How are people with liver mets doing?
Comments
-
Shetland great news - I'm thinking NEAD is no sign of active disease and I right? many of my "exploded" mets are now necrotic so guess they're inactive too. I hope that light and happy feeling remains with you at least to get through the frantic festive season!
Leah, sorry to hear what you're going through but great that your docs are on the case so quickly and hope the gemzar is good for you.
Woke this morning to find a dead bird and houseful of feathers it's taken me and no. 2 son a good hour to clear up. Our two beautiful and docile lap cats it seems have turned feral overnight0 -
Dear Leah S.,
I loved your post and am so happy for you that you are improving. I had to laugh at the plastic knife but metal spoon and fork remark. I have been to Israel- 5 years ago.. I had packed some salt covered rock from the Dead Sea in my suitcase. As I went through security exiting the country, I heard a female military agent speaking to me about the wand (sorta geiger counter) said I had a high salt content in my suitcase. As they went through my suitcase I showed them my rocks. They were definitely amused when I asked if I could keep them (I could).. Anyway, I loved my time in your country and you are right...the security is top notch. Hope we both have massive healing of our livers! Carolyn from Nashville, Tn
0 -
Yeah, great news Shetland! Happy Christmas dance for you! Wish I could still do the the Letrozole/Ibrance combo as it was working for me on the tumors but not the enzymes I guess. Find out Wed what is next. That stinks Leah, a whole week in the hospital. At least they have controlled whatever was going on.....Hope you have a lot to keep you busy!
0 -
Thank you for the happy dances etc., Woody, Babs, Kaayborg, Leah, Isy, and Artist. It's especially nice to be able to share with you guys here on BCO because only three people "in real life" know my stage iv status, and because I know my fellow stage iv people really understand. Yes, by NEAD I meant No Evidence of Active Disease. I coined that one myself because the CT still shows evidence in the shapes of tumors, but the PET shows no metabolic activity. They are dead tumors. I don't know if they will eventually get all cleaned up. They were big and numerous. (Unsuspected explosion last year, right?) FDG stands for fludeoxyglucose or fluorodeoxyglucose, which is the radioactive tracer that the PET scan sees because active tumors like glucose. I suppose that for me it would be hard to know what is going on with a plain CT.
Leah, I hope you are out of the hospital soon, and that gemzar will be good to you. Artist, I know this waiting has been hard, and it will be a relief to have a new plan come Wednesday. Isy, sorry for your National Geographic moment (feline hunters and prey).
0 -
Shetland. Many times I wish I had kept this Dx more to myself. Life would seem more normal for sure. People would be acting normal, I wouldn't have so many weird inquiries or people talking about how they are having their whole congregation pray for me in the middle of my office. LOL! The waiting is bringing me down and I imagine I can feel a few more twinges. Today I had blood work and asked for them to check the tumor markers so I have another baseline before starting a new med. Wow, that would be soooooo fantastic to have those buggers in your liver just dissolve one by one! Rooting for you! Really anything is possible with this crud!
0 -
It seems like I'm starting to have some pain on my right side, kind of where I expect my liver to be. I'm surprised because my last scan (October) showed my mets were small. Do any of you have intermittent pain in your liver, due to mets? I'm now concerned that Xeloda may not be working. I don't see my doc for two weeks- and I really don't want to deal with this until after the holidays, (another CT due end of January) so I'm just going to wait and see, but I was wondering what "liver pain" feels like to others.
0 -
I have been having that pain you just described and was actually in the ER last weekend for it. Turned out it's time to evict my gallbladder, full of stones! But it sits right next to liver, so they could see why I was so upset!! Hugs to you!!
Alissa
0 -
I had liver pain right in between my breast and seems at edges of liver. I'm on taxol and liver pain has subsided. will do PET tommorrow for followup.
Terri
0 -
sandilee, My twinges in my right side ribs feel like little burning pokes and just a "fullness" there and now my right shoulder is having some sharp pains in the top of the joint, also a sign of liver mets I hear. Hope to start a new med plan tomorrow!!! I'm stressed....ibc, Hoping for the best with your PET! Yah Mama! What a relief huh, even though you had to go through surgery anyway...
0 -
I only had liver pain at diagnosis. Once treatment started it went away entirely and even though I still have at least two tumors the size of large lemons and innumerable smaller ones, I don't feel a thing. Before, I felt uncomfortable fullness like being 9.5 months pregnant and then just days before the pain stopped entirely, I had very sharp, stabbing pains at top of rib cage just beneath my right breast.
0 -
Sandilee, my liver pain before treatment was of two kinds. One was a "tummyache" just below my sternum. The other was occasional attacks of a sharp ache under my right ribs wrapping around to my back, that was worse with movement. Later I felt twinges under my ribs as the taxol was working. I still have twinges sometimes if I have gas (sorry tmi); maybe that is because of the liver having been injured/scarred.
