How are people with liver mets doing?
Comments
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Sorry to see you here Jill and the rough start! Saying HI to all the NEW kids on the block and happy to see the OLD ones as well!! I've been sad about our losses, busy with the kids and had to be re-ported as my old one was trying to strangle me...this new one is no hell and Onc said we'll wait till after Christmas to see if the new one takes...sticks out and high like a sore thumb and interferes with my right arm...sigh..it's always sumthin....on the bright side I'm still stable, because I've gained weight (don't know who blamed lol) they increased my herceptin 25%
. I'm happy with 12 out of 10 (yep) side effects that I'm still on this side of the grass...soon to be snow
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Oh Jill, what a thing to happen! In the end, you're probably better off. I had A/C when I was first dx and didn't have a port. Adriamycin destroyed my veins. I now have a port and am SO GLAD. Best of luck with your tx in the future.
Leah
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Hi All ....new to this forum and grateful beyond words to have found you. I am currently at the point of having to have a liver biopsy. Diagnosed with ILC left side in 2012 and had reconstruction after bilateral mastectomy, shortly after that 30 rounds of radiation and then tamoxifen. The radiation destroyed the reconstruct to my left side so badly that I was in constant pain from contracture. Found a wonderful plastic surgeon, great doctor and an amazing person, and had two surgeries this past summer, 3 months apart... the recoup was challenging but I felt great!...almost completely pain free after dealing with that for over a year and a half ... managed to have a wonderful summer despite the surgeries, celebrated by oldest graduation from trade school...life was good .... I went for my 3 month check up in September and my CA27/29 was elevated to 49 ... not crazy high but out of range .... my first surgery was in April and the marker had elevated to 32 at my May visit .... went down to 29 in early June .... 2nd surgery was June 25th and then it went back up to 49 by September. Onc thought it might be from inflammation after surgery but sent me for bone and CT scan ... everything looked good except for my liver ... report says multiple, ill-defined hepatic lesions suggestive of metastases!....I feel like someone hit me square in the face with a brick .... how can I feel so good and hear this news? Onc wants me to have a biopsy but some of my research seems to indicate that biopsies should not be the first course of action ?? can spread the cancer and may limit some treatment choices as well ??.... Im torn because I clearly know that there is no way Im going to treat something with chemo unless Im really really sure it need to be treated ....is that possible without a biopsy?? Im thinking no ... reading your posts I see that biopsies are highly recommended .... Im so scared I cant breath sometimes .... I have a 13 year old too and I dont want him to be scared so I have said nothing ...Im praying for a miracle that maybe these lesions are benign .... my onc called the hospital to set up the biospy and when they called me to schedule I thought about the fact that I have never heard of the doctor whose doing the biopsy (diagnositic radiologist ?) so how do you just go and have someone you know nothing about biopsy you .... I have a call into my breast surgeon who does not do biopsies but she is the head of breast surgery at Overlook Hospital in Morristown, N.J. and I have asked her to take a look at the report and maybe she can direct me to a doctor that she knows to do the biopsy ... so Im functioning with moments of terror and I was not happy to see the words "ill-defined" on the report ... on a positive note .... there were no other findings that would indicate that there may be trouble somewhere else and for that I am deeply grateful.... would welcome your thoughts .... God Bless
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Njoy,
I am so sorry to welcome you to this thread. I am also sorry for the ordeal you went thru from radiation. I know how frightening and stressful is the unknown. But, i am sorry to tell you about how important it is to biopsy the liver. Without it there is no way you can get a treatment. The liver of all organs cannot be left untreated, i know how scary is the word "biopsy" specially when it is in a sensitive organ. It is done by a specialized radiologist because it has to be a CT guided biopsy. It is not painful, and after one day you feel as good as new. I am sorry to tell you that biopsy cannot spread your cancer more than the breast reconstruction can. If your biopsy ,God forbids is positive, then your cancer is already circulating in the blood through the liver. They have to perform a biopsy in order to specify the kind of cancer if it is the same or it has changed so they can treat you properly. I am like you ILC with metastases to the liver numerous , and i do not have any symptoms and my CA 32 , and i look very healthy. This being said , it does not mean your biopsy would be positive, it could benign tumors. Until you get your answer, please go ahead with the biopsy and choose someone you are comfortable with, but do not delay. I will not tell you not to be worried, but i will tell you to breathe slowly and make an effort to be positive. We are all here for support, and i wish you negative results. My prayers are with you, keep us posted.
