How are people with liver mets doing?
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Khaled,
Jaundice for a cancer patient is a serious issue. Have you contacted your mothers oncologist ? It's hard for me to tell but depending on the tumor load, chemo is sometimes the preferred treatment option
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I came across this article on Liver biopsy that makes me little nervous -
http://www.intechopen.com/books/liver-biopsy/compl...
You can see in the section "Mass lesion" that there is a small risk of tumor spreading following the pathway of the needle.
If anyone on this forum went through Liver biopsy, did your doctor bring this up with you ?
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I was told of this risk. In my case we decided the risk of not knowing if my tumor type had changed was greater than the risk of the biopsy. You will have to decide for yourselves what risks you are willing to take. No one can decide that but you. We really needed to know if I had changed to triple negative BC or not as it would have greatly impacted my treatment course.
But that was my choice.
May you be able to come to a decision that you are comfortable with.
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I see your point. In my opinion with metastatic disease, there is already a spread. So the damage is already done. For cancer that originated in the liver and has not yet metastasized, I believe the concern should be higher. The article also states that the chances of the biopsy spreading cancer is about 0 to 0.13%. As you wisely mentioned the risk of wrong treatment is much higher.
Thanks for your insight.
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Letmywife
I had a bad scan again w/2 cycles of taxol. Choice will be a trial or Xeloda. Could you explain what the Foundation 1 & Functional test are. Also, I have had the liver bio & no wasn't told anything but seems sensible that could spread cancer. I'm in a down spiral right now emotionally. Best to your wife & you.
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share the hope- sorry for your news. Xeloda has been a wonder drug for me. So I am holding out hope for you that it or the trial can help you. Many hug
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sharethehope,
I am very sorry to hear about your bad scans. I know the feeling. Would you mind sharing what treatments you have been under so far and from when ?
The functional testing is something done by an institution called Rational Therapeutics (https://www.rational-t.com), led by Dr. Nagourney. Its an interesting approach where they take a tissue sample from you and test it with different chemo agents to see which has the most effect. No genomics involved. However, there are some caveats in my mind. First, cancer treatment is very much dependent on the cancer cells response when inside a human body and not in a petri dish. Thats why clinical trials are so important where real patients are tested for response. Second, they need a large tissue sample, meaning sample collected using a CT guided needle biopsy may not be sufficient. Third, I am yet to meet an oncologist who has high confidence on this type of treatment. Fourth, it is possible that they give you a chemo drug thats not for BC at all but they give it because it worked on your tissue sample in a peri dish. So, you need to really weigh pros and cons and they are not really promising a cure, just longer OS. We decided not to go for it.
Foundation 1 is genomics testing where they look for gene mutations for helping current or future clinical trials. It has mixed successes in my opinion but it is something that most oncologists will not mind arranging for you. Good to have it in you in my opinion. My wife will be doing it.
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Letmywife, When I had my biopsy on Tuesday, my number 1 question to ask the radiologist, was about spread. He made me feel much better by the low percentage of this happening. In my case, the risk was worth it, so my oncologist can figure out what were dealing with. I just failed Xeloda and I was in shock! I thought for sure it would work for me! So this really pushed me for a biopsy. I don't have my results yet, but I am praying I am still ER + HER2 -
Robin
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Robin,
I will be eagerly waiting to hear about your biopsy results as I wait for my wife's at the same time. She got her biopsy done today. What I am praying for is still ER+ but more than that HER2+. There are so many highly effective treatments for HER2+ disease.
Although it is early days, remember that TNBC is the prime candidate for nearly all Immunotherapy trials for BC.
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LMWL - I knew that there was a small risk of cancer spreading in a biopsy but knowing the number (.13%) is great. Of course I wonder how they guessed at that. Choosing between the possible spread of cancer and the probable miss diagnosis is easy for me but definitely a personal decision. Great discussion. Great information.
The article notes that using a a coaxial approach reduced the risk of spreading the cancer. No idea what it is but something to ask about.
After reading the article I am a little more concerned about the things that can go wrong... puncturing this or that. Oy. I will be sure not to wiggle if I have it done again. I do need Valium to relax, not care and above all stay still.
