both MRI and tumor markers, her liver is becoming more and more damaged. The nurse blamed it on my wife taking an extra week off, despite it having been given the Onc's blessing (as relayed through HER), and not even occurred yet. Frightening ignorance. And she is our interface with the Oncologist.
An old friend who is a Doctor saw the post, and has intervened. He has pulled some strings to get my wife's case brought up tomorrow during the case files discussion, with hope that input from other oncologists will lead to more careful consideration of the problem. We prayed, and I believe our prayers are being answered. As well, tomorrow my wife goes for having a permanent tap installed to allow more frequent draining of her ascites.
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(((Timothy)))
May your prayers and ours be answered!
It sounds like a second opinion is well advised now before proceeding to the next chemotherapy session.
I've had a permanent ascites tap (drain) for ten months and have written of it many times over the past several months.
Ask questions here or on separate bco topic/thread and I'll do my best to answer soon. Am a bit compromised myself right now, so response may be delayed.
Healing blessings for your wife and you both, Stephanie
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Thank you Stephanie, and I am praying for us all.
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Artist ,
I am so sorry , i was hoping you get a good run on faslodex also. But i happen to agree with Shetland, it is time to check and get another opinion. Why would they put you back on ibrance/ femara ? If it was right for you why were you taken off it? Please get another opinion . Keep us posted. My prayers are with you , hugs.
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kaayborg,
I do not believe you developed an allergy against carbo , it is just that carbo cannot be taken for a very long time like other chemos . When i did mine my onc told me the max we can do is 8 sessions. I barely got through the six . It was a very harsh chemo on my blood. I hope you get to stay on it if it is not dangerous for you.
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kaayborg, How disappointing if you have to stop carbo.....i hope they figure out a good next step for you. Try not to stress too much, it does no good for any of us. Easier said than done....
Good to hear from you Woody! I have another opinion at UCD tomorrow. Just nice to know I have a second person at a major center I can sometimes see. My Onc put me on Arimidex/Ibrance now but said that we could return to Femara up the road with NO Ibrance as she thinks the COMBO caused the issues. She originally stopped them both at once when my liver enzymes shot up which have since returned to normal. We still aren't sure which one caused the enzyme issues but will get a blood draw in two weeks to see where I am at with lowered dose of Ibrance. How are you doing Woody? I know you took a break from here for awhile. I hope you did some good stuff with your extra time!
Timothy, I am so sorry you and your wife are going through so much. I hope they get it freakin figured out! How completely stressful and scary.
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It IS good to hear from you, Woody! I do hope you are well. As for me, it is surely an allergy (hives, itchy, flushed like a beet), which is fairly common with carbo after the 6th or 7th infusion. They treat with Benedryl which worked when things got out of control so hopefully will do the same as a preventative. Hate to quit carbo, harsh or not, I feel well on it and it's doing its job.
Timothy and Artist keep us posted. I am thinking of you both and praying you find good info and effective plans.
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Kayyborg, so sorry you are having an issue with Carbo. I am not surprised. My daughter had a minimal time with it only. It was extremely difficult.And your explanation about the brca is just fantastic. Why could he not explain it like this. Just to confirm it says it's only .2%but it does not show any amp, for the ones that showed amp there were some suggestion of the therapies that she then tried and they did not work. So go figure!.
Stephanie, can't believe you put so much effort into this. Thank you so much, love the links, and you make it so easy to understand. I read the stuff, but believe me I gotta reread it. You write so eloquently. It's exactly what you said about being a professional patient. We gotta be informed, and try to ask the right questions. As I told Kayyborg I read it once, but I gotta study it now. And is BRCA really driving her tumor - especially if brca was not mentioned at all in Foundation 1 biopsy of the hip bone, in Jan. 15, but only now by guardant 360 (blood biopsy).
What you guys wrote seems like poetry. And someone else in a dif. thread sent me another link with the same idea, incredible. I call you guys, my peeps, my true friends. So helpful. I am wondering should he have not seen it back in Jan., when the blood biopsy was done. Would that not be able to be used asap. Why wait to get to this point, and only bcs I pushed him to spk with a colleague and review the plan. There are a few others that have the same low %, so maybe he should look into those also.
I am still working on the 2nd/3d opinions. And I still would like to know if the majority of ladies here, did you have a biopsy of the liver tumor done when liver mets were discovered? And any rads?
Timothy rant away. And you have all the right to do so. What was the delay in diagnosing your wife's cancer, if I might ask. This is what we have to do. For me my daughter going through it it's just as if I were going through it, but worse, bcs, she is so young so much to live for, her family, life and I wanna try to stretch this as long as we can. It's really absurd. I am sure it's just a bad dream and someone will wake me up soon. Hope you get good advise asap.
Thank you so much for all your help. Love ya.
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Bev got her drain installed today. They only were able to drain off a litre. Assuming the drain is any good, that's a record low amount for 6 days accumulation. We made a chart of her drainage history, divided by days between drainage, and it definately goes up and down. It's highest accumulation per day, 0.8 litres/day just after her xeloda cycle has ended. It goes down to as low as 0.27 per day at the early days of the beginning of her next cycle. That seems to correlate with time off xeloda. She is just finishing up 2 weeks off xeloda, and her accumuation is down to 0.17 per day, but she also just started on diuretics, so that has to be factored in. In any event, time off does bring relief. Let's hope it is fully reversable at some point in the near future.
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Timothy, just want to say that I admire how involved and dedicated you are to fighting this horrible disease with your wife.
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momallthetime, Yes I had a biopsy immediately when liver mets were discovered. They do that to check if the ER/PR and HER status are the same as the primary tumor which dictates what treatment to try first. I did not have rads as I have several tumors so I don't think it's advisable. Kaayborg, I had my 2nd opinion and she pretty much concurred with my Onc that switching was probably what she would have done too. I like this lady a lot. She has a very calm, intellectual, yet caring manner. Somehow she explains things in a way that instills a bit more feeling of optimism in me. I got there and actually got in EARLIER than my appt! AND she had completely read a huge stack of my records that the first Onc sent!!! I was impressed.....She mentioned a few other lines of treatment before I would have to move to IV chemo which was a relief and also a new combo we might try next. I just like having that 2nd pair of eyes on my case too! So for now it is Arimidex and Ibrance. Are you definitely off of the carbo and if so what is next for you? Hope it's something easy too.....
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Timothy, you are Rock Star ! hang in there, we all know this is a marathon.
Momallthetime, like Artist, I had a liver biopsy immediately after the CAT scan showed mets. Then started chemo 3 days later. The CAT scan said innumerable tumors. The 5 infusions of Taxotere has kicked those stinkin liver buggers to the curb. Bone & spine mets are popping up like pesky dandelions. I have not had a 2nd opinion. I live in a rural state, but there is a Cancer center 4 hours away in another state. I just have not had the energy, desire to figure out if insurance would pay for that. The Taxotere has made me weak & sickly. Maybe I will at some point. I think for the MOs, They try what's worked in the past, but it still is a hit or miss situation. Cancer is unpredictable
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