How are people with liver mets doing?
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Thank you all for your comments and support. Yesterday they put in my port and decided to also check out my sentinel node, since I didn't have the initial surgery that would have done it. My doc was so nice to do that. Sent to Orlando for the radioactive stuff they use to identify it before the surgery and stayed late to do both surgeries on me. I have the nicest doctors around... and they are good and smart. When you have that, you do go forward with more confidence.
My problem is I talk more and more, the more nervous I get, so wore out just about everyone, but I DO have some good stories, (since I've been around a long time and had an interesting life), so I think they enjoyed a few of them... LOL It helps me keep upbeat. So today I go back to painting and that keeps me upbeat too. Won't let me swim for a week, but I can walk in the pool. I try to focus on doing something positive or normal, kind of.
I appreciate most your comments on chemo. I'm sure I shouldn't be too worried... in my life I have suffered many of those symptoms for other things... and survived. I thought maybe if I imagined myself pregnant, that would help... LOL
I am so sorry to hear your struggles to keep those nasty cells down in so many parts of your body. Especially concerned about the eye ones mutherflush... hope they get to that quickly and stop it dead in its tracks. I'm thinking of all of you and just hoping you get some peace and tranquility on this trip.
One question... planning to stay at my daughters for a while with grandkids, girls 9 and 5... will I be up to it, do you think, being on chemo?
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Trying to catch up after a few days...I've been reading, but too tired at end of day to write.
Cathy - so sorry to hear about the loss of your brother. Sending prayers for peace for you and your family. Also praying for relief from your back and rib pain, hope it is a se instead of a symptom.
Kcoralee - great news on your biopsy! Woohoo!
Woodylb - Cathy is right, we rely on you for you knowledge and support, but mot of all for your loving spirit that comforts us all! Congrats, too on your last taxol!!!!!!!!
Motherflush - I know that there was someone posting on here at one point that had eye mets...I will try looking back a couple of months to see if I can find the name for you. Please let us know how you are doing.
Penny - Yay! Chemo for you!!! Who would have ever thought any of us would be cheering for gettting chemo??! lol! Praying the the Lord continues to hold you up!
springwatch - Yahoo on being able to drive!!! I hate when that freedom is taken away even for a few days. Sorry about your freezer...never a dull moment, huh?
I know I've missed lots of you, ladies, and I apologize. But, here's to a great weekend for all of us!!!
Debbie
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Thanks, Chichimaine. Hope your energy improves. I'm already evening very tired. Can't imagine how it will be on chemo. Not worried though, thanks to the support of all of you. Love, Coralee
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Kcoralee - you will do fine!!! Rest whenever possible, drink lots of water and most, important...spend time and laugh with friends and family!!! Makes a big difference!
Mutherflush - I found someone on All About Xeloda who has eye mets. SusaninSF. You can check out her posts on that board or send her a private message. Hope i'ts helpful!
Debbie
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thinking of you all...have hardly been able to catch up...too much going on, but good family stuff. I will read tonight after wedding reception. Love & prayers.
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Hi, I usually don't post , But was wondering if anyone has had experience with taxotere, I think it is called, i will be starting next week I am afraid after flunking Ibrance/femera. Why do I feel like a failure when a treatment quits or does not work.
Would appreciate anything you can share about Taxotere, side affects, and how you felt on it.
Thanks Redroan
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three years ago I was diagnosed with er+pr+ breast ca had chemo radiation and bil mastectomy. A year and half ago liver mets. Two spots surgically removed and the other livers ablation. Have been on faslodex ever since. With normal pet scans. Tumor markers have been raising but still normal pet scan and mri's. Thank you Jesus. Anyone else ever had high tumor markers with no evidence of cancer radiograpicly.
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chichimaine, thanks so much for the encouragement. I get nervous about most things for a day or so and then adapt. I'm sure I will with this too. They just did surgery on me yesterday... put in a port and took out a sentinel node to have a base idea about my lymphnodes before the chemo, since I am doing chem before breast surgery. It is a backward approach but sounds like in my case... with possible liver met it's a great way to go. the lymphnode surgery was last minute, but I'm glad they thought to do it. My doc had to push a lot of people to make it happen at the last minute, but he succeeded. I'm very appreciative. I have a friend going with me to my first chemo and although I didn't think I needed it, now I know I'll be grateful. It's supposed to be at least 6 hours. Anyway, it's all coming together, which I'm very thankful for. We'll see how this goes.
