How are people with liver mets doing?
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Mama/Alissa, good news that you are stable! How nerve-wracking to have to keep calling trying to get results. That's how it happened for me this time, too. But the nurse said she had left me voice mail twice, though I never got it.
Kaayborg, I'm glad to hear things are going in the right direction for you. (Is Bridge of Spies very violent? I'm a "sensitive viewer".)
Artist, I will be thinking of you tomorrow on your scan day. The luck of the Irish to you. I did wear green to my scan, and I thought of you.
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Shetland, I had my confidence shaken with my Onc when she contradicted me on some med info then dismissed me. When I came home and looked it up again and saw I was correct I had to talk with her, even though I was a little intimidated. It helped me a lot to feel I was acting as my own advocate and she was much more sensitive and attentive on our next meeting. I am so glad you got that chance too and got some answers right away. It makes so much difference in our well being. I failed Ibrance and Femara after 3 months because of elevated liver enzymes and she put me on Faslodex too to try a different mechanism. She thinks it was the Ibrance that was the problem and I may be able to return to Femara someday.
kaayborg, I hope those meds keep shrinking those tumors all the way to NED. Thanks for the best wishes tomorrow! I'm going to get that movie too although like Shetland I'm a "sensitive watcher" when it comes to too much violence! Yah! Good news for you too Mama! Welcome mary and Babyruth!
Thanks for the best wishes too Shetland. I have to wear green as I work at an elementary school and the kids get VERY disappointed if I don't! Plus I'm 3/4 Irish!
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I didn't mention the glitch today (the glitch that she had emailed that everything seemed unchanged) during the phone call with my onc. Along the lines of kaayborg's opinion, I thought that would only cause damage to our relationship without doing any good. I imagine she just skimmed the report in her hotel room, or only heard from the nurse whose favorite line is "within normal range". Or maybe she was just wanting to wait and see before alarming me. In any case, her response to me when I pointed out my concerns was all that it should have been. To me this was different from having the wrong facts about a drug. It sounds like you handled that well, Artist, and that your onc learned something about relating to you, her patient. Now, I did fire my first onc for forgetting our conversations between appointments, reading someone else's records on his computer while he was supposedly talking to me, and saying, "It's up up you" whenever there was an important decision to make.
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Shetland , i am so glad you talked to your onc and that she made you understand her point of view. I believe she is right though if the changes are very subtle and mild , maybe you should wait a little before considering this treatment a failure. Faslodex is a good choice and is know to work well on ILC. I believe she will recommend Chemo if there is a big progression God forbids.
But i am glad you feel more at ease, don't let go of the hope yet. It maybe a simple inflamation like she said. Two scans back i felt the same as you bloated and reflux and all the usual symptoms , when i did my scan there was nothing wrong. It turned out to be lyrica which i was taking for neuropathy.
Femara causes all kind of SEs , if i remember correctly when i was on it , most of the time i was on nexium, ibrance may cause this also. From what i understood from the ladies when on ibrance they got high liver enzymes. Some cancer meds are good for cancer but not good for the liver. I hope this is simply your case.
Keep informed and i hope you soon have your mind put at ease. Do not lose hope.
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Thank you, Dear Woody.
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Shetland, this is good that you got some information. There's more I want to say but work is calling! As for the movie, I would certainly also be described as a sensitive viewer. I don't remember anything too violent. It was bigger on drama. Mostly, I just remember being surprised I actually liked it a lot.
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Kaayborg, I recently saw Bridge of Spies as well and it was excellent! I would definitely recommend it to everyone here. It is not gory, violent or anything. Laughing about the "Would it help?" line. That guy won a Best Supporting Actor award for that role.
Shetland, I read your posts and felt like I could have said most of the things you were thinking and feeling about your fears, frustrations and questions over whether your lifestyle is a factor. I have had the same thoughts/fears about my own situation. However, as an outsider, I would definitely tell you not to be so hard on yourself. You did not cause this recent PET flare! Also, although NED or NEAD is our holy grail, many others here live a long, long, long time without a "clean" bill. "Stable" can work just as well as long as you aren't having side effects from your mets. You are doing the right thing by pushing your doctor for the information, urgency and answers you need. We are literally fighting for our lives and no one in your doctor's office will care about your life and pay as close attention to the detail as you. That is your role. The doctor sees tons of patients, many of whom may remain in the "stable" category for a long time after showing a hot spot on a PET scan. I also think that doctors don't want to toss a medication too quickly until it is clear it is not working. So, don't be too disappointed. Just know that you are your own best advocate, regardless of whether or not you have an MD after your name. The oncologist is there to inform you with the medication info you need and facilitate your treatment but you are the ultimate self-advocate. That is how I look at it, at least. I don't mind being annoying and pushy when needed, particularly under the circumstances! You are fortunate you are strong and well-informed enough to advocate for yourself! Some just don't have it in them to do that.
