How are people with liver mets doing?
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Louis, praying it is dehydration. It makes sense she doesn't feel well if her temp is 102. Some medical professional have no bedside manner and overgeneralize everyone. It drives me nuts and can feel super insulting to feel as if you are just a number to them and already written off.
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Louis - I prayed for KD and am very very sad for what she is going through. I am praying it is just dehydration. I am praying that she recovers soon. My thoughts are with you. How are the kids doing ?
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Louis praying for you and KD. Contact your MO for his input. I too don't like this onc on call.
Babs
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Louis, I think momall has some good ideas on how to reach out to KD's regular oncologist who knows her. I will add, can you text, call, or email him directly? I know my onc read and responded to an email of mine while at a conference. If he could just get in touch with the hospital staff and give orders.
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yes, talk about insensitive!! What a subhuman. If only we could put them in our shoes for a day. Praying for good news quickly Louise and KD...
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Photogirl, welcome to the thread. Of course we are worried about KD and Louis, but I wanted to let you know are not forgotten as you process the news of your scan. It is a scary diagnosis, but it is not the end. I was diagnosed with lots of liver mets almost three years ago, have been doing well since then, and plan to do well for a long time to come. Your rise in liver enzymes could very well be the Xeloda. Take some deep breaths and give it some time to work. Hug.
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Louis, you and KD have all my prayers. I hope you get good information soon.
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Louis, I am continuing to pray for you and your wife. As others have suggested, it is important to get the right person in charge of care right now. In addition to an oncologist, it might not be a bad idea to pull in an Internal Medicine doc to coordinate care until the problem has definitively been diagnosed. If there is an infection involved, then it is important to pull in an Infectious Disease specialist, especially since this is happening so soon after sepsis. Dehydration can have a strong impact on people, particularly those who are still weak . I know what you are going through, and I know it is frightening.
Hugs and prayers from, Lynne
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Louise, I don't often post but wanted to send my thoughts and prayers to you and KD. Hugs.
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Hi FCVAGG: I also live life to the fullest. My husband and I take small weekend trips when we can and 1 big vacation a year. I spend as much time with my children and grandkids as I can. I have wonderful friends and family who pray for me. I still work full time and out of 3 chemo's I only missed 3 days of work. I'm pretty proud of that and also God has blessed me that it hasn't been to hard on me. I had BC in my left breast in Sept. of 07, Stage 1, er positive, idc, less than 1 inch big. Double mastectomy and In April of 2012 it appeared in my humerus bone and in September of 2012 it went to my Liver. 1 tumor. Did chemo and In remission for 1 year then the one tumor came back and did ablation but it only last 6 months and then I had 3 tumors. did chemo and I was good for 6 months and it came back then did another chemo and in the middle of that chemo I had a return on my left breast so I stopped chemo to do 35 rounds of radiation then went back to chemo and the chemo wasn't working so he put me on ibrance and femara in October of 2015 and I was doing good. In July of 2016 when I did pet scan I had 1 small tumor and when I did a pet scan in February I went from 1 to 10 to 12 small tumors and 1 tumor 3.97 inches big and a 2 inch tumor. So now I'm on ixempra every 3 weeks. If it doesn't work he said he might put me on Xeloda or a stronger chemo. The majority of the time I don't think about it. If God grants me another day I just deal with what that day brings me and I try not to worry. I'm a real positive person but this one thru me for a loop. I love to read these posts because it is very inspiring and helpful. It lets me see what other doctors are doing and it helps me to ask certain questions to my onc. So thank you ladies! I feel very blessed that it hasn't spread anywhere else in 5 years so when people ask me how I deal with it, I just tell them I look for the positive out of my situation and 1 day at a time. I wanted to go to Alaska last year and my husband wouldn't commit, I told him I have to do things while I'm feeling well and doing good because I never know what the next pet scan in six months will bring so we went to Alaska. It was the best trip ever. Live life to the fullest ladies and take it 1 day at a time and try not to dwell on things.
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Welcome, Photogirl. I am also on Xeloda for the last 14 months. It is known to be very effective for liver mets and many people take it for a long time (years). There are some on the Xeloda thread who have been on it for 4 and 5 years. And I hear stories of a woman who has been on it for 11 and still going strong. When I first started taking it, my liver enzymes and tumor markers went up for a few months and then went down after that. It is known to cause a "flare" when it first starts working.