My experience of the procedure was that it wasn't a big deal. I will say I lucked out and got the head of interventional radiology and I think things can go one way or another depending on who's driving. Choosing the right doctor to do it is one thing you control.
Thanks for the deep dive into rational therapeutics. Getting enough tissue does seem to be an issue. It looks like something you do to choose between chemos not hormonals. But if you are in that place, they get results. If I need it and I can get the tissue I will do their test.
I am not surprised at the response of other drs to rational therapeutics. US system does not support doctors that push the envelope like Dr. N. I am becoming more and more skeptical that the oncogene theory wil buy me more than a few months here and there. Listening more and more to the Cowboys.
Awesome discussion. Always interested in how you see things as situations are very close. No real map for MBC after the first or second line of treatment.
Z
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Letmywife, In a weird sort of way...I was hoping I might be HER2 +, so I could have access to the HER2 meds. But then I thought...my luck I would be HER2 + and then none of the drugs work. I know I should not let myself go there, but with my recent fail of Xeloda..my fear is growing. My radiologist took several samples, most were painless. But a couple of times I heard a clicking sound while he was getting a sample, and those hurt. My oncologist will have a sample sent to Foundation One.
What current treatment is your wife on? Did her oncologist tell you how long it would take to get results?
Thanks,
Robin
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Robin,
Yes I agree that with this disease you can never hope too much. It sucks. The doctor doing the biopsy said it will take 2 - 3 days to get some of the results back. I guess F1 will take more time.
She is not under any treatment right now. Spots showed up in her liver while she was on Ibrance + Letrozole for bone mets. Now she is waiting for the biopsy result to start next treatment (possibly Xeloda if tumor characteristics have not changed).
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Letmywife, My liver mets popped up while I was on Ibrance/Faslodex, then went on Xeloda for 2 months with no success. I am off treatment until results come back and I meet with head of clinical trials. It is very scary being off treatment!!!
If the clinical trial people drag their feet, and I am still ER+...then my oncologist suggest the AA combo. I was supposed to hear from Sarah Cannon today with an appointment for Monday, but never heard anything. I even called them and left a message. I also know the head of clinical trials is only there on Monday's so that would make it the following monday. I have to be off treatment for 30 days for a trial and that day will be Jan 30th. So I could start treatment Jan. 31st if they would get their act together. I am starting to get frustrated!!!
Robin
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letmywifelive
1995 found lump, 96 had mast, 3 yrs tamoxifen, 2005 reoccurrence, lump ect, radiation, 8yrs arimidex, 2013 stage 4, flaslodex 1yr, Aifnitor & aromasin 8 mo, Halaven, CMF 5 mo, Doxil, Gemzar & Carbo, Taxel 2 cycles, now waiting to see it the great ozs decide on tral or Xeloda. Very depressed. Have had gnomic test first of yr. showed no change but some liver tumors have decreased, some increased. Onc also says Y90 not approved for bc. have to check on that. Also says it may remove liver tumor but cancer elsewhere would do worst. Have to check that also. Part of my problem is that I have had cancer a while & I am 75 so not important to these onc. Onc started his last visit saying "well you have had cancer a long time etc". Very upsetting. Your wife may be near my age but she has you. A man makes a world of difference. The "you are old & have had cancer a long time started the day the lump in my neck was discovered. I've had one foot in the grave from the start. Getting second opinion but from associate of my onc. Would like new onc, 2 best onc have left. In very bad mood.
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rpoole1962
I also am hoping for a change in either hr or her to have more options in treatment. onc wanted to wait a 1yr. ?????? now it will be If I go to a trial, if not or if they don't need a biopsy I will get another one.
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Sharethehope, You definitely need a second opinion from a different oncologist. There are many different treatments to treat liver tumors...RFA, microwave ablation, SIRT (which is the same as Y90 but using therasperes). And it can be done for breast cancer patients because I have met with an interventional radiologist and I am a candidate for SIRT. And I don't understand him telling you that it might help the liver tumors but the rest of your cancer would get worse. This is absolutely false!!! The liver ablation procedures are not going to make the other cancer worse. The only way the other cancer would get worse...is if you fail the therapy you are on.
