How are people with liver mets doing?
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I had a biopsy done at MD Anderson and they were supposed to send it off for geonomics testing but they somehow lost the tissue sample! My liver mets is Triple Negative. If you don't change treatments, then what is the point?
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Z, my Onc wants to move on since he feels any progression in the liver is negative and the ascites are not being helped. So I am on to Gemzar starting Wed. He says I can return to Abraxane at some point, which did help the ascites, but he wants the neuropathy to get better, which it seems is staying stagnant to me. I do have trouble lately with my port as well, getting blood withdrawn, but so far they just flush again and it has been accessed up to this point. We will see how we do when I start IV chemo again.
kaption, thanks for the hugs! I'm sorry to hear of your progression too. I find it interesting that your HER status has changed and they are doing another biopsy. Both of the Onc's I've had swear that status rarely changes so no need for a biopsy. But I have heard of quite a few women on here that say the same thing and wonder why I am blowing through so many treatments. I had high hopes for Xeloda.....The ascites is the one thing that is affecting my QOL though so anything that helps that will make me happier. I hope your biopsy goes well and they find out you are a candidate for a whole new line of Tx.
JFL. I agree I wish there was something that directly dealt with ascites.
Shetland, I have received Bestbird's new version of the publication yesterday and she let me know about a section on ascites so will peruse that today.
MJH, I was on Fulvestrant for about 5 months combined with Ibrance.
babs, Have a wonderful time with that new baby!
Mom, thanks and praying for some pain control for Dani. I don't have much experience with that yet but do read all suggestions for later. Take care of yourself too, you are going through so much.
kaylynn, best wishes on Xeloda. it works for a long time for so many. I think it worked on a certain level for me but not enough to help with the peritoneal issues.
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Sometimes the test can indicate that there is a TX that is obvious to change to. Sometimes it will show alterations that show that your tumor is resistant to certan treatments. Those results plus looking at you clinical findings and recent scans can give a good answer for a better TX. But, I wonder why your MO won't order it for you? Maybe she has had experience that it has never given her a reason to change TX for anyone. If so, i can see why she won't order it.
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Kaylynne - I had Foundation 1 only because they sent my biopsy to F1 in error. F1 is a weaker test ... fewer markers, no immunohistochemistry. I insisted they do a second biopsy and send it to Caris. Insurance declined to pay for both F1 and Caris but both F1 and Caris eat the cost, they don't charge the patient. It's their strategy for creating a market for their service.
Did it inform my treatment decisions ... probably with time but not immediately. Many people don't get actionable information right away or ever from the report. But, it can give your doctors ideas for immunotherapy or targeted treatment options that are FDA approved or in trials. The problem is that your doctor is not interested in the avenues, which is why he isn't ordering the test. If this is of interested, you need to get a second opinion doctor lined up that will use the information to advise. There are also (free) consultants like emerging medicine and cancer commons that will give you options to propose to your doctor based on these tests. In the end it depends on how aggressive and proactive you want to be personally in your care.
What concerns me, however, is that they doing biopsies and getting even basic pathology (ERPR and HER2 status) as you progress. If you haven't gotten a biopsy in a long time, I would have some concerns about the doctor you are seeing because the basic drivers can change drastically as the cancer evolves in response to treatments. Consider a second opinion.
>Z<
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Z-My last liver biopsy was in July 2017 @ MD Anderson. They lost or used all of the tissue samples. Can each tumor within the liver have a different ER,PR, HER 2 status?
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"Can each tumor within the liver have a different ER,PR, HER 2 status?"
Probably not every tumor but tumors are heterogenous ... they don't all have the same pathology or genetics. That's the big weakness with genetic testing. In my case, I had two biopsies 6 weeks apart and, after a great deal of consideration and discussion with experts, i have concluded that the genetics were more similar than different. But there can be significant differences if you biopsy different tumors on the same day.
July 2017 is not that long ago, so I retract my concern. It's not uncommon to use up all the tissue they biopsied because they often get cores that are unusable because they have no live cells. Most of a tumor (80%+) is dead cells.
Xeloda is a pretty solid all purpose knock 'em dead treatment. I would go with that and see if you can get a decent run. I've seen people on that stuff for years and I am hoping/praying that will be your luck.