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Woodylb......thank you for your post and good advise .... I will try the breath and get this moving ... God Bless
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Njoy,
I just had a liver biopsy two weeks ago in order to make sure the liver mets were ER+.
Thankfully they are, which increases med options; the biopsy itself was nerve wracking, I should have asked for a sedative straight away but I waited and then opted once they started; I was so nervous I think that it made me tense and in turn I was emotionally a basket case! Bottom line is that we are fortunate to have a option for our doctors to peek at our insides without major surgery, it's so important to have accurate information so you can get the best treatment match. No doubt this is scary stuff we all deal with every second of everyday but I hope you will have positive news and I will be thinking the best for you! I have a sixteen year old daughter and I just try to gauge how much info she's up for on a day to day plan. Good news is that I am so fortunate to have a great husband, a fantastic daughter, and I have been blessed to have lived the past year without too much change to daily life. Breathe deep, you are not alone, and keep us updated!
Many positive thoughts coming your way,
Cisco711
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Dear NJoy:
Sorry to welcome you to this thread, but there is so much life left worth living! There are women on here who have been dealing with liver mets for years. So go ahead, be upset, take a day to hide under the covers even, but then take a deep breath, get the biopsy done so we know what we're dealing with - the more you know about it, the better - and maybe it'll be benign! Keep us posted!
- Penny
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Cisco77....Thanks so much for responding....Im so happy that your biopsy confirmed an ER+ status. Im with you on having a wonderful family support system and that does make all the difference in the world. I want so badly to protect them from worry about me so much of the time and when I see the worry in their eyes it just takes me out....I will be going ahead with the biopsy and will move forward from there. Wondering if anyone out there had lesions that were suspicious and actually did turn out to be benign....I would think that radiologist are pretty good at discounting the ones that are not characteristic of being malignancy???
Redwolf....Penny.....thanks for your words too...so greatly appreciated....you're right about life and I too am blessed to have so very much to live for, to celebrate and to enjoy and I have every intention of doing that....this week my fear has gotten the best of me, but I have been here before and I know that "this too shall pass" and I will just do what I have to do....its the almighty "unknown" that scares the heck out of me but thats always going to be a part of this journey and when you think about it the unknown is there in life for everyone....its a bit different but still unpredictable to some extent...thanks again
. PS..my father-in-law lived in Little Egg Harbor for a while, so pretty there.....
God Bless and thank you for taking the time to reach out to me....I will continue to post my progress....
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Hello Ladies! Not new here but new to posting.
Need advice as u all know where I sit...had a CT this morning to see how carbon/gemzar worked. Can get results tomorrow late afternoon....right before I head out of town til Monday. Would u all go or wait??? Like you all I have great support and I think a good overall attitude....I just can't decide. Thanks for all the input.
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Babyduck,
I would wait and put my mind at ease , you will enjoy your trip better:))) wishing you excellent results.
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Babyduck - I've been in your shoes. I chose to wait until I got back from the trip to find out the results. But that's me - I stick my head in the sand and pretend like everything's hunky-dory until I have to face facts.
:-) Penny
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Jill...ugh! I didn't know they would give A in your veins! I'm relieved you'll have a port...just make sure it comes with a no-strangle clause, right Jo!!! Every time they do a blood draw & say good return, my heart skips a beat
. Looking forward to this txt lasting many, many years, friend!Cisco...so happy for the positive factor! But who does a biopsy without sedation...eek! Sometimes its hard to know what to celebrate in this journey. Like her2...my surgeon, upon learning in was +, said she was sorry...but like Woody & I were mulling over, we have the gift (so to speak!) of hercep\perj....so, we just take what there is and pray for life!
Babyduck...hope you're on your way to a happy vacation cause I'd throw out the plan to seek results before leaving. I'm just that type...I couldn't enjoy myself not knowing. I may have a really great time or a miserable time, but I wouldn't have it looming over my head. Wishing you a fun trip!!!
