How are people with liver mets doing?
Comments
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kaayborg,
You are right no one should have to go through this horrid disease but much less young people. I am 57 and everytime i read about someone young getting this disease it just touches me deeply. I feel like a mother who just got the news about her own child. I truly hope you and MaryK and many others conquer this disease and get to live long and full lives.
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MaryK, so sorry that you find yourself here but you will get so much love and support on this site as well as information and knowledge as you fight your way through the maze and confusion that is MBC. It is so unfair that you are having to deal with this but you are young and strong with no age related problems that oldies have to deal with as well. I'm sure your docs will throw everything they can at your cancer and your young spirit will keep you fighting.
JFL, glad you made your flight with drugs onboard! Enjoy your trip0 -
JFL - I am so sorry to hear about your progression. I hope the Xeloda works well for you. I see many women on this board report good results on Xeloda. Have fun at the YSC conference - I am going to LBBC next month in Philly. I get treatment on Fridays this semester - if you are around I would love to touch base and have a coffee. I am going to talk to the doctor about the Stage IV exercise study and try to goose him into looking into it! I'll let him know that I am not the only one who might be interested.
I'm thinking of you. Keep us posted on your progress.
sj
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JFL, I'm sorry about your progression and mad at the insurance and pharmaceutical companies!!! These drugs are so expensive. I'm glad you have a few pills.
MaryK, I'm sorry you have to be here, too. I felt young when I was first diagnosed at 38. I feel young now at 42 being diagnosed with mets. My kids are 9 and 12 and I need to see them off to college!
I just saw my onc today. He said I only have the one tumor on my liver. He spoke to my previous onc from MD Anderson and they agreed that I need to have ovarian suppression shots (which I got today as a PILL injected into my tummy!), Femara and Ibrance. They think I should have a resection to remove the tumor since it's just one spot. So, I will fly to Houston and have surgery at MD Anderson. It's all very overwhelming.
Have a peaceful weekend, ladies...
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(((Luvmyfarm)))
Big decision, but oligometastic cancer (just one or a few tumors) and often be treated and brought to remission with surgery and/or targeted therapies.
With the back-up of anti-hormonal therapy and Ibrance, you're really covering your bases!
I'm glad you have a course of action you can pursue, even if it's overwhelming. Take a deep breath as you head into your next phase.
Others in with oligometastatic liver tumors may want to see this website:
http://www.beatlivertumors.org
warmest healing wishes from a wet, California farm, Stephanie
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I am feeling quite strong today reading comments from all ladies who are fighting with such strength and grace. A Mega THANK YOU for giving me HOPE and support. JFL i wish a never ending NED for you. A bucket full of LOVE for babs6287, woodylb, and kaayborg. since its a liver mets discussion, i have a question. i never had any symptoms from my liver mets though i have 3 out of 8 sections of my liver involved (i don't know about the lobes, ct says this) but now after getting two doses of carbo/taxol plus zometa my liver hurts. i have abdominal cramps and bloating as well. i am not sure if its from liver mets or carbo/taxol. any insights? anyone experienced this?
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Hi,
MaryK, I'm so glad you're feeling strong today. I am, too. Much better than yesterday. This is a roller coaster ride and everyone has ups and downs. Pain doesn't help. I hope your cramps and bloating are relieved soon.
Since I am new to this also, I have a question. After I have the liver resection, and they remove the tumor, will I be considered NED? Will I still have to take Ibrance?
Hugs to all
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Luvmyfam, thank you for your response. i have read somewhere that with a resection of solitary liver tumor, they do not do chemo if you have not had it metastasized to any other organ. but im not sure enough. BUT, i am really happy for you i have read many women had tumor resected from their liver and enjoying NED since then. i wish same for you
and yes you will still be taking hormone pills to cut the risk of it recurring again.
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MaryK and Luvmyfam
So glad you're both feeling stronger. With both my bone and liver mets I really dont have symptoms other than bloating every so often and the SEs from Xelida I've been lucky thus far. And yes this is one major roller coaster ride we'reall on!
