How are people with liver mets doing?
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BadAtUserNames - It's actually no secret that the livermetsters are the coolest. It is unfortunate that you are as cool as we are, but welcome.
>Z<
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Rats, sorry Bad. not what you want to hear but I am glad you have a good perspective on it. I hope the 3 combo has very do-able SE's for you.
Mom, thinking about you and Dani today. You need a long stretch of success for sure. I love that motto....
You also KD, hoping for a great next Tx.
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Momall. Everything is in place. We had dinner with the bride and groom last night and at 7:15 they realized that in just one week they'd be under the chupah. They were so excited and so cute. It truly makes me happy to see how they love each other. I'll post tons of pictures!!!!!
Babs
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Mazel Tov Babs!
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Thanks for replying momallthetime. Well it's worse then I think. My doctor did an mri because the radiologist forgot to measure my tumors and I wanted to know just how close they were to my hepatic vein and wanted to know if I had 4 or 6 so he ordered a mri. Well I have 10-12 little ones and my big one is 3.97 inches and the other big one is 2 inches big so the pet scan did not pick up all the small tumors. I was told by a technician that the pet scan doesn't pickup anything smaller the 6mm. Now I don't trust the dam thing. After I have pet scans I will have him order me mri's. I hope your daughter does well with her treatment and gets better. My daughter has big dense breast like me and she is 32. I make her get a mamogram once a year when it's only $50. She gets the doctor's orders and goes in October or May. For the first time I'm a little worried. Bless you honey!
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Well, I have a new "Favorite Topic" to add to the list. I am officially joining the Halaven thread. We met with KD's onco this morning, and he wants to start her on Halaven next Monday. He wants to give her the extra week to get all of the Taxol out of her system. Fortunately, it appears that the side effects will be pretty similar, and her schedule will actually be the same (2 Mondays in a row, then 1 off).
We got a bit of disturbing news today. It was our understanding that we were dealing with two sizable tumors, and numerous other "lesions" scattered about KD's liver. Her MO gave us the current dimensions of the two tumors (4.2 x 3.9 cm & 4.9 x 4.6 cm) then gave us the dimensions of the "conglomeration" of small tumors that show up like one large tumor at 8.5 x 7 cm.
I've read it here on BCO and I think it is true that doctors sometimes don't share the whole story with patients because they think it would be too overwhelming and counterproductive. However, it is beyond understanding that KD can be over a year into her treatment and we are learning about stuff that could have been made clear to us over a year ago. I can't fault her current MO, because he is not the one who did the initial assessment.
We had this same experience when KD developed the compression fracture in her T-2. Prior to that, we had an understanding that she had mets on 3-4 vertebrae. Upon getting a CT of her complete backbone, it was clearly revealed that she had mets on "all but 3-4 vertebrae". That had us wondering whether she had experienced progression or we had been misinformed or we just misunderstood. It was awkward to say the least.
I'm thinking of scheduling an appointment with her MO so that he and I can go through her chart so that I can get a clearer picture of everything. KD is not the type that wants to see all of that. In fact, that is why I am here on her behalf. She can't handle "getting to know" ladies on this board, then watching them pass.
Oh well, I guess I am through ranting. I appreciate y'all allowing me to be here as a caregiver on KD's behalf. I hope everyone gets some good rest tonight.
Louis
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Louis - they will tell you everything you can handle, so the appointment is a very strong message to your onc that you can handle more than you are getting. and the more you get involved the better this is going to go. in their defense, it is hard for oncs to read each patient correctly, so you have recognize what is going on and make your approach (I am deeply involved here) clear. just trying to reduce any anger and frustration on your part before you go in there, because it is a good idea and you will get more out of the short time you have if it is just about getting information.
sorry this is going on. you need relatively little functioning liver to be healthy but you do want to keep that organ humming along long term. ask about local treatments for liver mets like Y90, TACE etc. and if you get push back, go to a specialist. if i had that level of mets, i'd be investigating local treatment.
>Z<
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Louis - Agree with zarvoka here. Often oncologists decide how much to share based on what is useful, actionable or impactful to the patient. Try to get as much info as you can because that arms you to have further conversation with another oncologist (second opinion).
Have you discussed doing Ibrance treatment or even SOLAR-1 trial ?
Praying that Halaven works for KD.
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I just posted in the Xeloda thread that latest CT scan result shows my wife's mets are stable with Xeloda treatment so far.
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Z and Letmywifelive,
Thank you for your responses. I've got a call in to the MO about a possible consultation (not confrontation, lol) between the two of us. I'm a good bit less disturbed after a good nights sleep.
The MO wants to hold Ibrance in his back pocket for now, and we are ok with that as long as Halaven does it's thing. I got a good start reading on the Ibrance board this past week just in case he would have chosen that path. Now, I'm trying to read up on the Halaven board.