Woody, I always enjoy reading your posts.
Artist, I am glad Faslodex is going well for you and your enzymes are under control post-Ibrance.
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Thank you for the encouragement, JFL. As much as I do like my onc, I worry about someday being to ill to keep track of everything the way I do now. As you say, they see so many patients. The most important thing is I feel I can trust her knowledge and judgment, even though she may misspeak once in a while. But I still need to understand everything and explore my options. She seems to get that. I see you have changed treatments recently. I hope you are feeling well and will see good results.
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Thank you JFL, i do hope you soon give us good news about Xelda working for you. Best wishes.
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Shetland, I feel the same way about keeping up on current meds/treatments if I get too ill. There is just soooo much to learn and know and wonder about. And since you are ILC like me, it seems even a little more complicated as to what options we have or what should come next. It is exhausting trying to keep up and live your life at the same time. Luckily I learn so much here, it is incredibly helpful to hear it from women going through it. No BS just the facts Maam!
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wow, so much going on this thread when you look away for a few days! Have spent a good hour or so catching up, laughing, crying and generally feeling upbeat about all the love and support on here.
Had treatment today using my lovely new power port. It's very small and round and I can barely see it, it's the latest model so they tell me! The nurses were all very excited and came to have a look at it, all of them so pleased they no longer have to play chase the vein along my one good arm.
Been thinking a bit about a few posts back the discussion about when things just get too much for us and the dark clouds descend. I work with refugees and asylum seekers and can always look around and see people whose lot in life is far worse than mine. When you hear about someone who has lost every member of their family in a mindless conflict the mind just boggles as to how they carry on. I also think a lot about my beautiful cousin who ran a riding school for disabled children and dropped down dead of an aneurism at the age of 50 or my lovely neighbour who would do anything for you despite the fact he had renal failure and had to go to dialysis four times a week without complaint. A local footy star died here a few weeks ago of a massive heart attack whilst out riding his bike. I could go on. Crappy and terrifying as this disease is at least we are blessed that we can make the most of our time with our loved ones and really relish each day whilst we still can.
Enough of my ramblings. Doc thinks my liver definitely feels smaller in fact she said the right lobe now feels "empty" hurray!
Have a good weekend everyone.0 -
Isy, You are so right and sometimes it helps me a lot to bring this to my attention. Sometimes I feel so alone in this fight but then remember that there are millions of people suffering all over the world, It really does help to put it in perspective and make me feel more a part of all mankind and less sorry for myself. On that note I got my scan results today and preliminary says Stable to slightly better! She said we can talk about the smaller stuff then so I wonder if there has been some progression in one spot and improvement in another. Whoop Whoop! I am so happy with her for not making me wait until Monday and will take this news with a happy heart.
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Artist! So, so glad to hear this!
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Artist, such brilliant news! stable is good, slightly better, a real cause for celebration. No matter how little the steps, all going in the right direction. So pleased for you
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Artist I'm thrilled for you!!! Happy dance time!!!
Babs
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ok, so probably not the right forum to post this but I am feeling bummed out and you have become a good support system. I had an echocardiogram today and saw the cardiologist who follows me. To summarize, my ejection fraction is down to 40% from 55. This resembles what happened to me last time I was on Herceptin. They will do another echo in 3 months to see if this was a blip or is a trend. If it is a trend, then I will have to take a break from Herceptin. I worry because a lot of the other targeted therapies are more cardio toxic than Herceptin which will limit what we can do. Of course this all could be for not, but we all know how it goes. Putting this together with my higher (but normal) tumor markers and I am a bit worried. trying to stay positive but for now feeling like hot run over by a car. Tomorrow I know will be better but today sucks. I hate this dam cancer and all the worry it causes.
Thanks for the support
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left,
I am sorry honey , i remember a while back you had the same problem. I hope this one is only momentary . But let me tell you something. I started herceptin, perjeta with taxola year and a half ago. The taxol was stopped after six months. During this time i was being checked for heart ejection every 2 months. About 8 months ago my ejection went down to 40 . I was given concor cor and ramipiril and i skipped one dose of herceptin perjeta. It went back to 55. Then we did other tests which showed my heart reserves are healthy.
2 months ago the same happened , i did not skip my doze but my heart doctor increased the dose of ramipiril. Now next week i will have another echocardiogram, if it is low i will skip the next dose. What i want to tell you , you may not have to stop it for a long time. As long as your heart reserves are good it is always reversible.
If your marker is a little up but still whithin the norm do not worry. Sometimes it differs in labs by few points.
I hope you soon feel better and your ejection goes back to normal. Keep us informed. Prayers heading you way. Hugs.