Babs
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MaryK,
I am glad we could help. About the pain and bloating, it is mainly due to chemo. It must be effecting your cancer. Either way it is a good sign:). I hope it is killing all the cancer. The bloating also, chemo effects the colon. The carbo will cause water retention and taxol diahrrea. I hope your side effects are tolerable. Wishing you full success on this comb
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lovmyfam,
I wish good luck and hope for full recovery on your liver resection. There is domeone here on this thread who had a liver resction , she had only one tumor and she is doing well since few years back. They do not consider NED before at least six months, and if nothing else shows somewhere else. Normally very few metastatic patients are advised surgery. But some cases are elligible. I am glad you are oart of the latter. Good luck and keep us posted. Prayers are heading your way.
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I hear that the pain in the liver is from the treatment working. But oh boy does it make you worry. I am headed into my 3rd week on Ibrance and my liver and right rib and area below my liver are all hurting really bad. I also am nauseous with diarrhea.
During my last treatment(afinitor/Aromasin) the same thing happened and my 3 month scan was clear.
I know that the pain can be discouraging, and we all pray that the pain is from the treatment working and not from the cancer growing. It is so hard to wrap our heads around sometimes.
Today has been an especially hard day for me. I feel like crap and my whole right side hurts. Faslodex shots a few days ago and I'm almost done with my first round of Ibrance. 5 days and then I get a week off. Sure do hope this stuff is working because I'm so DONE with head games of having my liver hurt all the time.
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Re ports: I hate how my port looks, like a snake under my skin. But I so appreciate it every time I need a blood draw or an injection for a scan. My family says it is not as noticeable as I think it is. But I am very self-conscious about it and wear clothes that cover it. Isy, I was told that only a nurse with special VAD (venous access device) training is allowed to access the port, and that is why a phlebotomist is not allowed to do it. Is there a place you can go close to your home where there are trained VAD nurses? Also, I don't know how it works in Australia, but in my case, if any other doctor wants any blood tests, I ask my onc to add it to her order so the port will be used. Can you get your blood draws through the port on treatment days? I figure if I have to have this ugly port, I am not going to let them stick me in the arm! Quality of life.
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Shetland, it's probably the same here about the specially trained nurses only being allowed to access the ports and I get that. I'm sure I wouldn't want just anyone messing about with it! The hospital where I get chemo is the nearest place where I can get bloods drawn by one of these nurses and I do have the option of going there the day before chemo to do that. Getting it done on the day would mean adding an extra hour to an already tiring day, plus my onc wouldn't have the results when I see him. It's all about scheduling really. I'll se how I go, I do still have one good vein left!
Getting the snake/mouse fitted on Tuesday. Cant wait 😱😝0 -
MaryK/Sonya
My first few treatments I used to get stabbing pains in my liver. This turned into a dull ache and now I rarely feel anything, just the odd twinge every now and again. I'm sure it means the treatment is working and I hope it soon resolves for you both to
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I'm scared because I have been feeling more liver-area twinges recently. The only thing that has changed is I got an extra week off Ibrance when I had a cold virus. Am I grasping at straws to think that maybe my white blood cells were able to do some extra cleanup of dead cancer because of that, and that is why I am having these twinges again? I had the twinges while taxol was working, but not much in the past several months, until now.
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Shetland,
I was told by my nurse that the port is better be left only for infusions and not to be used for constant blood withdrawal except in emmergencies . Specially when you have a lobg tirm treatment. I stillave few veins so i use those for blood tests and PETS and so on. I use the port only for my infusions . It Seems to be working i have had it for two years with no hitch. I really don't want it to get to a point where they have to find another place install a new one. 0 -
Yikes, I never heard that, Woody. Do you know what the reason is for limiting the use? Is it because there is a risk of wearing out the port or your skin? But the manufacturer says the Bard Power Port has to be flushed every four weeks when not in use, and that is how often I have blood draws. Although my onc thinks eight weeks between flush/use would be fine. I agree, would not want to have another one installed in another location.
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I have never heard of that either and use my Bard Power Port for everything. I do not want to have to get another mouse for goodness sakes! Could it be a difference in the kind of port you have?Shetland your port snake, I believe, is the tail of my mouse. I should post a picture. In addition to his triangle body and long tail, he has eyes and a nose from those 3 bumpy things I think are to help nurses find your port. I make that job quite easy. As for the suit shopping, I've about given up. I might go for a swimshirt (better for chemo sun sensitive skin anyway) or just wear a tank top over it.