I will let y'all know how she responds.
Letmywifelive, great news on your wife being stable so far on Xeloda. Now, let's be so bold to pray for regression in her next scans.
Louis
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Buras almost always young people till middle age will have dense breasts. Even middle age women many don't just change to fatty breasts automatically. Anyway, I am quite schooled at it, she should definitely have at least a sono or even an MRI at least for a baseline and then every year due to your family History. It's a fact that nowadays they know that just saying Mamo is good and having dense breasts is misleading. They cannot really see even in 3D Mamos specificities. And it's best if she has this done at a place that only does Mamograms and so on. I have lots of experience with my daughters at this age and younger, so my antanae goes up! You could message me if you need more info.
KD – Halaven could be great.Good luck with that. I could literally feel your disappointment in the Medical world. I and many others feel the same. First just to clarify If you don't do this yet, make sure to get a copy of the reports after every single time that KD has a test. If it's difficult to obtain it from docs office, as in favors …then if it's easier call the place that you had it done and tell them to fax it to you, or if you have a good rapport with PCP have them fax it to him and get it from there. Also wait to get the CD. Or at least if they don't want to give it to you while you wait, ask it should be sent to you. I do this. I usually have the report before Onco decides to call. She usually does not. I email her and tell her the report is ready if she could look at it, and let us the poor souls know what's the next step. But I can't just wait till she is ready to let us know. And this way, I could look stuff up with Dr Google, get info from the wonderful people here, a lot of the lingo we know already, so she can't just be evasive about certain things. Like the last time, she was telling me that yeah, she sees progression from the liver blah blah and I am like yeah, BUT the ascites…aghhh, I hate when someone thinks you are too stupid to understand. And the mass in the lung. She didn't even, although Dani told her many times that she should discuss with me everything.
And most of the time I know things because I look at the report, and even that is not totally reliable. The last time, radiologist totally misread D's mass in the T1 and disc area, saying it was a herniated disc(which is bad enough) but the advice was surgery and not the radiation she ultimately had due to a miracle of another doctor actually looking at the images instead of just reading the report. I tell you all this, so you could learn from our experience.
And yes, you know Louis, I am right there with you. D also does not wanna "know" the ladies. She asks her sibs for names of books and movies that absolutely do not have "C" in it, we totally understand. Even more now, that there is so much going on in her body, and she still wants to be The Mom and Wife, so she cannot have this as part in her life. She treats it as a nuisance. Nothing to see here, move on. She's gotta make it to PTA.
I think some doctors (in any field) like informed consumers, they think it's helpful to e/o goal. But some like the idea that they are the Chief and we are their pawns or not worth it of their time. Just in and out of the office.
Letmywifelive wow we know you were so worried which direction the mets were going, so great that tx is working. Hope the SE's are manageable.
And yes, let's ALL be bold to pray for regression.
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This thread moves so fast I'm not keeping up well.
Bad, sorry to have you join us here but you are in good hands. Thinking and praying for you.
Letmywife, I am so happy to hear of this great news. Let it be stable for soooooooo long!
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Letmywife. That's great news!!!! Celebrate!!!!
Bab
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Hey Babs just waved to you on the other thread, so excited for you.
Kayyborg how are you doing?
Dani's ALP is going fast up and her Ca15.3 is going up, but gotta give time. So we are continuing with much hope.
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Mom - these drugs definitely need more time work. hang in there. i think Dani is correct in the way she approaches this disease, although she is very lucky to have you.
LMWL - I am so glad you are getting stable disease. When xeloda works, it works. hoping you found a winner.
>Z<
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Thank you all. I am really hoping that she gets a loooong time out of Xeloda. It is possible. Just need a little luck and prayer from everyone.
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You are so good to my soul Zar. Gosh I feel like the lucky devil to have you guys. I have to remember to ask or tell D to ask about Xgeva. Hope they will still give it with this mixture.
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I'm with you kaayborg, hard to keep up with these dynamic intelligent people. I'm trying though as I need to get up to speed with current thinking, treatments, research ect. Lately when my Onc asks me if I have any questions, I don't because I am overwhelmed with life. Need to change that.
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Mom, it is sweet of you to ask. I am very well. I suppose I should count it a huge blessing that cancer seems the least of my worries these days. My job has got me down. I love being a teacher but my principal, well for some reason I keep letting her kill my joy. What a stupid thing to worry about. You'd think I could get some perspective! That's it! No more!!!!! I need some blinders.
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artistatthe it's a tough go. Busy with life is good.