Have the biopsy/genetic testing/second opinion strategy in your pocket if Xeloda fails. The problem is the tissue has to be pretty current to be useful to inform treatment because the cancer evolves and mutates in response to each treatment that you do. You want to biopsy the tumor that evades Xeloda and use that information to inform your next treatment.
>Z<
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Thank you Z. You are always a wealth of information.
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Yes, every time I read Z, I learn something. After reading and learning for one year, I'm still not "there". But, if you look at my posts from one year ago, you can see how far I've come. Thanks Z for being my teacher.
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I am so frustrated right now. My oncologist is here in OKC. If you remember, I went to Dallas to Texas Oncology to talk about trials in December. That oncologist told me I should get Foundation One testing. The trial did not happen and I stayed with my Onc in OKC. I told her about the testing but nothing came of it. Move forward to now. I start Xeloda tomorrow. I decided to contact the Dallas doctor to see if she used the Foundation One information to guide the treatment plan. No she doesn't. I should stick with my current onc. WTF?? If we can gather all this information by being our own advocate and nobody uses it then what is the point? I am sick and tired of being my own doctor without knowing what the hell I am doing. This isn't helping me at all. It's only making me feel worse. I don't have the time, money or resources to search out the best doctor in the land to extend my life. I feel so hopeless. I'm going to do what I am told and whatever happens happens. I HATE CANCER!
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kaylynne I HATE CANCER too. I was so excited to get my F1 report only to discover the actionable recommendation was not even mentioned during my visit. Later I learned it did not make sense to change my TX right now. Putting together my scans and my clinical presentation did not make the change logical. I get it now.
But, in your case, I don't understand why they might order it if they have no intention of giving it high priority. Maybe that's the case with your OKC MO. Maybe she does not want to put you through another liver BX. Why don't they just explain what they think to us.
I understand what you're saying. In your shoes, I would think the same.
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Kaylynne I am frustrated for you as I read you post. It's hard to tell with oncologists if they just focus on the one direction they want to go and don't want to consider any other options or just aren't very good at communicating. My oncologist was also pretty dismissive of the foundation one recommendations. She said there were several treatments she'd want to try before the actionable recommendations in the report. For now we both hope Ibrance works for a while. My concern is looking for options is what next if/when Ibrance fails.
One of the men in my local cancer support group who has pancreatic cancer recently hired a doctor to consult with him on looking at treatment options for the future to provide additional input with whathis current oncologists is doing. He is feeling really good about the consultant and I made note of it as something to consider in the future.
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Kaylynne - You said it. That is actually the way it is. No is looking out for you but you. Can you believe it with all these pink ribbons fluttering? Drives me up a tree.
>Z<
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Live Big, I'm borrowing your "Fight Like a Mother!" I just might get a tattoo.
Nina27 I am beyond glad you are out of the hospital and the abcess is draining. I know nothing of abscesses.
artistatheart I know NOTHING on ascities, but apparently have them now. Could you please forward on that info you have?
What would we do without each other? I see a new onco tomorrrow and I'm thrillled, but all my questions I got from the wonderful ladies here. I have had such tremendous support from "the ladies that rock' which is my shorthand for the women on this forum, but in all seriousness, What would we do???
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kaylynne you said it all. WTF!!!! No one can understand it. One thing is for sure, article after article, book after book you will see stories of doctors when they or their family become patients they then realize what's this all about. The waiting games that they put us through, the indignities, their whole outlook, forgetting that we are Human beings and something attached to us, not the other way around. I can't shake off this idiotic phlebotomist (im not sure what degree she had) coming into Dani's Hospital room and when D told her to be careful with her veins she said, Oh you are chemo? Kid you not. Don't worry, Dani kinda ate her ear off.
But def, i felt the same way, i was working so hard doctoring these so called doctors, always looking over my shoulder, it's the bottom dollar that they worry about, that's it, nothing else. It's a real problem how much energy can one have to run around and figure out the best way to live, when they were suppose to devote themselves to this. I am sending you the warmest hugs, trying to keep you level headed. So sorry.
Guys I posted an update on Dani's thread https://community.breastcancer.org/forum/8/topics/... not a very good one. She is back to zero. Treatment did not work.
i'll check in on you guys, take care everyone, hoping Robin feels better soon, and Nina so glad they are trying to get you better.