N Joy....love that my auto correct keeps changing your name to enjoy....which is prob what it stands for! Thank goodness you're getting your biopsy! It sounds like you, like many of us, have fast growing cells so waiting isn't the best plan. I can understand where you're coming from. I had total diep flap recon 6/12 following recurr 6/11. Clear scans, great blood, markers. At my 12/12 scans, a liver full of tumors. All I could think was 12 hours of mutilating my body and now...stage 4. Of course, being on chemo prevented some inside healing in my stomach so it's probably more of a physical hinderence to me than chemo. Just a bummer, but I do have boobs and mostly flat tummy. I will also pray for negative scans!!!
Jo..did you get a power port instead of a regular one? This was my second power port,, which is nice for scans, etc, but they do stick out. My first one was bothersome but I attributed it to knowing I was getting rid of it. This one I knew was a lifer../but it is in a better spot, I think. Gooood luck with it! Should be your bosom buddy by Dec!!!!
Went to gp on Mon for wellness check. Told her I couldn't catch my breath, bp up, heart races. Saw my tms from last Wed were great, great enzymes & blood. Told her I was worried about mets, for no reason other than my onc was gone & I wanted scans. She did thyroid, sed rate and a couple tests that may show mets, but thought underlying problem is anxiety. Oh my...hit the nail on the head! I went home and that night could breathe! Feeling better so even though she thought I could try meds, think I'll see my center's psych. And all the tests were totally normal so she said it was a good sign no other mets since the tests showed no inflammation of any kind. Breathing much easier....which we all know is a tough thing sometimes!
I see my new one 8/22....looking forward to it. XOXO
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RonnieKay,
I am glad you are breathing better since your tests are all normal. It is a good sign
) i hope you like your new onc. Keep us posted. I started my one week rest from xeloda. Fingers crossed . 0 -
Hi Jill, so sorry to read about your torture scene. I'm glad you decided to get a port. Life is so much easier with it. I'm on my 3rd port, got one in 1998 when I was first diagnosed. Had it taken out after one year. Got the 2nd one in 2007 when I had the recurrence. I kept the port for over 4 years. So now I'm on my 3rd one.
I was on Abraxane since last year August. It was working very well for me. My tumor markers went way down. I stopped Abraxane in July this year because I was supposed to have repair surgery on my skull done. However, the whole prep time with seeing all the other doctors involved took too long and my tumor markers started climbing again, even thou I was taking Arimidex and got Faslodex shots. My PET/CT in September showed progression in the lung, bone and 2 lesions in the liver. The liver mets are a new thing for me, just like yours. I got off the Faslodex and Arimidex and are now back on Abraxane.
Now I'm a little concerned hearing from you that your liver mets developed while you were on Abraxane. The next time when my tumor markers will be checked will be on Oct. 28. I hope they will start to go down again, if not I might have to switch to AC or just Adriamycin as well. This worries me a little, since I have a small heart murmur and Adriamycin is pretty hart on your heart. Have they told you anything about the heart risk?
((Hugs))
Helmie0 -
Tomorrow is scan day. Going to have cat scan of lung, abdomen and pelvis plus a bone scan this time too. Scheduled to see the doc next Wed, which will be a treatment day so I probably won't get the results until then. Think I will just try and enjoy the weekend too. Take care everyone....thinking of you all. RonnieKay....so glad to hear you are breathing better....I didn't even think of anxiety! That is sure something we all have way too much of!!!
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Prayers for you and yours, Jaytee. Keep us posted. Enjoy the weekend.
:-) Penny
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Good luck on your scans jaytee, have a nice weekend
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I did get results before I left...50% shrinking in liver tumors!!! Very pleased. I'm going to continue on Carboplatin/ Gemzar and most likely to the Y90 SIRT spheres treatment. So glad to have you all. All of us Just need to continue to be strong! My prayers will be with you all!!
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Thank You, Lord! Great news, babyduck! Thanks for sharing!
:-) Penny
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Woody...woohoo for a week off! Hope you feel good! I find myself counting the days til txt in my head...even though it's not rocket science, I relish those days off so much...a mental break as well as physical. Penny...I really like your every 2 weeks for Navelbine, instead of 2 wks on, 1 wk off. It must help with white count too. Praying it's doing it's job!