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Wanted to weigh in on two topics:
Ports - my implanted port-a-cath will be 14 years old next month and has been used weekly for infusions since. The skin above it looks fragile and pocked, the port septum had several years of bulging (we think from constantly putting in and pulling out needles) and about 6 months ago, it stopped giving blood return. Medicine goes in, but blood doesn't come out. During all those years I also had monthly or quarterly blood draws. And it was used to administer anesthesias for surgery. Because it's not a power port, I never used it for scans or imaging contrast.
While I doubt this model still existences, it's been good to and for me.
Because I'm so thin and don't have breasts or wear prostheses, it really sticks out on my bony chest. I used to be self-conscious about it and dressed to distract the eye from the area. Now that I have a bloated belly from ascites with a foot-long tube protruding from it, I've had to let go of vanity as well as control and dress for my comfort, not conventional beauty. Color, texture, warmth and beautiful fabrics are more important than ever!
Also, I've had substantial liver pain and discomfort for the past 2+ years and have tried to describe it here previously. Since I don't do chemo, I can't blame it on drugs or getting better. Drat! I've been told that the pain is from the liver stretching, the capsule expanding and other organs and spaces being pushed into. I work with a wide variety of methods to engage the pain as healthfully as possible.
Healing regards, liver mets community, Stephanie
P.S. Thank you EMLA, lidocaine cream, for keeping needle-sticks fairly painless.
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things have gotten better as days passed by. I now have occasional liver pain that mostly comes after meals but only for a few minutes. so relieved to hear that the pain is from treatment working (a Mega thanks for responses)...im ready for more if it takes me to NED. I was looking for dresses for my sister's wedding when I was diagnosed out of blue with mets.i thought I wont make it to her wedding but NOW I have this gut feeling that I would
HUGS n LOVE to all beautiful ladies, you have no idea how happy I am to join this site.
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Shetland, i believe it wears out the vein. It should be flushed true but since we are in constant treatments it is flushed anyway
. Mine is flushed every 21 days when i get my infusion. i noticed for the last few times after each infusion it stays kind of blue for few days. It was not like that before. I guess the meds which are infused are kind of harsh on veins on the long run. I don't know the name if mine but it is the second one and it is very good and it was installed at the same place where the old one was. So it is the same vein. I sure would not want a new location yakkkk! One location is more than enough. You are right to hate the way it looks, this one is ok though , it grew on me so i wear what i like )0 -
Maryk, i am so happy you are feeling better , things will get better and you will go to your sister's wedding and many more events. God bless and hope to hear good news soon.
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Hi Woody,
Thanks for sharing what you did about accessing ports for blood draws and keeping accesses to a minimum.
Yet, somehow the math doesn't add up for me nor does the anatomy make sense.
I've had over 700 port access procedures, most to infuse, but a good 100 or so to draw blood too. Clearly, there's been no lasting damage to my vein, though the skin above the port is thin and needle-pocked.
My understanding is the line snakes first under the skin, then dives deep into the vena cava where it tunnels within that large and pulsing vein all the way to the heart.
I've actually seen this on an unusual imaging test called something like port-a-cath-a-gram. No, that's not the real name, but my port's septum developed a bulge and this test was done with an x-ray machine and contrast running through the line to reveal the entire circuit.
Also, I was told that the line to the catheter doesn't form adhesions (scar tissue) within the vena cava, because the constant flow of blood around it prevents it from attaching to the vein walls.
While I don't want to practice medicine and diagnose, treat or prescribe, the explanations we've been given differ.
Woody, I wonder if by vein, you mean the skin over the port septum where its accessed by special needles?
Another medical mystery.
warm wishes, liver mets sisters, Stephanie
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So what color dress are you getting for the wedding, MaryK? Cuz you are going to be there.
Ok, Stephanie, we will add "Port Champion" to your list of honors. I have decided not to worry about mine.