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Incognito, I don't have that much info on ascites aside from the fact that ILC patients are more likely to develop this. Are you ILC? I keep trying to look things up but get rather depressed reading about it. There is a separate thread for us ladies called Peritoneal Carcinoma. Do you know if you have mets there? I started out having to get drained about every 6 weeks. Now I am at every week which is scary and discouraging. I hope yours are not causing too much discomfort. Right now I consider this my biggest problem as far as QOL. I was on Abraxane for a few months which knocked them out well but my Onc took me off due to neuropathy,. Then I was on Xeloda for 4 cycles which helped not at all, which was very disappointing. Now I am moving on to Gemzar and praying for some success.
Z, great explanation of tumor evolution. Very helpful indeed.
I am with all of you ladies who feel the Dr's just move through our treatment in some sort of tunnel vision. It seems like mine barely spends 10 minutes with me anymore and is rather dismissive of my questions. In and out, don't mess up my itinerary for the day! They seem to have no idea what we go through. Not to mention our Health Care system. I am still waiting for my Cobra card to extend my medical benefits since I quit work. The did not send me the paperwork until 10 days after my current expired. So by theme I mailed it back the next days, transit time and however long it takes them to approve and send me a new card, No treatment until then. I can be without treatment for 3 weeks or longer but no one can help me.
Mom, I am so sorry to hear of Dani moving back to square one. So painful and discouraging.....I pray things improve soon. God I hate this....
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Kaylynne - I know your anger and frustration. It is real. I feel I would not be in the situation I am now if not for all the lapses in judgement by several medical professionals from 2016 to present. I am always re-learning how important it is to not only have the talking points and questions in the list for the doctors BUT to insist that list is thoroughly explored and you walk out of the office w answers, a plan and understanding of where that plan is taking you. Take an advocate that will help you, listen with you and while not antagonizing the doctor, ask the RIGHT questions and voice their concerns too.
I am still better. My sense of smell has returned. It was gone for 3 months. Now everything is bothering me like when I felt decent. I am very touchy about smells. Taste, better. Hungry more often. Eating a lot of fruit in small portions, want fresh and cool stuff. Pain in liver so much less / maybe 90% on most days. Pain in right axillary, 80% less. Onward.
My oncologist appt is bumped to 5 days sooner. I need to explore the carotid artery issue where the lymph node cancer doubled from Oct 5 to Jan 6. Oh, btw, the one in Oct was the same and NOT INCLUDED IN MY PET CT scan report. But was mentioned in the Jan CT report. Can anyone see the issue - possible stroke. imo. And I was in the MO's office when he had the contrast CT and this was not mentioned. So I am going back early. Also about the center right lung lobe being completely collapsed now, not the upper. And this is a good oncologist. I want so much for him to be a keeper. I know we have to bend and forgive and understand and work with the mistakes and oversights, I know that.
That Kaylynne, that is the anger and frustration where there is no way to ever resolve it. They screwed up and won't admit it, none of the colleagues will throw them under the bus. And we have to find our answers and save our own arses without the full disclosure needed to do so.
Never give up. It can be done. Right?
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Bluebird, Kaylynee, et al - Never give up, it can be done ... as long as you are very clear on what you are dealing with.
>Z<
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Artist, just wanting to let you know that I've been thinking of you as you wade through all of these ascites issues. Z, how has that nasty port of yours been treating you lately?
Been so busy lately I hate I don't get to post as much as I wish. Always wanting to say so much to all of you. Doing pretty well myself. I think things may be looking up with new treatment...gemzar/cisplatin. It is tough on counts though so we are trying a day 1, day 15, 4 week cycle. Hope it works. Always lots of hoping.
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I am sad to report that Aurora passed away today. Her daughter sent me the news in a PM and asked that I post to Aurora's favorite threads. I will miss Aurora, but I know she is at peace and free from pain.
Hugs and prayers from, Lynne
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My latest Taxol run only worked a short time for my liver mets. My liver mets were going down. I start a difference chemotherapy treatment on Monday.
Ladies - What has been the size of your largest liver tumor? I feel any size liver tumor is too big.
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Lynne - we appreciate that you let us know about Aurora passing. Every time I hear news of one of us passing I feel tender, saddened and sobered. She will be missed.
AMW - I was told bigger than a football (NO, edit next line ) and matching side by side..