Regarding telling people, I can see pros and cons to any choice. I decided to limit disclosure to protect my kid and enjoy our time together more. There is nothing to tell unless/until I start going downhill. I miss out on being able to get support, but I gain in having people around me act normal.
Why do I like that term "liver buggers" so much? I wonder if Ibrance affects the ability of my macrophages (debris-eating white blood cells) to do their job and get rid of the dead tumors. It doesn't really matter; just one of the strange thoughts a cancer patient has.
Ibcmets, hoping to hear good results from your scan!
Mama2, only in bc-land are gallstones good news, right?
0 -
Sandilee, before diagnosis I was very bloated below breasts, bra often had to be undone or loosened, definitely that 9 month pregnant feeling. I also had stabbing sensations, though not that painful, in liver area and round my back on right side under the ribs. Also had some pain in right shoulder. As soon as treatment started the bloating went away but still now get twinges - I've had these both when tumours were growing and when they were shrinking so really don't know where I am half the time.
I'm also not one of those that will sing from the rooftops that I have cancer, I like to keep a part of my life and a whole set of people unaware of my situation which is restricted to family and friends who were around first time round. I don't want to be defined by my illness or always known as "that poor woman who has cancer". I'm happy for people not to make allowances for me or treat me any differently - my close friends and family know not to overdo the sympathy. When I go to the cancer centre at the hospital I often think "what am I doing here, surely I don't belong here?". I guess it helps that I still feel really well.0 -
I just want to thank all of you wonderful people for all the caring and helpful information on this thread. Last week my oncologist told me that my liver enzymes had gone way up in my last blood test. I have lots of bone mets, but never anywhere else - until now.
I spent almost a week reading through this entire thread, and by the time I had caught up last night, was pretty much prepared for what was about to come. Tamoxifen failed pretty quickly, and Arimidex is failing too, so I wasn't too surprised when i thought it was attacking my liver already.
BUT - I had an ultrasound this morning, and the technician said he couldn't find anything sinister at all!! I still have to wait for the official report, but it looks like the bloods may have been affected by the recent radiation on my hip mets.
No offense, but I'm glad I'm not joining you ladies quite yet. Although I am so glad I have you to rely on when my time comes to join you all. Thank you all for making a terrifying possibility into a not-quite-so-scary time, thankfully with a good outcome (for now)
Sue from New Zealand
0 -
Shetlandpon,
Did not remember posting on the liver met thread here about my scans. They were good. I'm on taxol & Xgeva only. The taxol is working great at reducing the liver mets by 2cm and got rid of the active lymphn node & bone mets stable. It is giving me a lot of nueropathy climbing up to my knees so my onc cut the dosage in half today. Will be off on vacation for 2 weeks to Chicago to see family, can't wait.
Happy holidays everyone.
Terri
0 -
Suems- I don't blame you one bit for not wanting to join us just yet. Who would!? So glad your scans look good. Sometimes it's just the medications that play havoc with our blood levels. Meds are often not kind to liver enzymes because they are processed through the liver.
I hope everyone is enjoying the season with people they love.
0 -
Sandilee, I also have intermittent liver pain. Sometimes it feels like tightness in the area (like the rest of my abdomen is pushing on it). Sometimes I have little pains in the front, side and/or back area where the liver is located. Sometimes, they are clearly liver pains and other times I can't tell whether they are liver pains or rib pains on the inside of my ribs in those areas from bone mets. Regardless, mine have been tied to shrinking tumors.
0 -
JFL- thank you for your response. Shrinking tumors? I like the sound of that. Fingers crossed
0 -
hello all. I had pain to my side thought it was stoNes or gallbladder. The pain I feel is due to my 8th rib which almost had a hole init from the C. I also believe I cracked it.
Had liver enzymes check 2 weeks ago, went from what I think was the 400s to around 68. No tms yet and my first scan is in January. I kept reading you want feel pain with liver mets, I read most ppl find them due to something Else. I went to hospital due to pain but thought it was gallstones. Wish it was. Hugs to all.
0 -
Terri ,wonderful news happy you got them for the holidyas and i hope they last a lifetime. I am glad taxol is working for you it did a good job on me too.
All of you ladies i hope you get nothing but good news , l wish you all a very Merry Christmas and to those who do not cele brate Christmas Happy holidays hoping it will bring us all healing lights , hope and joy.
0 -
Same to you Woody! Have a beautiful season and enjoy your family!
0 -
re. pain with liver mets –
For the first year when I had a dozen mets inside my liver, I didn't have extreme ongoing or specific pain and my liver didn't swell much. During the past year, I've had more trouble with pain, swelling, fullness, nausea, reflux and ascites. I was told the cancer now coats the outside of my liver and is in peritoneum - both give me ascites, which leads to similar symptoms.