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Chichi,
I hope you feel less tired soon. Chemo will do that for all of us. Get som rest when you need to it will give more energy, don't try to do many thinks and push youself when you are tired. Thank you for your kind words. You are all like family to me. So whatever i write comes out of love. Wishing you all a nice weekend and brand new week full of energy and positive thoughts. Xoxoxox
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Kcoralee,
Wishing you a speedy recovery and god results from your nodes and good luck on your chemo. God be with you
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Redroan,
I had taxotere and i think many of here did. It is a strong chemo , but very effective on cancer cells. Hopefully it will work for you. It is not very different from others , it is cumulative, hair loss, water retention, weight gain and or/ weight loss, but most of the time people gain some weight, peripheral neuropathy, you may feel some tingling in the toes and fingers, nausea, feeling tired. But please remember each person reacts differently , s side effects may vary fron one person to another. For me it was ok until the last few cycles. I got tired and put on a lot of weight. But my doctor from the begining told me not to worry about the weight , that i will lose it once the treatment is over.
He preferred weight gain rather than loss. Keep you strength, and rest when needed. Good luck to you.
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Pop3,
I hope your scans continue to show nothing. Scans do not always pick up progressions simply because the cells are too small to show. Tumor markers rise for many reasons it could mean progression and sometimes not. It depends if yours are dependable. Mine are not an indocation. It is your onc job to worry about this not you, if he has doubts he should check further.mit could be the meds . I hope it is just a reaction to fasldex. May God bless you and be with you.
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Redroan- I also did Taxotere . It was easier than FEC by far. However I was one of the rather rare ones who got bone pain as a s/e. Hate to scare you but being honest, just keep in mind it is NOT the norm. It is quite normal though to have a slight tin taste (like a tin can) when you eat or drink. I took my meds for s/e (forget them all now) but it didn't make sick like some did. Good luck with it!Cathy
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Thanks so much.
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Woodylb and Cathy, Thanks for the information. I always get anxious when starting new chemo as my first was Adriamyacin and I was so sick for a the first week. I was ready to quit after that. But they gave me better meds and it was better,
How soon did you loose your hair? I know that is pretty vane but I like having my hair back and really don't want to loose it again. But I will to beat the beast down for a bit.
Its good to hear something fairly positive, I have had a poor me weekend! I try not to do that but we have had a bit of bad luck lately and when it rains it pours. Then tumor markers were elevated and change chemo and then basement flooded and was still trying to get over the last few weeks. We had electrical damage from a tornado that went through town, (we were lucky it didn't hit us) Then faucet broke in the bathroom, Truck has issues , I was just feeling a little frustrated, Sorry don't mean to vent so much.
Thanks again. I have lab in the am and will see when I start.
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Redroan,
The first time on Docetaxel and Adrimaycin/cytoxin i lost fairly soon after i startedin a 10days time. On carboplatin gradually. Now on taxol which is a taxotere it went gradually but till now i still have some of it , it has mainly thinned a lot but not lost totally. I do not know if it has to do with fact that i am getting herceptin/perjeta along with it. I know it is a good feeling to lose your hair uear in and year out. But if it works on the cancer then it is worth it.
I am so sorry for your bad luck this past week and the worst of them is the TM rising. The rest well you know there are always days in a year where you feel everything goes wrong at the same time. I think it is a cycle in one's life. We all were in the same situation one time or another. It sure does not help when your health is at stake but try not to let it effect your state of mind. For you to go yet through another treatment will take its tall on you and you need to preserve energy and a strong state of mind.
I hope things will look up from now on and you get into a routine in which you can manage your time and your life.
I want to wish you a smooth sail for the chemo, hoping it will bring your TMs down and kill the beast. If you are having a blood test, i assume you will be soon starting. With God's speed and a healing touch.
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Met with oncologist today. MRI of liver tomorrow to confirm new met or not. CT last week was inconclusive. Good news is my heart has recovered enough that all Perception/perjecta/taxotere, TDMI meds are back in play if I need them. Will see her on Thursday if the MRI results are bad.I am trying to stay optimistic.