Just because you have been dealing with cancer a long time is no excuse for him to not treat you the same as anyone else who is dealing with this beast. Have you already been on Letrozole and Ibrance? I didn't see it on you list of treatments. If you are ER positive then letrozole/Ibrance would be a good treatment option for you. Please get a second opinion and find someone who takes your disease seriously! I had to go through 3 different oncologists to find someone who fit for me. Someone who doesn't do all the negative talking. I am a positive person and need a positive oncologist.
Please keep me updated on you treatment and your oncologist.
Hugs,
Robin
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rpoole1962
Onc said Y90 wasn't FDA approve for bc treatment & I would have to foot a $100,000 bill myself & of course it wouldn't be successful anyway. Just didn't understand logic to anything he said. The second opinion dr would be from his group & I'm not confident on that. No I haven't had Letrozole & Ibrance. My last onc, that left, was going to use that next but since scan was bad this onc went to taxol which didn't work. Since this last scan wasn't good either, onc wants xeloda or a trial. It bothers me that he isn't familiar with bc trials either. Very, very nervous. Going to try calling around about validly of Y90 approval. Just scared. It bothers me that some tumers respond & others don't
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Share -
If you have really aggressive presentation, chemo may be the way to go. Ibrance and letrozol is an option once the recent progression has been beaten back a bit and controlled but I get the logic of going with chemo now. Xeloda is a good drug and a reasonable choice as are trials. Local treatment of metastatic cancer is often not used if the mets aren't causing pain or impeding organ function. The treatments are not easy and the outcomes don't clearly show benefit. What you are being told is "standard of care" and reasonable.
But cancer is complicated and those generalities may or may not be true for you. I support what Robin says ... your doctors aren't fighting for you and it is your absolute right to fight. The fight begins with finding a doctor that has your back and that you trust.
At a minimum, you want a second opinion from someone outside the group where your current oncologists works. Oncologists within the same group will never disagree. They consult each other before they give you their opinion. Whatever disagreement there might have been has already been worked out.
Go to an NCI cancer center.
>Z<
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Share, I agree on getting a second opinion from a different cancer center. Most cancer centers have a weekly meeting where all the oncologists present their cases to the group and discuss what to do. It is not likely they would throw a colleague under the bus. My oncologist told me this. He has also told me on several occasions that they discussed my case at the meeting.
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share, start hitting them with "I statements". I feel confused, I need more info, I wonder about Ibrance, etc, etc. Be firm, and write what you want to say on paper. The fact that you are 75 and have had cancer a long time should have no bearing. If there's a social worker at your MO's office, talk to him/her. You go girl, we're all in your corner. love and hugs, MJH
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Thanks for the encouragement. I'm so tired & steroid pill to give me energy isn't helping only keeps me up at night & sleepy next day. What its suppose to help avoid. Plus been fighting w/Consumer Cell since Dec 31 when they messed up my service. All my medical info is in Ph. Now they want to sell me another ph. Way too many greedy people in world. Thanks again for posting. Senile granny lol
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Has anyone been enrolled in either the Alliance A011203 or the Entinostat/Placebo + Goserelin clinical trials? If so what has your experience been? MO has recommended we switch up treatment since I am stable. Currently evaluating various options.
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Letmywifelall I could say that I have been begging them to do a biopsy for Dani's liver mets, and doc does not think it appropriate. I would have liked because I keep thinking what if it shows a different property than the other biopsies she had done, but Onco thinks it would not change protocol, and she does not wanna mess with the liver. Her liver is pretty much full with tumors, with Xeloda it has gotten very few to a lesser size, but so far it was not significant.
She had the F1 done then one yr later due to progression Guardant 360 biopsy and both confirmed the same dx. I still would like to do the liver biopsy, I'll give it some more time with Xeloda but if it doesn't change on the next Pet/CT maybe I'd try to push some more.
