How are people with liver mets doing?
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Well this has been enlightening. I must be breaking all sorts of rules. I have lymphatic massages quite frequently. If I don't , my left side gets all tight and doesn't function. Of course my lymphatic massage could be different than others. If I don't get that fuid moving I get so tight I can't lift my arm above my head and it limits my ablity to move it. I have never been told not to do it.
I have also never been told to not take tylenol or ibruprofin. I find it interesting that you have each been told the opposite thing. Why did they tell you not to them? I also have continued to drink milk while on Xeloda. Again, nothing I was told not to do by my doctors, just something I have read here in the forums.
I think that even docotrs don't know what to do with stabe 4 disease and so that is why there are different opinions and directions on this forum. I might have to reevaluate. I see my onc next week so will have to ask about a few of these things.
I am thankful for everyone out there on this thread who shares their inforation and experiences. It allows me to make better choices for myself. Never too late to change things for the better.
Apackoftwo- to answer your Xeloda question, my tumor markers go up and down every cycle. Somtimes it is out of the normal range and then it will go back down. I wouldn't be too concerned unless there is a drastic change in your numbers or the trend continues upward. I have finally gotten to the point where I don't freak out when my markers go up unless it continues for more than two blood draws. This has only really happened twice to me. Al lthe other times , the markers have decreased to within normals limits. So I would keep track but not worry about it unless you see a drastic or continual upward swing in the numbers.
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Good morning Penny,
I hope you are doing OK this morning and feeling comfortable. I think of you often and continue to pray that your new chemo is working.
Love, spring
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Regarding lymphatic massage, I don't see why you shouldn't have it, if it is giving you relief. Cancer cells can spread through the lymph and vascular systems. We all know that we find cancer in lymph nodes and the blood. The interest in liquid biopsy and circulating tumor cells would not have come about if the cancer cells were not present in the latter.
I can understand the concerns of some who feel that pushing around the lymph fluid during massage may be causing the cancer to spread. However, the lymph and blood are not static systems, They are constantly moving around our bodies no matter what.
I wouldn't have lymphatic massage to a leg or arm where there is active cancer. Not because of the risk of spread but because of the inflammation in the area from the cancer could be made worse by the treatment.
Just my point of view.
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I have lymphatic massage all the time and I agree with spring watch. My understanding is that the lymph fluid drains into the urine and is flushed out, so I see it as a benefit. If there are cancer cells in my lymph nodes, they possibly could be flushed out of my body when I am getting the massage. My lymphadema therapist told me that vigorous exercise does the same thing, gets the lymph fluid moving.
I have been Ned for over 4 years now, but got them when I had active liver mets and continue to get them
Laurie0 -
Penny, sending you love & prayers. Thinking of you all the time.
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I take a fair amount of hydrocodone/tylenol prescribed by my oncologist. I've questioned him about the tylenol and he says at the level I use it, it is fine. I never take over 5/325 mg. of tylenol 2 x day. If my pain requires more than that, I use morphine. He also recommends Aleve instead of Ibuprophen for inflammation. Of course though, all of our situations are different and I'm sure recommendations have a lot to do with our liver function lab results.
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Penny, you continue to be in my prayers.
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Interesting perspective that some doctors recommend avoiding Tylenol and Advil. My doctor hasn't prohibited anything. After my C-Section (a week after diagnosis), I took horse pill, prescription ibuprofen for a month, partially for the surgery recovery but primarily for severe bone pain. I preferred ibuprofen to the narcotics. Now that the bone pain is almost gone, I rarely take anything. I use heating pads and rest first when possible.
I am curious, how many of you avoid alcohol completely or have your doctors recommended it? I don't drink much and have scaled back on the minimal amount I do drink even further since diagnosis but will enjoy a glass of wine with dinner here and there.
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Sarah...are you saying you take (5) 325 mg Tylenol tabs 2 x day? I've luckily never had to take much of anything for pain, but before mets, Tylenol was my preference. It wasn't until liver mets that my onc said only ibuprophen or Aleve...and she was very firm about it. She was also firm about no alcohol. I don't care for it anyway (except for a Baileys at Christmas, which she said I could have after my first stable scan...but I didn't), so that hasn't bothered me at all...except for wine at mass...which I've only had 3 times since dx. I just figure if I can have control over anything in this journey...I'm taking it. True...there are so many different attitudes/opinions/interpretations, etc, when it comes to this disease. If I hadn't had to see a new onc, due to former onc's health issues, I'd still be on chemo. Seven months later, I'm so relieved...but every now & then, I'm nervous. So goes the practice of medicine.