Jaytee..I'm 3 hrs behind you & have txt on Wed, starting at 4. I'll have my phone with me so hope to read good results! No pressure
. Babyduck...awesome shrinkage!!! Bet you feel like you're walking on air!Helmie...ugh...sorry about liver mets joining the party
. I'm sure if you had to go on A, they would keep a close eye on your heart. Herceptin's not easy on the heart either, but many of us tolerate it well. Guess we try what we can & hope & pray we find the magic! I wish there'd not been such a gap in time waiting for your skull surgery. Were they able to do the repair? Hopefully your mets recognize Abraxane and take a hike! Jill...hope you're feeling strong & tolerating new txt well!I got my "Now" L Glutamine from Amazon to combat my tingling toes! Do not look forward to mucking up my water but my onc says it works & I've read others' comments about it helping neuropathy so...bottoms up!
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RonnieKay,
I feel good thank God , sleeping late in the morning and lounging around without any schedule , it feels wonderful
). I don't have any hand and foot syndrome yet, but a liitle dryness on the feet , i keep moisturising. Let's hope it helps. What is the L glutamine you are talking about? I hope it helps you with neuropathy ? Babyduck, wonderful news on the shrinkage wowww keep it up !! God bless you.
Helmie, i am sorry about the liver mets and i hope Abraxane gets to control it .
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Babyduck, great to read the wonderful news! Guess this is worth it...
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Hello ladies,
I wanted to share with you, my son's first english essay at his sophomore years at the university, it was for his midterm and he got 87/100 on it. It fills me with pride and overwhelms my emotions. It is such an adult review on cancer in the family and so perceptive. Love to all. I am a very proud mom.
American University of Beirut
English 203: Reading Response 1
Professor Rima Deeb
It spread through our family like the Black Death, a plague that ate away at the insides of every single one of us in a way that was worse than any real malady could have caused. Itdevoured me in such a way, that I got to a point where I really could feel nothing anymore. Iwas a walking emotionless drone, wandering around waiting for his life to end. I stopped talking to my friends, I stopped going out, I was just lost for so long. I even started trying to distance myself from my mother, subconsciously I think maybe I didn’t want it to be as painful when it was time to say goodbye. Thankfully, that part of my life is over now, I have decided to take whatever time I have left to make something out of my relationship with my mother and to try making her happy and proud of who I have become.
Dad on the other hand, he was pretending everything was fine. Not being the most vocal person about his emotions, he uses this as a way to cope with such situations. And to this day, and now, where to me everything seems worse than it has ever been, I think he still doesn’t really understand the gravity of what is going on. “Don’t worry habibeh mom will be fine” he said (habibeh is Arabic for dear), when even the doctors said at this point, all they can do is slow the progression and perhaps if lucky stop it. My dad is not very social, coming from a rough background and a difficult childhood; he has given me everything I have ever wanted because as a child he got nothing from his dad. He’s living his dreams through me.When he is faced with the possibility of losing his wife, his only true friend, his best friend, he just blocks it out. Instead of dealing with it, he pretends it is not there, and who can blame him really?
Mom shocked me. She became a stronger person than I could have ever imagined. She turned into Supermom. In her mind she had to teach me all the lessons she learned in life in a structured daily schedule of lengthy lectures where attendance was mandatory. It was like taking an intensive foreign language course. All she really wants is to make sure that I will be alright when she’s gone, even when she knows that after eighteen years with her I know how to take care of myself. She spent those last eighteen years not only giving me lessons on morals and values but also teaching me to care and love and have hope for the world through the unconditional love and care that she has offered me, and that I regret to say I take for granted sometimes.
You’re probably wondering by now, “What in the name of God is he rambling about?” I think it’s time you found out. Let me take you back to the first day when this all started, five years ago. I was lying down on my couch in my bedroom watching televisionwith my cat gently purring at my side. When suddenly I get this feeling that I had to go see my mom. So I get up and go to the living room only to find her on the phone with the mostserious face on. That’s when I knew she was talking to her doctor. She had recently had surgery to remove a small benign tumor from her left breast. Right under that tumor though the doctor found an even smaller (under than one millimeter) growth which he removed and biopsied. He called to give the results. My mom started sobbing and that’s when I had realized what was going on and went into shock. My mom was diagnosed with invasive lobular carcinoma, a relatively rare form of breast cancer that affects five to ten percent of all people who get breast cancer. Seeing as her tumor was so small the doctor thought that it was still in its early stages. However more surgery proved that in fact the cancer was now metastatic and had probably spread to other body part with no visible effect yet on any scan.Chemotherapy was started immediately and for a year we all went through hell. This brought good news though, the cancer was gone and she was in remission. She was also to start a hormonal treatment for five years and have regular scans every six months.