Kaayborg that's just terrible. Not to be appreciated. What's the problem with the principal? She is jealous of you? My other daughter is a teacher. She loves it. It's her true calling. She is the kind of teacher that students dream of. In her school that is actually very little involvement from the Principal, she would like more, go figure. She teaches High School. And you, which grade do you teach? It's absurd that you should have this pressure at work place. But it's life, so that's you worry about. Love it. D and I went shopping for pots etc.. stupid stuff, we forgot about IT for two minutes, was great. Take care.
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Mom, I teach first grade. I couldn't imagine teaching high school but I love hearing you speak so highly of your daughter, both of them actually. I realized some time ago that my principal's poor actions result from her own lack of confidence. So jealously wouldn't be completely off base.
Shopping for pots and stupid stuff, that sounds great and makes me smile. It's steroid night which is why I'm still up but I think I feel good enough to sleep now.
Thanks!
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Kayyborg oh this convo is so much fun. I keep smiling to all the stories DD told us about her experiences. Experiences they were. Wait, first she started with young Highschoool, then she was with 4th graders that needed help! She would wear her old glasses, old clothing. They would have tantrums, throw chairs, shoes... they were not diagnosed with anything exquisite just a lot of issues, home etc... The work that she put in, then she would spk to the parents, and she didn't want them to feel bad, so is was truly beyond, but I tell you she always liked it, and she did have our support, I think that really helps.
I really do agree that's her problem that she is like this. What if one day you would in a kind of way just tell her something. You know like...I am trying my best and I think you could respect me as a person, if you have a different view you could try to just tell me we could work it out, blah blah...I think it shocks them sometimes when you actually say something, hmmm I believe they call such people today a Bully! Stun her.
gosh you deserve that! You are a first grade teacher! It's so honorable.0 -
I just spent this past week subbing as a school assistant - para educator at two different elementary schools. Lots of recess hours. I have so much more respect for teachers and all the aids. I appreciated them before but being on the other side makes you appreciate them all the more.
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Mom, bully is a word that has been used to describe her. She feels threatened by different viewpoints so sharing yours results in push back, don't I know it unfortunately. I feel much better about things, though. Just need to remember who I am and not get caught up in the drama. Think of me Thurs. It's my evaluation observation. Can't wait! I'm gonna be full of the Neulasta muscle aches and on my steroid emotional crash. Great timing! Today I laugh. We'll see about next week! I may need your counsel again.
Have a great weekend, all! Leftfoot, thanks for the teacher love!
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yes left foot, nice comment from you! I was an aide for 6 years before I became the Principal's secretary and the appreciation was pretty nonexistent in our world.
also kaayborg, I can sympathize with a less than inspiring leader. My first principal used to direct me to do things like overspend out of budgets then throw me under the bus when the District called her out. She would pile HER work on me until I was working many times 10-12 hours without a word of appreciation. I could go on and on. She retired last year and our new principal is a gem and what a difference it has made in my life! I could not have continued on this year otherwise. Try and relax and just do your thing with your evaluation. You will get through it with flying colors if she has any integrity at all.
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Artist, sounds like your former and my current principal have a lot in common. I could go on and on, too! What I think I'm learning is there's no point in doing so. Venting is good but after a while it becomes toxic. We ladies know more than anyone that time shouldn't be wasted on such things. Now I've just got to live according to what I know. It's frighteningly easy to get sucked in even with the perspective that this disease brings.
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Very true kaayborg, it's very easy to get sucked into the negative venting especially when there is a willing ear to participate. It does get toxic. True also how our perspective changes with this diagnosis It has made any of that crud seem almost funny to me now. There is so much that used to grate on me that I just don't care about anymore. Of course it helps to have a much more positive and appreciative leader at the helm. On that note I made the stupid mistake of going back to the beginning of this thread to see what wisdom I could pull out that I may have missed. All it did was remind me of how many women are no longer here and I had such a terrible morning, alone, as I did not want to burden my husband who was busy. So I came here and instantly feel better and am ready to get busy myself.
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artist I know, i got chills down my spine reading about the "others". aghhh I have no words.
Kayyborg fingers crossed on the big exam. We'll be here for counsel when you need.
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Ugh, Artist. I know too. Truth be told it was exactly the loss of someone on these boards that made clear to me I've got to put a stop to what wastes my life. Never feel alone.
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Artist, I decided to clean out my private messages the other day, and I felt the same way you did when you read the beginning of this thread. I have lost some dear friends here during the past (almost) two years since my dx. I had to remind myself that the losses are far outnumbered by the people who are still living. It does not minimize those losses or the pain that is attached to them, but it keeps the hope burning inside of me. We are blessed and lucky, and I remind myself that some people on these boards have been living with this disease for a long time. I appreciate life and all my experiences much more now. Of course, I wish that it hadn't taken this disease to make me realize how much love and beauty surround me.
Lynne
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