The doctors attribute the pain to both swelling liver and tumors on the outside - anything that causes the liver capsule to stretch or twinge can be painful - whether the culprit is on the inside or the outside.
I'm currently taking tramadol and various natural remedies for the pain. For the nausea zofran, reglan and more natural remedies are holding the line.
Hospice seems remarkably well informed, ready, willing and able to help with my variety of symptoms, not only pain.
btw, I read one case report of a woman with breast cancer whose tumor-filled liver reached within an inch of her pubic bone. Whenever I feel too sorry for my ascites-squished guts, I think of how it would be without an indwelling drain and a chance to relieve the pressure.
Singing praises of modern medicine and how that drain has freed up my life.
good wishes to all my liver sisters, Stephanie
0 -
Hey gals, dropping in for an update, things are rough for me right now.
My liver mets are huge and I'm in pain around the clock. I'm taking oxycontin, plus oxycodone for breakthrough pain . My energy level is low and I can't do anything physical. Even something as easy as unloading the dishwasher is hard. Adriamycin, my most recent chemo, didn't work, the mets are all bigger, my scan says increase of more than 25% compared to the scan 3 months ago. We are re-trying Abraxane now, crossing fingers I'll get a little mileage out of it, but it is a long shot. Amazingly, my liver function is still within normal limits, so I'm still able to get chemo. My onc is amazed I have enough liver left to have normal labs.
Anyway, I'm a little overwhelmed with sadness right now. I'm thankful I have had six good years, but now that things are so serious I feel the weight of everything. I think the holidays make it especially hard. Thanks for letting me vent/share a little.
0 -
hugs Nancyh.
I will put into the world that you get relief soon. Visualizing treatment shrinking those suckers.
0 -
Hugs to you Nancy!! Keeping you in my prayers!
0 -
Oh Nancy, I wish I could take some of that sadness from you! It hurts my heart to know you are hurting. Please know that you are in my prayers today and we are all thinking of you. The Holidays do make it especially hard that is for sure. I am keeping good thoughts that the meds will kick in again and give you some relief.
0 -
Nancyh,
It is normal to be depressed during this season when you are in pain. It breaks my heart to see you in so much pain and sadness. Please believe we are all here for you evenif only virtually . I hope abraxane will give you some relief. You are in my prayers and on my thoughts. Vent aay as much as you want we are here for this. God be with you. Gentle hugs .
0 -
Nancy, so sorry to hear what you are going through at the moment but the liver truly is an amazing thing and the fact that your liver function is still good is surely a sign that there's hope yet. It is so hard at this time of year. I used to LOVE Christmas but frankly I can't wait for it to be over. Everyone is out enjoying themselves and I have that little voice at the back (and front) of my mind saying "is this the last one?". Trying to stay upbeat and thinking of all you lovely ladies that there's plenty of Christmases in us All yet!
0 -
Nancy
I'm hoping the Abraxane gives you your much needed relief. We're all here to support you and are sending you virtual hugs!!!!
Babs
0 -
NancyH, I am sorry you have to go through these especially on this time of the year. You have every reason to be sad so--Give in. Shed Tears. Be depressed. Embrace fear. Worry about dying. Think about the loved ones you'll be leaving behind. Cry over the life you should have had. Lose hope. Go through all the negative emotions you can possibly think of, but when you're done, please remind yourself that you are strong. Had you not been strong, you would not have lasted 6 years! I read your bio and you have been through a lot--a lot of setbacks. You are strong not because you don't shed tears or go through a slump. You are strong because you let yourself embrace sadness, hopelessness and all these negativity--for a moment, but you manage to pull yourself up and fight again. With our situation what's the alternative? Just as staying positive and fighting to be happy can be tiring, I find it as tiring to be hopeless and depressed. It's always a roller coaster ride with my emotions. I personally will choose to hope and be somewhat happy everyday. If my hope gets crushed one day because I "lost the battle" oh well. I'd say I still won. I would choose that over living in fear and sadness everyday and die that way. I know it's easier said than done. You've had your 6 years. I've only been a stage 4 not even 2 months. I'm a rookie compared to you. Please know that women like you are my source of inspiration so please hang in there. I would love to have 6 years or more too...Love and prayers, Kim
0 -
Nancy, it is overwhelming at times to be filled with sadness and despair. I'm sure you've been through it many times before. It is really painful and I am sorry you are at that stage. But, I agree with iliveformybabies. It is o.k. to give in to your sadness, fear, and grief for a while. I think we would all go nuts if we didn't. Then, pick yourself up and face the new challenge with all the strength you can muster. I hope that comes soon for you.
0