Also, I keep thinking if an MRI would show more details in that organ, but they keep doing only the Pet/Ct. the truth is Onco discusses e/t with a tumor panel, so it's not only her opinion, but I still would like more details.
Robin so sorry Xeloda did not work for you. I also put so much into it that this would work for D's liver tumors. For her, Onco said it's way too many lesions for ablation. It grew from 2 very small ones, to multiple within about 4 wks we were stunned. But then Onco dragged her decision to put her on Xeloda bcs she was afraid of toxicity and QOL, so they put her on Navelbine (did nothing for her), she was on Herceptin and Ixempra also. So they finally changed to Xeloda 2000mg a day, after 2 scans were showing no improvement on Navelbine. Now she is on the 4th cycle of Xeloda. Still hoping. They are too cautious I think. She is young and very very petite ( at this point her weight is minimal), I'd like to see them be more aggressive.
Zar thanks for the info about the "reasonable" approach, it makes me feel a little better. Happens to be that's what Onco tried telling us, I just don't like to hear it.
Sharethehope I am sorry but this guy seems way out of touch. And when a doc talks to you like that, there is not too much hope he will do his best. I don't think you have a/t to lose in going to someone else. Oh my gosh you are a baby at 75, it's the new 50! You kidding! Puleaze, attitude is more important. I've seen young ones very sick. Age per se, should not be a barometer what your tx should be. My mom was 95, she behaved like someone in her 60's. Jewelry to her last day!
Awaiting with you guys on your biopsies!
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Biopsy update: My liver biopsy revealed I am still ER + 90%, PR -, HER2 -
I was hoping to gain PR back, but no such luck. I meet with the head of clinical trials next Monday to discuss options. They said my past hep B diagnosis will disqualify me from a lot of the trials. If I don't do a clinical trial, they are suggesting I re-try Letrozole & Ibrance with a scan at 6 weeks. The reason for the re-try is because I didn't have a fair chance with it, since I was wrongly diagnosed post menopausal.....when I was not!! Now the ovaries are out, no question I am post menopausal. I pray it works for a long time, but if it doesn't my MO is recommending the AA combo. The AA combo scares me to death!
momallthetime, I was also on 2000 per day of Xeloda because of my small frame of 106. I never got hand and foot, but was severely nauseated on a daily basis. My radiologist said a MRI will show more than a pet/ct. I had to have a MRI to proceed with ablation and the MRI picked up 2 more lesions that the Pet/CT did not. This finding disqualified me for ablation.
I think about Dani all the time and pray something comes along that will work for her for a long time. I wish this for everyone!!!Letmywife, Any biopsy results yet?
Robin
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Thanks so much for your sweet support Robin. Interestingly Dani was first dx 98% PR and then when biopsy came back at the time of mets, it's just PR1% , so it's ER+PR-HER2+ .hope you get into a great trial soon. Fingers toes crossed.
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Robin,
No results back yet. Probably tomorrow or day after.
From what you described, trying out Letrozole and Ibrance makes perfect sense
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Robin - go for the retry! Very interested in how this goes.
>Z<
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mom,
Tough decision about doing liver biopsy. I hear your logic and also that of the oncologist. Have you asked for a second opinion ?
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Xeloda is continuing to work well as firstline treatment of my wife's liver mets. She had numerous small lesions, and a large area of diffuse cancer. She started on Xeloda around May 2016, treatment seemed to trigger hepatic hypertension and ascites, which has gone away, but left her with an enlarged spleen. MRI shows stability, and tumor markers continue to fall, liver values continue to improve. Thank God.
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Timothy so happy for you! Forwards you go.
Letmywifel appreciate your response. Re:2nd opinion. As is right now, my daughter is going 3 weeks in a row, and then there are scans in between so unless I really feel uncomfortable we try to avoid it. My plan is I think, to wait how things would change with the next scans, by then the Xeloda would be in the body much longer. Also, I do know that Onco discusses (she has to) with a tumor board so it does make it a bit easier to accept. But, thanks, it's def in my mind the option of going for a 2nd opinion. Also, I am not sure Pet/CT is the best modality for liver, but it's something I still don't know for sure.
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