Noooo darn that auto correct on my ipad. GOLFBALL. Two lesions were bigger than a golfball, side by side on top of it. Sorry for the confusion.
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Lynne - I am devastated to hear that aurora passed away. Out of words at the moment.
Kaayborg - I have costochondritis, which is a collection of rib and chest pain symptoms caused by generalized inflammation at the rib joints. I have a sharp pain on the opposite side of my chest from the port, roughly mirroring the port location, and generalized pain elsewhere in my rib cage. The current thinking is that the port install triggered this inflammation at the rib joints and the sharp pain is referred pain from the port. It's much better. Still in pain but mostly mild and avoidable. I am working hard strengthening my abs and back to avoid using rib cage muscles. Not a bad idea.
>Z<
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AMW - it may be time for immunotherapy and a clinical trial. Abemaciclib plus Keytruda trial sounds promising, if your tumor is Rb-positive.
Another trial is just getting started, and in many locations, for select cancers, including TNBC metastasis, combines checkpoint inhibitor with a new drug that attracts T cells to the tumor microenvironment, with the hope of making many more people respond to immunotherapy than do currently. Not enrolling yet at all locations, but will be soon.
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So sad to hear about Autora’s passing. She will be missed. Again, shocked at how things took a turn for the worst the last few months, seemingly so quickly andout of nowhere. I pray for her family and am glad she is no longer in pain. Thanks for letting us know, Lynne.
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kaayborg: glad the Gemzar/cisplatin is working. Been thinking about you
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amw5: sorry to hear about your progression. My tumors were 3x3 but I have diffuse cancer throughout my liver. Carbo/Gemzar has really worked for me so far. Hoping it continues. Thinking and praying that your new treatment works well. I have TNBC as well
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Thx ladies. My new treatment will be carboplatin and gemzar. I've read about it working for so many and hoping I will get a decent run from it.
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Cure-ious - Thx for the info. It was a trial that I just withdrew from (since it no longer worked for me). My medical oncologist and I are always looking for trials that I qualify for. In the meantime, I'll be back on a different chemotherapy.
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Grannax-Thanks for your kind words. I think my onc is old school. She has been doing this for years and she knows best.
Liwi-I have never heard of anyone hiring a consultant to work with another doctor. How do you find someone like that and will insurance cover it?
Z-Pink is not my favorite color.
momallthe-I feel like it's all about the all mighty dollar too. They become numb to our situation and route us through like cattle in a shute. I am so sorry that Dani is back to zero. Keep us updated.
Artist-that's terrible! I am so sorry you are going through insurance crap on top of everything else.
Bluebird-My daughters or my BFF or my boyfriend go with me to every appointment and we all ask questions but I never feel like I am getting good or correct answers. She doesn't look at my chart or test results until she sits down in the room with me. I have found discrepancies and caught her off guard so I know she doesn't look. Typically, the nurse calls or faxes me the test results before I see my doctor. Mostly, I feel like she says an expiration date on my head and she is just going through the motions to get me there. Would it really be different with anyone else?
I started Xeloda yesterday and I have a year's worth of hand and foot cream so I am counting on this treatment working!
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amw5 I got PET scans and the highest uptake I remember was over 7. PET does not give size. Since my y90, there is no uptake. Just shadows.
Question, if I were to need another liver BX would I R be able to BX a shadow? Ha, sounds kinda funny. I guess they would have to do BX on one of the lung mets. The only reason I was wondering about this possibility is for a more current F1 if my MO wants more recent results. The one I have is from December 2016 BX.
Bluebird How do you breathe if your lung is collapsed?!?! I had a collapsed lung and my sats went way down and I had to have a chest tube! This was a while ago, unrelated to cancer. Yes, I would also be very concerned about carotid artery issues. Why don't they tell us this stuff? When we find out by reading the report, it creates distrust! It's so frustrating and so unnecessary.
Sometimes I wish my closest friends and family would read this thread. Do you suppose they would understand more if they could see how real all my concerns are? If they had this frame of reference would they think with more empathy? Like Auroras death, things happen fast sometimes, out of the blue. It's not always logical or predictable. My friends and family don't really get it. Of course they don't want to read all about it, too scary. Well, HELLO I'm living it!
Thank goodness I have this site for understanding and encouragement.💞
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