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I didn't ask my dr about alcohol, but I quit drinking after I was diagnosed with liver mets. It's been almost 5 years and at first it was hard, but now don't miss it.. I also quit drinking soda and that was much harder for me than the alcohol.0
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My liver mets were pretty extensive from the start, when I was diagnosed in June 2014. I've got plenty of mets in my bones and lungs as well. I went through a reform period last summer, where I swore off all risky food, including alcohol (not a food, I suppose!). But eventually, I tried a glass here and there... and then experimented some more, watching the constant liver scans and liver enzymes for a correlation. For me there was no correlation between drinking and liver function or disease progression.
I've had a great year and have been feeling good pretty much the entire time -- but I'm working 1/2 time. My liver mets didn't respond much to Fulvestrant, Femara or Affinitor and I finally went on to Taxol this February. Taxol is working! My liver mets have declined dramatically and my liver enzymes are perfect.
And I've been drinking like a non-cancer me. So go figure.
My oncologist can't recommend drinking, of course. Who can? But she knows I drink sometimes and she is clear about when she needs me to stop so we can check our a glitch in enzyme results.
Even Taxol has been pretty easy to live with. I've found the biggest factor in my live with all of these treatments is how much I exercise, not how much I drink.
Suzy
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Confused about how to get around on this site, but here goes:
Hi, I am a real newbie... diagnosed with BC about 2 weeks ago... surgery was set for May 22, but now is cancelled due to a PET scan that shows a tumor in my liver also. They want to start me right away with chemo... I will go shortly for a liver biopsy to determine what kind I need. My BC is grade 3, HER2 + I know nothing about anything... a new journey for me. I was pretty bummed out this morning when they told me about the changes and my liver, but now I am ready to go and you all give me great encouragement. I'm already crocheting a hat for after I start. I do fear the nausea. Not sure how I will do with that. Don't know yet what they will prescribe for me. I'm in FL right now and want to go home to NYS for the summer... not sure how that will work with the chemo. I like my doctors here but have a chance to go to Sloane Kettering... Is it a good idea to go to a big well known place for a second opinion, or just to go forward as is. I will stay here in FL until I get a complete plan in place. (I like plans, but looks like it's hard with this... things change from day to day.)
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Thinking about you, Penny...please let us know how you are doing whenever you can. We're all here for you and praying for you! Miss your daily words of wisdom....
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My doc has no problem with my taking ibuprofen if necessary, but I don't have much pain. Mostly headaches from the Letrozole, but I only take it occasionally.
I stopped drinking alcohol after my liver mets popped up, too. Doctor never said anything one way or the other and I have no real knowledge that it makes a difference. I just feel that doing what I can to protect my liver and keep it healthy is important, and abstaining certainly can't hurt.
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kcoralee - I'm so sorry about your recent diagnosis. I hope you find these boards as helpful as I have in understanding this new world. I think I'm just about 3 months ahead of you as I was recently diagnosed stage IV with one met to my liver and am her2+. I am now through my 4th cycle of Taxotere, Carboplatin, Herceptin and Perjeta that I do every three weeks. I will be getting my first scan since I started chemo next week to see how it's working. If my cancer is responding nicely I will drop the chemo at 6 treatments and continue on with herceptin and perjeta. I can no longer feel any sign of cancer in my breast so my fingers are crossed that it is working well. If not, I'm not sure how much of that treatment I will be able to handle as it's starting to really wear on me. The worst side effects I've had is fatigue and low blood cell counts. Days 3-9 are the worst and then you rebound. To be honest, it's been easier than I thought it would be and it has gone by quicker than I thought as well. So good luck to you and I'd definitely suggest going to Sloan Kettering when you're in NY. I'm getting ready to head out to MD Anderson to get advice on surgery and liver treatment options. If you're like me, you'll have about a 10 day window between treatments that you'll be feeling well enough to travel. Good luck with everything and feel free to PM me if you have an questions!