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Louis - checking in to hear how things are going. Praying that you have the strength to deal with whatever is going on, good or bad.
I just had a good scan, but not a great week. Tired.
Read everything, thinking of everyone. Lifting you all in prayer.
I really am interested in hearing how everyone is doing ... couldn't possibly name you all anymore ... afraid of leaving someone out. But please post how you are doing, what is worrying you, what is going well.
>Z<
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zarovka - Fantastic news on your scans. Wishing you a looooong stable time to come on Ibrance.
I am very worried about Louis too. Being a caregiver myself I can relate with his situation very well.
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I am frustrated because my DH has had a health problem going on for a very long time, and it is taking a long time to figure it out and get help. I have to follow up everything constantly to try to keep things moving along. I want to tell the insurance company, office staff, and doctors, hey, we need to have some time together where we both feel good! Your delays are costing us precious weeks and months. Who knows how long I have to feel well? What if DH finally gets help and feels better, and then I go down? Feeling fine at the moment but living under a question mark. Worried because my TMs are still going up. Knowing my next treatments could be harder.
Hoping to hear from Louis soon. Zarovka, news of your good scan does us all good. Rest up after your tween adventures. Buras, I'm glad you and your husband took that Alaska trip. Carpe diem.
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Thank you Z and Letmywifelive. This is all new to me but the blood work scared me. Maybe after a few rounds things will level out. How is your wife doing on Zoleda? I have not felt too bad so far just scared to death!!
Your right Z, now more blood work probably more scans etc but I guess if this is what it takes to hang on then we just do it.
Hugs to Everyone!! I feel so good when I talk to all of you and read what you have to say. I wish I had some advise to help you but I'm new in the game.
Have a great weekend.
Anita aka Photogirl
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Yay for great scans, Z!
Shetland, it is amazing to me what we are dealt all at once. Why should it ever be that a couple would face health difficulties at the same time? Praying that you both find a long stretch of feeling well to fully enjoy life together...and for us all strength to deal with the looming question marks.
To Anita, hello! I've no experience with Xeloda but have all faith in the responses you've gotten so far. Sounds like flare is a very likely answer and you may be on your way to a long, effective treatment.
Louis, I have not stopped thinking of you and KD. Just wanted you to know.
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Thank you Kaayborg. I need some faith in this drug. Ibrance didn't work so this is the next line. I'll keep you posted.
Thank you,
Anita "aka" PHOTOGIRL
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Anitra - my wife is doing well on Xeloda but with some manageable side effects (blackening of palm if hand and under feet, bad taste in mouth and mild on and off nauseas). Last set of scans done end of March showed stable disease. Next scans scheduled for June 6th.
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Letmywifelive,
Thank you for that information. I was told that the hands and feet are affected. I work in greenhouses with my family business and they told me no trauma to the hand and feet so no raking no pulling hoses and to wear cotton socks no treadmill no long walks and no dirt. That leaves me working with all automated equipment. That's ok. My MO from Dana Farber explained that Xeloda does something to the connective tissues in your hand and feet. I'm so happy your wife is stable that is amazing!! Keep me posted and I'll do the same to you and your wife. I found taking one anti nausea pill at night takes that bad feeling away all day. Thank you again.
Hugs.
Anita "aka" PHOTOGIRL
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Thanks to all for prayers and concerns.
My Princess still has a LOT of fight in her. Unfortunately, we don't know how much fight her liver has in it. We had an honest, frank talk with another MO from our clinic about an hour ago.
He said that while KDs liver is not "actively failing", they cannot say for certain how much more it can handle. He said that he could not say right now whether her liver could handle any further cancer treatment. Only time will tell.
They are doing everything they can right now to help the liver get back to better function. He said we will know in a few days if we are at the point to consider further treatment or hospice options.
Right now, KDs mental function is just fine. However, she continues to be at a high risk for dehydration which causes her to become extremely confused and disoriented.