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Left, I'm so sorry to hear that you have new crud to worry about. I am glad Woody has some great advice and experience to impart and I hope it all clears up soon. 3 months is a long time to wait and worry......Although it seems that every time I hear of someone with a new dilemma the Docs come up with a solution to alleviate the problem and I think they will for you too. Try to hang in there Left, tomorrow has to be better. Thanks all for the well wishes.
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Don't mean to be a bitch, but it would have been nice if you all would have given HoleInOne some support with a new diagnosis
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sas- schati
I am sorry I missed her post. I was away and did not see the post as I am several pages behind.Going back I did see at least one person did respond.
I am sorry as this is a group who supports each other. I hope she gives us a second chance as I do believe there is much support and useful information to be found.
She's lucky to have you looking out for her.
I hope you give us the benefit of the doubt as well. I know you have the intentions. So keep an open mind.
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holeinone-
Sorry to have missed you. I hope thetaxotereis doing its job and gettingvrid of those lesions.
My initial mets diagnosis involved a liver so full of rumors that the liver specialists said they couldn't help me. That was over3 years ago. I had one relapse and that solitary tumor was removed surgically.
I say this because there is hope.
Make sure you are getting something for the pain neulasta causes. Claritin d is the best for that. Don't ask me why. But it works.
I wish you the best
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Holeinone, I went back and found your post. I'm sorry I was so upset myself that day, that I failed to respond. If we had all been in a room together at the same time, instead of on an internet discussion board, we would have all been in a group hug. I'm another with ILC and liver mets three years later. How were your liver mets discovered? When will you get a report on how the cancer is responding to taxotere? Hoping you will have good response and minimal side effects.
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Holeinone, welcome to this group. I hope you find the support here that many others have found. A liver mets diagnosis can feel scary but there are many women that have lived years and years and years here with liver mets. These threads move so quickly sometimes that I must have missed your original post. I love being a part of these threads but am not the best at keeping up when they move quickly! Thinking of you this weekend.
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Artistatheart, I'm so glad to hear that your onc called you with a good scan report. Ugh, I wish you didn't have to wonder what the "little things" are. But, yeah, let's focus on the stable to slightly better.
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Artist,
I am so happy for you on you scan results yayyyyy! I hope faslodex keeps working and that your next scan would be even better or clear
. Do not worry much about the smaller stuff , if they were too important she would have mentionned something. Keep us informed. Hugs.0 -
Thanks Sas for pointing that out. Holeinone, I think that we were all so focused on Shetlands new worries that we inadvertently passed right over you. So again welcome to the board no one wants to belong to. I too hope you will give us a second chance. You will find a lot of support and advice here. There are a lot of women in the same boat who have been going for a long time. Take it one day at a time and remember there are a lot of treatments out there for you.
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hellos ladies, my mom has been just diagnose with liver mets. I'm really scared everything has happened so fast, in Dec she went for a follow up, had ct scan done,they had found spot on her left lung, they said were not concerned. Three months later they repeated now it shows three hepatic lesion on the liver 1.4 cm, 1.0cm and 8mm possible another one close to gallbladder. Chooses were hormonal therapy tamoxifen once a for three week and week off or do nothing. She has bad pain she said she is sure that is arthritis and not Cancer. the lungs she said she is not convinced it is cancer. Even though there are more tiny nosules on the right lung as well.
My mom decided to do taxol.
I want to know if this is the standard for stage 4.
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Hello, coni. I'm sorry to hear of your mom's diagnosis. It is scary. Once she settles into treatment, you will probably both feel calmer. I'm a little confused about the treatment options you mentioned. Did you leave some words out? Maybe it was hormonal therapy, or taxol (cycles of three weeks on, one week off) or nothing? What did the doctor recommend as the best approach for your mom? Is your mom satisfied with the plan? I had extensive hormone-positive breast cancer liver mets that needed fast treatment, and my onc said taxol was the best thing for it in my case. In other cases, people can start with hormone therapy, because although it can take longer to work, it has fewer side effects than chemo. The plan has to be individualized for the person.
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hello Shetland Pony, I guess my phone was acting up.
Yes, her chooses were, Hormonal therapy, chemo or do nothing. She was more keen on the hormonal, but we are freaking out, so she choosed chemo. onc csaid that the mets were small, but in three months there is a 1.4 cm, 1.0 cm and 8 mm and maybe a 6mm. Plus the lungs, onc says she is not concerned, however she started with 6 noduler on the left lung now the right lung has a few too. I don think they have grown a lot, that's why she thinks is not cancer.
I hope that taxol is not too hard for her, she said it was much better since is giving in lower doses.
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Yes, the 3 weeks on, 1 week off plan is supposed to be easier than the other way. Personally, I found it very do-able. Here is a link to the Weekly Taxol for Stage iv thread in case you two want to read and/or join it.
https://community.breastcancer.org/forum/8/topics/...
It wouldn't hurt to get a second opinion, and to ask if a PET scan and/or bone scan would be appropriate to get more information about the lesions/nodules and the pain.
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