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Leftfoot,
The results may come back inconclusive again, the same thing happened to me about the bones , they were mets but inactive. I hope your results are what you hope for. Good news though about your heart, yayyy. The options which amy open are not bad. I hope you won't need them . God be with you. Keep us updated.
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Hope you get nothing but good news. Glad about the heart.
I have my first chemo, Wednesday, I'm both scared and cant wait. I really need to get started... NOW... They put in the port Friday and took out the sentinel node at the same time... I'm a little bummed out, probably from being under, don't know, but cry easily, which I wasn't doing before. They did find 2 encapsulated cancer cells in the node, but hadn't taken any others out, so don't know how far they went. I'm trying really hard to be upbeat, but am finally showing a bit of emotion.
Maybe I'll be better tomorrow, but certainly, in spite of my fear of chemo, I'll certainly be better to have started finally... It's been a month since diagnosis and for a grade 3 I think that is long enough, don't you? Love and courage to all of you, fellow travellers.
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Start taxotere on Thursday, Have to travel 2 hours for first treatment as local hospital won't administer first dose, After this one I can have it at home town. So that will be great. I am hopeful this works and side effects are minimal.
Thanks for all your info and well wishes. I am trying to get out of my funk and looking up!
Redroan
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Redroan... good luck on starting your treatments of taxotere. HOpe it goes well for you and does the job. I begin the same thing on Wed. Here are my other drugs.. perjeta, herceptin, carboplatin. I will have these 1x every 3 weeks for 6x. Then perjecta will continue for a year. I have no clue of course, about any of them, except I've been led to expect that none of it will be much fun... LOL Actually, they've given me material to read on each of them. And it all sounds the same to me... They are treating me before and after and during (3 days) with dexamethasone for nausea I think and have given me 2 other drugs to take for nausea.
My treatment ... starting with chemo, instead of surgery, is called neoadjuvent and they say is having some success. I hope they are right. Any feedback is welcome. Thanks.
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I just got my scan results from my first-line treatment after my fourth dose of taxotere/carboplatin/herceptin/perjeta and they saw a 75% reduction in the lesion on my liver (the only sign of cancer now left). I know I should be happy with that result but it means I'll have to keep going on chemo until it's gone and the chemo is really wearing me down. Did anyone else have a similar first-line result? Do you just keep going until it's gone or stays stable? And then what? My doctor doesn't recommend any local treatment of the liver but I'm pushing for radiation or a liver resection. It's just hard to keep going on the chemo with no definitive end to it.
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kcoralee, I am glad to hear from someone starting at about the same time as I am. I am only gonna be on the taxotere I beleive along with the 3 days of Dex and nausea meds and neupagen I think the day after. I hope we both do well with good results and limited side affects.
I have been reading too about the taxatere, but sometime feel I am overwhelmed and consumed with it. I try not to obsess about it to much .
Hope we can keep in touch.
Redroan
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Josalive,
Wonderful results for four months only . You should be thrilled. However, i am a bit confused why was carboplatin added to the regimen. The regimen is usually only taxotere /herceptin/perjeta. Every 21 days for six months or reduced weekly taxol with every 21 days herceptin perjeta. Some people continue for a year. This regimen is very doable and not so bad and the quality of life is good. I did carboplatin before this one , it wore me down completely because of the effects it has on the red blood cells and general fatigue. It wore me down with very little effect , only 20% shrinkage on the liver.
Taxol/herceptin/ perjeta after three months gave me complete response. And my second scan just before i stopped taxol gave me no evidence of active disease. My last taxol was last week . Now i will start tamoxifen along with herceptin /perjeta wvery three weeks, and see what happens.
If you are ER- your doctor may continue this regimen for a year or stopit due to toxicity. But to my knowledge carboplatin cannot be given for more than8 cycles max. You could ask him to drop it completely and continue till the end of six months with taxol/herceptin perjeta and see what happens.
As for invasive procedures i happen to agree with your doctor. Liver mets are very rarely candidate for such procedures. While a procedure may make a tumor disappear amd you feel well for a while another one will pop out , plus the procedures tire the liver eventually. So think about it carfeully before you push for it more.
Stage four has no time table you are always on medicarions and it depends on progressions. Taxol/herceptin/perjeta has the longest progression free periods in the history of Her2+ cancers when the body responds to it.