We will be meeting with her MO early Monday morning. This is an opportunity for us to put in practice my signature quote below. Fortunately, her MO is the most positive doctor you would ever meet. If there is hope, he will certainly proceed forward "full steam ahead". If there is none, we fully trust him if he says so.
So, now we wait another 42 hours or so to meet with him.
Know that we pray for all the ladies on BCO daily, and I especially pray for a number of you individually that I have come to know on the liver mets and bone mets pages.
Loving kindness to all,
Louis
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Louis, I haven't officially joined this thread (perhaps this post is my official entry) but I know you and have followed your wife's condition from the Bone Mets thread. I'm so sorry for what you are going through and hope that KD's strength and courage get her through this tough time. Our bodies are amazing and are capable of incredible turnarounds. You are a wonderful husband and your love for your wife is what every wife hopes to have. We are all behind you and KD and sending prayers and positive vibes to you both.
Cathy
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Louis - the liver has a remarkable capacity for regeneration.
>Z<
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Z, I was just going to type that same thing to Louis. From what I understand as well, the body can have onlya small bit of liver function and still do okay.
Shetland, I feel your frustration in my heart. Understandably, I think you are having a stress reaction to those damned tumor markers. We live our lives with a lot of "why me?!" moments. This can be one of yours. I fear this uneasiness has jeopardized your dance competition. I'm so sorry if that is the case. I hope it is not. I wish I could say something to help, but I think you are going to feel what you are feeling, until your mind can be put at ease. The not knowing is the worst.
I hope that Xeloda, which I finally start tomorrow, will be my magic pill....but I'm also very afraid that it won't be.
Stefanie
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Stefanie - Xeloda is da bomb as far as killing cancer. Side effects not always difficult. I am expecting great results.
>Z<
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Louis- Winging prayers your way for you and KD!
C
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Louis, Thank you for checking in and giving us an update. I continue to lift you and KD up in prayer. Maybe a break from treatment will give KD's liver time to recover and then she will be ready to resume treatment. I know she is getting good care from the medical team and wonderful support and love from you. Let God's arms surround you in His loving embrace and give you the strength you both need.
Hugs from, Lynne
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Lynne, what a good way to frame this long weekend wait for KDs oncologist -- time for her liver to recover more. I'm glad you got to talk to a different MO, Louis, since the other one left you doubtful. We are waiting with you.
Advice not required, Photogirl. Everyone, whether newbie or veteran, can contribute in their own way, and we pass it on. You are very welcome here!
Stefanie, I think you are right that I am not really as calm as I appear, even to myself. Wondering if I will ultimately cause a problem for my fellow dancers just adds to the stress; and yet, I refuse to let unknowns make me back away from living my life as fully as I can. We do often have both have fear and hope, at the same time. I have to believe for you that Xeloda will be a very unpleasant surprise to those stupid cancer cells.
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Louis I cannot imagine how you are feeling now. To see your princess like this. You must be so drained. How are the kids? What did you tell them? Answer only when you can, like 2AM or so. Take good care, we are all hoping for things to turn. Anticipation it is!
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Photogirl - Sharing your experience, with some specificity, is helpful for everyone.
Shetland - None of us are as calm as we appear. As you say, we face each day with equal parts fear and hope. Please dance. You are doing a great job setting realistic expectations and goals. Go for it.
>Z<
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It's so upsetting to hear KD is not feeling so well. What would be showing on the BT that they think her liver is not up to par. I could put myself in his place.I think about it all the time, with no abating of the lesions on the scans for Dani, and then to see how quickly things could turn , it's very spooky.
So far D's TM's have been inching up also, maybe I'll be able to see some of the BT's results by tom, they are very slow in entering the stuff in the portal which is very frustrating. And the TM's only come in a few days.
Shetland so sorry you have to go through this. It's absolutely not fair. Let's hope they could soon figure out exactly what's wrong so you could have a plan.
Zar well, you being tired is not funny. I cannot imagine it. Hope you could recharge soon enough. It's so true, just today I was thinking how in this situation you are all doing the mundane while dealing with the scanxiety and numbers all of the time. I tell you from the sidelines, to those that are close to the people they care, I can't help to think how on earth was I able to be nice today when I know that today was not a good day for D…
Buras good for you. What a great trip that must have been.
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