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RonnieKay, sorry my message wasn't clear. I take hydrocodone 5mg with 325 mg. of tylenol in it 2 times a day. I'm so used to the abbreviation hydroco/apap 5/325 I didn't think about it not making sense to someone else.
When I was pretty sick right after my liver mets diagnosis, I way telling my doctor that I had totally lost all taste for any type of alcohol. I didn't even want a nice glass of wine with dinner. He told me he hoped to have me back enjoying an occasional glass of wine with dinner quickly. He was successful
I love good craft beer so I have maybe a couple a week if I am out and about or a glass of wine with dinner a couple of times a week. I know it puts additional stress on my liver but I'm not giving up everything I enjoy.0 -
praying for you penny. Hope things are stable and you are doing better. I just started Lxempra for liver mets. It's a good chemo I think.
I pulled back from drinking wine to protect my liver however I think an occasional glass of wine probably won't hurt. Haven't discussed with onc. The Lxempra makes me feel sick for 10-13 days after infusion and basically don't feel like eating let alone wine.
My Fish test came back negative. Still have biopsy samples sent to Foundation One for genotyping. My onc says "for later " I guess if I run through other tx. Who knows. There is also a lesion on dura in my brain but they think beign. Having another scan next week to look at it again. I tell you if it isn't one thing it's another.
Leaving June 1 for nephs graduation in Minnespolis. Can't wait. So there is light at the end of the tunnel.
Neph is just starting his life ; I pray I (we) can continue life too. 0 -
I haven't been keeping up with this topic very well and I want to reply to everyone, but I think I'll just have to try and pick up from here. Thank you woody and others for your responses and welcome. Woody said " when your worst fear becomes a reality" and that's just how it feels. But I am still here.
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Apackoftwo, I can relate to what you said about usually being a research queen but feeling tuckered out. It can be time-consuming and mentally exhausting. It's not just mastering a new body of knowledge, but there's that feeling that your life is on the line. With my first diagnosis I was constantly on the internet reading the NCCN guidelines for physicians, and articles in medical journals, getting my "honorary degree" in oncology. I realized at some point that one of the reasons I did that was that I didn't fully trust that my onc had enough knowledge, experience, and interest in my case, especially since I had premenopausal ILC. He would follow the standard of care, but was not interested in discussing the questions that my research brought up. And when there were important choices to be made, he would say it was up to me! So I found a new oncologist at a better place. When I had the recurrence, I decided that this time I wanted to spend more time and mental energy on my family, and less on research. Also, the thing I was so afraid of had just happened, so what good was all that research since I hadn't listened to my own advice? So, oddly, I both trust myself more to apply what I learn now, and relax and trust my onc more to look out for me. I still learn about treatments and follow the conference news (can't help it!), and listen to my body and intuition, but I do not carry such a burden because I believe my new onc knows more than I do, and she welcomes my thoughts and questions. Does that make sense?
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I went in today for Navelbine but my neutrophils were too low again.It seems that I've been following a pattern of 2 weeks on, 1 week off even though it's supposed to be every week. I had 1 Neupogen shot last week so we're trying 2 this week.
There is good news - my TMs continue to go down. CA 15-3 is 344.4 (was 452.3 last month) and CEA is 9.4 (was 10). PET scan will be in June so we'll see what's really happening.
Leah
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Leah s-
I hope great things for you. Your numbers are promising. I can't remember if you have had neupogen before. If you have heard this then I apologize for the repeat. But neupogen can cause a lot of bone pain and taking a Claritin can help with that. Just thougth i would put that out there.
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Leah,
When my neutropils were too low i took three neupogen in row to bring them up effectively. Like leftfoot said claritin helps. You do get some bone pain for few days then it is back to normal. But neupogen does help in keeping your schedule.m
Your TMs look promising oI hope they continue to drop until the tumors disapear. Be well .
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Leah, Yay for the tumor markers going down!
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Thanks, everyone. I've had Neupogen before and I take the Claritin. It usually helps - unless I also have Zometa in which case it's achy bones. Fortunately, Zometa is only every 8 weeks.