Everything was fine for three years. Everything except this giant hovering black cloud above my head that maybe one day, this thing would come back to haunt my family as it once did. Sadly, last year, it did. But not only had it come back it had also come back in her liver. A second round of chemo was started, and this only reduced the size of the tumors by about twenty percent, we were hopeful. However the chemo put her body in really bad shape and the doctors had to stop or she would’ve died from treatment. Subsequently a second hormonal treatment was started. Three months later, when she did her scan, the cancer had proliferated extensively and had now also invaded the spinal column and the hip bone as well as increasing its grip over her liver by a great deal. At the moment she is on another type of chemotherapy, all we can do now is slow it down, hopefully stop it for a few years, but that’s it. My mother is dying from this disease at one point in time or another so all I can do is make her happy and spend my time with her. This is made difficult by the fact that at the moment I am living in Lebanon alone and she went back to Saudi Arabia because her insurance does not cover the medication here. I talk to her every day though, and I know that getting an education is what is important and it’s also what she wants for me. I miss her sometimes, but at least I see her every month and a half or so, so it’s not too bad.
Some part of me still hopes that I’m going to wake up and this was all a dream, or that by some divine miracle bestowed upon my mother for her unimaginably strong faith, her body would be completely clear of this disease. So I pray. I pray that whatever God has planned for this family, let it be for the greater good even though it may seem bad for now. I also pray that when it is time for her to go (hopefully a long time from now) she goes inpeace. Not in pain, not on drugs. It’s a lot to ask considering how this disease functions, but maybe God will grant his unworthy believer this one favor.
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Wow Woodylb. Amazing son. Glad he coud express himself. Thank you for sharing.
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Thank you leftfoot
) it left crying for hours... 0 -
Hello Woodylb!
He has expressed my feelings with his words for my mom and can completely relate to him specially when every morning when I get up and hope it was a bad dream.
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Woodylb. ... I have a 20 yr old daughter and 17 yr old son....it breaks our heart to know they hurt and yet thankful to know they love us so.....thx for sharing
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Wow..Woody, what a touching essay, I was tearing halfway through..I think you must be proud that you've raised a good son:) I hope that with all his love and blessing, your treatment will continue to keep you well for a long time to come!
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JCSindia,
I know exactly whar you are talking about , it breaks my heart to feel what he is going through, yet it makes me so proud of the way he has explained each and every one of us .
Babyduck, thank you so much , and you are right even though they are suffering , it make us so proud and it is so fuzzy to onow how much they love us. May God have mercy on us and on our loved ones.
Cheery,
How have you been? I hope you are still hopping across the continent and well
) thank you so much , and i am so proud of my son and proud of the man he has become, it is nice to know that all the hardship was not in vain and that each year i have spent with him gave its fruits. ((HUGS)). 0 -
Jill,
So sorry to hear about your first AC treatment. Hope you're next one goes much better!!'
I had a reaction to my first Navelbine treatment this past Monday. The IV did not feel comfortable the minute they put it in and I should have made them take it out. But, being the non-confrontational wimp that I am I just told the nurse it was uncomfortable...she told me it was just in a bad place. Well, they infused the Navelbine, did a flush and I went on my way. The next morning my vein was swollen and red and hot to the touch...by Wed morning my whole arm was swelling. They put me on antibiotic and along with the cold compresses I have been applying, it is finally feeling much better. From now on I go to my onc first for the iv and then to the treatment center for infusion!
Have been feeling crappy all week...muscle and joint aches...symptoms of cold...have any of you experienced these se's? Is this common? What else can I expect? Don't mean to be a moan and complain baby...just having a crappy week. This too shall pass!!! My best to all!!
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