Yes, kaayborg, I can see the mouse now. My snake has a triangular head, like a rattlesnake. Hmm, what does it say about us, the images we came up with? Is it like a Rorschach test? As for swimming, I am going on a tropical vacation this year, so I have to decide whether to hide under the rash guard all the time or just put on my attitude and defy--I'm not sure what. (By the way, Land's End has a pretty good selection of rash guards.)
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Oh, Shetland, that has got me chuckling. I do see the snake now, too. I'll be checking out rash guards at Land's End shortly. Seriously, how bad is the sun sensitivity due to chemo? We have a community pool and spend two weeks at the beach. I always wear tons of sunscreen because I'm one of those cautious, cancer prevention kind of people (a lot of good it did me) and don't typically burn but have never done a summer with chemo before.
MarkK, last fall I went to a sneak preview for a park opening this spring just 5 minutes from the home we had just moved in to. I left so excited but also fearful that I'd never get to enjoy it. Seems silly now as most the time I'm sure I've got a good long while. Confession, however. I was at a thrift store this weekend and found a very nice pair of snow pants (Land's End actually), which I've been needing for some time and that nasty thought popped right into my head, "I hope I get a chance to use these things." GRRRRRRR!!!!!!!
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kaayborg, Those thoughts pop into my head all the damn time. It sort of drives me nuts and I catch myself saying "STOP IT!!!!!" But it's a natural spontaneous thing I can't seem to help. You will use them and make sure you let me know how the skiing was. Right now we were supposed to get a HUGE storm but it is just flurries all day. Boo.....One of my friends asked me to go to her hot tub the other day and I just couldn't do it even with a pretty decent suit. I feel very self conscious with weight loss and just everyone knowing about my illness. I feel like the whole small community I live in will be waiting with baited breath to see how I look at the pool. Maybe after I go to the beach or a hotel pool away from home and get used to the feeling....... (And get a spray tan!) LOL! Scans on Thursday and the scanxiety is building
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kaaborg. Good luck with your scans. I hate Scanxiety!! Do you get your results right away? I spent over two years making myslef crazy waiting the full 24 hours for results. So I called and asked to speak to the head of the department and told him how stressful it was to wait and now I see the radiologist right after my scan. It saves so much stress.
I hate those nasty thoughts of thinking I won't be here for something in the future. Especially with an 8 and a 10 year old. It cripples me sometimes. I am sure that most of us deal with depression. I mean who wouldn't be depressed about knowing how you're going to die but not having any clue when. It's a really sad way to live. I try to make the best of it and in front of people I am always so positive. But when I'm alone I do get really sad and I cry a lot. Not huge cries usually(takes too much energy). Just a few tears. Doing it as I write this now. Just sick of being sick. And not knowing the future is really scary. Sometimes I feel ok with it all. Sometimes I feel like I know I'm going to heaven and God has a plan for me. But lately I have just been feeling sad and angry because I want to be here in this life. I want to meet my grand babies. But unless a miracle happens I don't see how that is possible. But hey miracles happen everyday
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Sonya, You just summed up my feelings except that unfortunately I am not as positive as you that God has a plan.... I wish I was. I have never been very religious and am feeling sorely short on faith right now. Although I sometimes get a fleeting feeling that I am at peace with an uncertain future, the feeling doesn't last long at all. I know in my heart that I am NOT ok with it. I get both sad and angry too, but crying does suck a lot of energy and can ruin a decent day in no time. So I try to keep it short and private. It is pretty hard to keep up the positive attitude around people 24/7 but I don't want to chase away the ones who have stuck by me. (Yes, some have faded away rather quickly) Talking to a phycologist has helped me somewhat, and I plan to make it a semi-regular thing, but she really can't say anything that would convince me that dying early or soon would be OK. I love my life so much and want to be here desperately. To laugh with my kids, see those grandkids and hold my DH's hand when he is an old fart...LOL! You are right, miracles happen everyday and so does surviving beyond stats. I am hanging onto that.
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Stephanie,
I appreciate you replying on my discussion with Shetland. Frankly, i do not pretend to be an authority or to provide information based on anything but my own experience. I try to help and have conversations here with others either to help them or help myself.
It is not a matter of math, sciences oranything adding up. It Is simple conversation between human beings.
Personally i never searched ports and i will not very soon. What i wrote was personal and from others who were on this board.
Wishing you pain free , well rested night.
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