Leah
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Sandilee...I'm on track with you, doing whatever I can do to keep my liver happy, and I know my family would have my head if I wasn't doing all in my power to take the best care possible. It's possible it won't make a difference...but I'm not good at regrets!
Sarah...glad for your explanation of meds...I thought I might have to do a Tylenol intervention...LOL!
Diana...excited that your trip is close! Praying the spot on the dura shows benign, just as they think! I'm a bit saddened by the negative Fish...which sounds corny...I'm in this mess thanks to her2! But...it does provide some drus w/extra punch.
Shetland...it makes total sense. Proud of you for trusting yourself & poring yourself into what's most important!
Leah..joy, joy, joy....TM's going down!!! I think Navelbine does a # on everyone's white count. After the third time I was going to miss chemo, my onc gave me neupigen, 3 like Woody, to get on track, then I started getting neulasta after every 2nd tx (I was on weekly tx). After 6 mos, I officially went to 2 weeks on, 1 off...the neulasta given after 2nd chemo (and then my week off). Never missed another chemo. I went to that regimen cause I felt like crap and that's what SueOpp was doing (love my bc sisters) so asked onc & she approved it...it was magical for me! Good luck & may it bring you healing!!!
Kcoralee...my heart is aching for you...but it sounds like you're full steam ahead...and I applaud you! Good luck on your biopsy...you may follow Josalive in tx. Josalive...I had your same tx in '09, w/out perjeta, of course. I was stage 2, grade 3. At that time, when chemo was over, herceptin went for a year & then AI only. On my 3rd (mets) dx, my onc said she knew I should've stayed on herceptin, with first recurrence, but it wasn't protocol for stage 2. I detest stage 4...but w/her2+ ...now h/p are protocol so, hopeful it keeps working! I felt pretty good on Josalive's same tx..fatigue, but.no nausea, a little indigestion, but watched what I ate closely. Day 3-5 were slow days for me, but I took care of a 1 yr old grandson & we napped together & did library, parks, etc, and I never missed a day with him. My onc called me a poster child for chemo...little did we know then, it'd be my drug of choice for 22 months, 3.5 years later. Sorry for the blabbing. In the car on a 4 hr drive. I'm holding you all hostage!!! Thinking of you all...have a lovely weekend.
Penny...you're in my thoughts, prayers & heart always. XOXO
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Hi All,
I haven't been around for a while so I have a lot of reading job to do :-)
Penny, I just read your post. Hang in there darling. My heart and prayers are with you.
Just a little update on me. Markers are up.....again - now 600+. No changes in the liver - so the decease is stable there. As Pet/CT is not reliable for me we are going to make SPECT/CT. I'm not sure what the difference is. Today will try to meet the doc who is in charge of this. I don't know what to pray for :-( Obviously there is progression somewhere. And why Navelbin is working for the liver mets - keep them stable and isn't working for other cancer - wherever it is. WHTF?!? Feel so tired of all this stupid cancer game.
Christina0 -
Leah, the trend of markers is good - smile and keep going.
Woody - kisses for you my darling. Sorry for my disappearing. I needed a break.
Diana, so sorry to see you here but welcome, The girls here are amazing.
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Kiss77, I wonder if they should use MRI since you have ILC.
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Shetland, my onc wants to check the whole body. I'm not sure if I can make MRI of the whole body but if it's possible I can discuss that with her.
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Kcoralee,
I am sorry you are here on his thread but glad you found us. It is quiet a spectacular group here , very helpful and kind.
I know how scary it is to find yourself in stage IV and with liver mets, but thank God for all the treatments available. Sloan keatering is the place to be for this and i hope you get a good advice and a good oncologist.mit is very important to chose one who makes you feel comfortable and whom you trust.
If you liver mets are Her2+ my guess is that they will start you with the latest and most succeful combo to date. Which is taxotere/herceptin/perjeta this is if your liver mets are still the same as your original cancer.
I am getting this combo since november and the first scan showed complete response, and a week ago the second Pet scan showed the same . I will be stopping chemo this week and staying woth herceptin , perjeta and will add tamoxifen.
So you see no one can tell , and i wish for you the same results hang in there and keep us posted.
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