I understand how run down you are but i am fairly sure it is the carboplatin side effects not the rest.
Meanwhile, if you continue to six months , i hope you get complete response , this way they can give some rest from chemo for a while.
I am very happy for your results and i hope it reduces to nil. God be with you and guide you to make the right decision.
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Redroan ans Kcoralee,
Good Luck of your taxotere regimen , i hope it will be easy on you and tough on the cancer cheer up, it is not so bad.
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Josalive, I did Taxotere + H+P for 6 rounds last year and then H+P indefinitely. With each chemo my extensive liver tumors shrank and markers went down. By the end of 4 they were about where yours is and by the end of 6 Taxotere infusions my tumor markers were way down in the normal range and liver mets were small and blackish (dying). Sure enough 2 mos later PET scans showed no activity--NED!!!.
Before the end I asked about more chemo but then got the quality of life and robust immune system speech plus my tumor markers seemed to be a good indicator and my Onc really thinks 6 rounds of Taxotere plus the monoclonals is usually sufficient. The last 2 rounds of Taxotere kicked me hard. Took months to recover.
My onc is big on quality of life and not poisoning the patient unnecessarily. The research shows adding carboplatin doesn't improve results (Cleopatra study I believe). She does what she can according to the latest research and asks her patients to do what they can (eat right, stay active, reduce stress). I'm still NED and am just finishing a vaccine trial and keeping my fingers crossed for more time. I feel pretty good one year out from hard chemo (like being condemned to months of hard labor).
You may want to ask about stopping the carboplatin?
Hang in there, your tumor is responding appropriately it sound like (heeeeelp, I'm dying!!!)
Michele
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I haven't posted in quite awhile but today I have great news: AA combo seems to be working on the liver mets! Last scan in February showed improvement but on this last one there is significant necrosis to the tumors. My TMs though are still rising...onc says when tumors are attacked they get angry and cause markers to rise-anyone have this happen to them? She is all about the scans so I don't go back till September! Also, has anyone actually felt the liver doing something? I swear I can feel a pulling and tightening on my right side...onc gave me one of those looks...you know the look!
Please celebrate in spirit with me today-I pray all of us get to have some awesome happy news!
Cisco711
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Cisco,
Wonderful news! Fantastic, i am happy for you and for each one of us who gets any good news. This is good news.
I heard that when tumors die in some cases they cause the tumor markers to go up but i am not sure of the accuracy of it all. But i do know sometimes they do rise for other reasons then progression. In all cases believe if it was worrisome your onc would have investigated further. Mine rose 4 points after i got results on my scan of no evidence of active disease.
As for feeling something in the liver , i feel a bit of pain after each session , i also have discomfort on the right side upwards. But nothing shows on the PET.
Again congrats on the wonderful news, i am celebrating with you in spirit and prayers for us all.
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redroan... thanks for your quick response... Yes, let's stay in touch. My doc is throwing the kitchen sink at me, but I have a lot of confidence in him. Let's hope I can handle it. I just read Woodylb about the Carbo and will ask my doc about it... But I'll start with what he says and see what happens. The real trick will be whether or not the liver met receds. For me... if it does... that is not good news, because at this moment it is a possibility that it is not my BC and that will be the evidence that it is, if it responds. Ironic isn't it, to be hoping it doesn't reduce in size. Because if it is not BC it is either another cancer or nothing important. If it is another cancer, it can probably be removed. IT is the only one there. I'll let you know how it goes tomorrow. My friend is taking me and we are fortifying with books, food, blanket, socks, games, cards, etc. etc. Party time... Let me know how yours goes. Yes, I'm scared, but trying to make it tolerable.. I think it will be. Sorry you have to go so far for yours. Hope it works like magic. Remember, every day, every year, they develop more magic for us. And those of our sisters who have made it through 10 and 12 years didn't have anywhere near as many options as we have, starting later. But I guess you started a while ago didn't you. Still... remember... they are still really working on a cure. That's for us too... Love to you.
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To anyone who has experience with lymph nodes: They did take out the sentinel node Friday and there were two small encapsulated cancer cells... Anyone know what that means... Did it get away yet, or are they still thinking about going.... just a guess will do... won't hold you to it... LOL
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